Lilah's story

Shunt Failure

2011-08-29T14:16:00.000-07:00

I know, I know you're probably getting sick of me saying I don't have a computer so updating is a near impossible task lol So this might be a little on the long side. On June first, Lilah had her first shunt failure, something I was somewhat expecting since it's basically just a matter of time. Although it is something you expect, I would say you can never fully prepare yourself for it, or know what it's going to be like until it happens. In the days leading up to our ER visit, Lilah hadn't been feeling well. She had been uncharacteristically fussy. She was throwing up after every meal. The first day or so I didn't really pay much mind to it because there had been a stomach bug going around, my son had had it. I thought Lilah may have caught it. The second day she was sleepy and really had no energy. Again I thought this may be because she had a virus. I decided that if she wasn't better in the morning I would call her doc. I noticed that night that she kept waking in the middle of the night crying and hitting herself in the side of the head. That really worried me, needless to say, I didn't get much sleep that night. The next morning I was going to get my kids on the bus and off to school, then call Dr. Landes. When I got up I tried to wake Lilah, she was pretty much non responsive. She would open her eyes for about two seconds then fall back asleep. She was a very pale color also. I made a decision right there to bring her straight to the ER. The unresponsiveness was so worrisome that I was debating on calling an ambulance. My sister said we should just get her there as fast as possible. When we arrived 15 minutes later at the ER, they took her in right away. The ER doc looked her over and said, I think we're looking at a very sick girl, if it's not her shunt then she probably has some nasty virus. At this point I was in a way hoping it was her shunt. While it would require surgery, at least I knew what to expect, that it was a pretty common, simple surgery. With some unknown virus, I would have to worry about them finding what it was, and hopefully giving her the right antibiotics to treat it. I was thinking to myself if it is a virus, and is making her this ill, then it must be a real bad one, one that could potentially kill her. I know I was probably being paranoid, but when you're a mom the worst case scenario always enters your mind. They decided that they would try to get an IV in her because she was most likely dehydrated, then get her in for a MRI. That was pretty much the first priority before anything including blood work. The nurse came in and tried getting an IV going, and tried, and tried, and tried. Her veins were extremely hard to find because of the dehydration. They decided to get a certain nurse that was known for sticking impossible veins. The doc, which by the way looked like an abercrombie model, said that they would try this last time and if we couldn't get it we would hold off so we could get her MRI over and done with. The nurse was able to find a good vein, and stuck her perfectly on the first try. Now mind you, the whole time this was going on with the IV'S Lilah barely even flinched. She let out a couple little whines and that was it. They finally came in to grab her for her MRI, I went up with her, and again Lilah did not even move she slept through the whole thing. I guess in a way this was good, they were able to get a good picture in a short amount of time. We went back to the triage room, and waited for Doc Abercrombie to come in and give us the results. He came in a short time later, about 15 minutes and I knew right away what he was going to say. Her shunt had indeed failed and she would need to have emergency surgery as soon as possible. I was a little relieved that we knew what was going on and that she would be fixed up and better in no time, at least that's what the doc promised me lol He did inform me that Dr. Wilson, the neurosurgeon that Lilah sees was not available to do the surgery, but that his colleague Dr. Ecker would be performing it. Dr. Wilson is a pediatric neurosurgeon, and Dr. Ecker is not, but they reassured me he was just as qualified (good to know). I would just have to wait for them to schedule the surgery. In the meantime we waited in the ER Triage room for an opening. The whole time I was growing more and more concerned. She still was knocked out cold, nothing would wake her. Her vitals stayed strong, but I was still a nervous wreck. I just kept thinking what if the pressure causes more brain damage? She had been doing so well, and we were lucky that she was developing at a somewhat good rate considering what she had been through, and the severity of her hydrocephalus. I just was praying this wouldn't set her back. It was taking so long for them to take her in for surgery, and with each passing hour, the anxiety was becoming unbearable. Finally, after what seemed like a lifetime, Dr. Ecker, another ridiculously good looking doctor came in and said they could take her in about 7:00 pm. They would just have to get her prepped and ready for surgery. So 12 hours after we had arrived there, they finally took her in. I was able to stay with her in the surgery pre-op room until they were ready for her. They wheeled my poor baby in for the second surgery in her short little life. We were able to stay in the waiting room, which had a neat monitor that had the names of the patients and the time the surgery started and when the patient was brought into post op recovery. The wait seemed like forever when in all actuality it was around an hour and a half. I was so nervous I kept pacing back and forth. I felt like I was going to throw up. I knew it was a pretty uncomplicated surgery, but any surgery can go wrong, no matter how straight forward it is. I knew she was done before Dr. Ecker even came in because I saw that she had been admitted to post op on the monitor they provide in the waiting room. He walked in about five minutes after I had read it on the screen with a big smile on his face, so I knew everything had gone smoothly. He let us know it couldn't have been more textbook perfect, and that the reservoir was clogged so he replaced that, and also shortened the tubing a bit that was in her stomach. Dr. Ecker said that we just needed to giver a couple minutes and then we could go be with her in recovery, and they would get her into a room as soon as one became available.
A short while later, we were led by a nurse down the hall to recovery and there she was sleeping, quietly sucking her thumb. Her beautiful hair was shaved, thankfully she has so much of it that a comb over would do just fine ( : The nurse taking care of her was a tall good looking man who was the nicest guy. I swear I used to make fun of doc shows that have all these good looking doctors, saying it was unrealistic, but honestly this hospital reminded me of that. I never seen so many good looking doctors and nurses lol Anyways, Josh got to talking to him about sealcoating and paving and home improvement, (what else) lol and the time we had to wait for her to get a room went by quickly since we had such a good conversation with him. We did have to wait about two hours because they had to get a room ready for her.
When we finally were able to get in a room, I was nothing short of impressed. This part of the hospital is fairly new. Remember we live in Maine, and the Bush family owns a house in Kennebunkport, so the Barbara Bush Foundation built and funded this huge children's ward at Maine Med. It has beautiful multiple play rooms, family rooms with computers and toys. Private rooms where the kids stay, with a crib, a bed for the parents, and pull out sofa, and two flat screen tv's with DVD players. Each room has its own private bathroom with stand up shower. There were spectacular views of the city of Portland from a giant picture window in each room. Overall, a comfortable and warm environment to stay in when you're going though an uncomfortable and awful time.
The rest of the night she slept well only waking a couple times during the night. I changed her diaper and had the nurse bring in some juice in case she was thristy. Her lips and mouth seemed so dry, so one of the times she woke up I sat her up and gave her a cup of juice with a straw. I have never in my life seen someone suck up a drink so fast. It was almost comical. The next morning she was put on a jello and broth diet, but didn't eat much, although she drank enough liquids for 10 people it seemed. She was much more alert and active, she did not want to sit in the crib, she wanted to move! The pediatric doctor came in in the morning and said as long as she was doing well all morning she could go home that afternoon. They were a little concerned about her weight which was at 17 pounds, small for someone her age. I told her she was almost up to 20 pounds a week prior, but I reminded her that she had been throwing up for 2 days straight. She said when she was released I could follow up with HomeHealth Visiting Nurses and have them come in and do a weight check and incision check. I let her know that I had used Michelle from that agency in the past and would get a hold of her to see if she could come in and check her out. The doc gave me a list of discharge instruction and follow up appointments along with some prescriptions. We were discharged at around 3:30, not even 24 hours from the time of her surgery. She's a trouper! So that was our experience with her first shunt failure. Not as upsetting, nerve wracking, and stressful as I pictured it, but still hard just the same. As Dr. Ecker pointed out, at least I know what to look for. Most people who have shunt failures experience the same symptoms the next time around, I know the signs, and should be able to distinguish it from an illness next time (hopefully there isn't a next time). I have many more wonderful updates that I will be sharing in my next couple posts, I just wanted to get this up and let you know about our experience. Thanks for taking the time to read this!

My baby girl is 1...

2011-05-21T13:01:00.001-07:00

Ok she turned 1 a couple months ago, but I am finding it so hard to update seeing as how I don't have a computer, and i am so extremely busy. I will try to remember everything that has gone on since the last time I blogged.

Lilah had a wonderful first birthday party, surrounded by family and friends. She was given a high chair by her meme, and lots of toys and clothes. Her Papa set up her high chair so she was able to eat her cake by herself. She finished the whole thing. I took a ton of pics and when I am able to fix my computer I will post a whole blog page with nothing but pics ( : however my facebook page has a ton of new photos, so if you ever want to view them you can find the there, just look up Melissa Howard Berthiaume.

Health wise, nothing major, the only setback was about a couple months ago, when she had a slight issue with her weight. Michelle the visiting nurse was still making monthly visits for weight and wellness checkups. I would say around early March she was weighing in at about 18 pounds. When she was weighed the following month she went down to 17.4. We contributed it to a coupe of factors. First off, she had a touch of the G.I. bug, second, she was moving around a lot more, and last she had switched over to regular food, so she wasn't consuming the high calorie formula every four hours. She can't fit much in her little belly, pus the food I was giving her were "healthy foods", great for her body and health, her weight, not so much. We came up with different solutions to try to get in a little extra calories, such as cooking in extra butter, oil, higher calorie health foods, such as avacodo and cheese. She suggested some Pediasure or Carnation Instant Breakfast. Michelle said to try these different options for a week and she would return and see where she was at. If she had lost weight, then we would talk about possibly meeting with a nutritionist. She came back the next week and sure enough she had gained almost a whole pound. The main thing I had tried was the Pediasure, which she loved, but we also didn't want her gaining weight like crazy, so I just cut back to eight ounces a day which equals about 250 calories and 9 grams of fat. She followed up a second time, was still steadily gaining weight so officially dismissed her, no more visiting nurse! We did have a little scare with a MRSA infection, it started out as a little bump on her diaper line, and within days was a massive ball of pus, swollen up the size of a marble. I brought her in and they lanced it, and gave her a topical and oral antibiotic. thank god it didn't turn into anything worse.

Switching over to "normal food"has been an easy transition, she pretty much likes anything I give her. She has started to self feed and a week later she was a master at picking up anything on her tray. She is also drinking out of a sippy cup with a straw, for some reason she can drink out pof a straw just fine but has trouble with a standard sippy cup, most likely because she has a hard time tipping them. She has recently learned to hold her own bottle and drink it, as long as she's lying down.

New accomplishments through therapy include, as I mentioned, the self feeding, and drinking out a cup. We taught her this by starting with what her therapists call The Bear. It is basically a honey container with a straw sticking out of the top. It is easy to suck from and easy to squeeze in case she needed a little help. As it turned out she didn't need any help, she took to it right away, and we practiced it with her for a couple weeks prior to buying a sippy cup. She is able to kneel at a stool and keep her balance. She is coming to sit unassisted, I am so proud of this milestone! We always clap and make a big deal when she does it, so now every time she sits she looks at us with a big grin and starts clapping, looks like she's proud of herself too! She is creeping on her stomach, and even gets up on her knees for a split second, I honestly wouldn't be surprised if she starts crawling within a couple months. It seems like all of a sudden her motor skills have improved dramatically within a short amount of time. She is saying mama, dada, baba and has been making all kinds of silly sounds!

Doc appointments included a follow-up with Dr. Berman. We didn't take long at Berman's, because he came in, took a quick look at her, had her follow some objects, lights, etc, and he was amazed at the improvement of the Nystagmus, and her focusing. He said she seemed to go slightly cross eyed at times, but other then that he was happy with what he saw. We are going back in 6 months to see how she is, how she's seeing, and make sure we're still seeing improvement. Her one year physical went exceptionally well. Dr Landes. was impressed with her overall weight gain, head circumference, growth, everything. I mentioned the weight loss and she said not to worry, as long as she is going up on the charts and steadily gaining weight, I shouldn't worry about it. She was also impressed with Lilah's eye improvements, and thought cognitively and developmentally she looked great. She had her vaccines, poor baby, and her last Synagis shot!

Every morning when I get her out of bed and I get a big smile and a mama, it is the most amazing feeling in the world. My heart literally melts everytime I see her toothy grin, which now includes a top tooth! I want everyone to be able to see lots of pics, so I will gather a bunch and post as soon as my comp is fixed. Thanks for reading my blog and for eveyones continued support and prayers, it means the world to me!

Big Girl Lilah

2011-02-26T12:55:00.000-08:00

Lilah is now 11 months old, but it has been a couple months since I updated so in the meantime she has had her 9 month check-up, and her evaluation/check-up at the preemie clinic. Her visit with Dr. Landes, her pediatrician went smoothly, she is growing as she should, and is still on the charts. Around a year, Dr. Landes informed me, she will expect Lilah to stop playing "catch up" and just grow at a normal rate. Her head circumferemce is still growing, and although her head is a bit on the small side still, it's nothing to be concerned about. The doc was extremely impressed with Lilah, and admitted to me that when she first saw her, she would have never predicted that she would be doing this well. She has far exceeded their expectations. That's my girl!

A couple weeks later she had her appointment at the preemie clinic. Chevelle and Ethan had a dentist appt. at the same time as Lilah's, so because we have one vehicle, Josh brought them to the dentist, and I was dropped off with Lilah at the clinic. When I arrived at the clinic, I didn't have to wait long and was seated in an office and was told that Dr. Rock would come in and speak with me, but first the nurse weighed her and measured her height. DR. Rock came in and explained what they would be doing, and it basically consisted of a physical exam, a cognitive test, and a meeting and an exam with a physical therapist to see her progress in that area. I probably was talking to Dr. Rock for a good half an hour before any kind of exams began. She was trying to explain everything to me and get a background, ask questions, etc. She talked super fast so I was just trying to take everything in, but she is an amazing doctor and is very helpful. She asked me if there was any services I needed help with, social security, food stamps, fuel assistance whatever. She also wanted to let me know about great programs that are out there for kids with dissabilities like The Easter Seals, and the Cerebral Palsy Association (if she ever recieves that diagnosis). I could potentially use these services in the future, and they provide wonderful things for free such as horseback
riding lessons and swimming. She gave me many useful tools, that could have a positive impact on LIlah in the future. While I was grateful for all this, I was worried that everything was taking so long, because Lilah was already starting to get restless, and we hadn't even started the exams. Finally she said we would start the cognitive test with the psychologist and save the physical exam for the end. She did well during the testing as far as not crying and getting upset, but it was very hard to get her to do the things they wanted her to do. I think the fact that it was a room full of strangers and she has stranger anxiety contributed to that. Some of the tests she tackled just fine, like when they had her grab certain objects or reach for them. They stood behind her and called her name to see if she would respond to it. They had me hide from her view, then come back into her sight to see how she reacted. They had me play pattycake with her, and a few other games to see her interaction with me. The physical therpapist did some stretching with her and observed her on the floor for a little while, and then gave me some exercices that might be helpful to do with her, which most of the stuff she suggested we have already been doing. She also wanted to know what we have been doing with her in OT and PT. They were unable to give me any testing scores because their computer system was down, but they said I would be getting a full report in the mail (which I am still waiting on). The psychologist (I can't remember her name) did let me know that she will probably score low on the cognitive tests because so much of it is sight based, and we are not exactly sure what her limitations are as far as sight. Some of the sight tests included looking at certain pictures, although I'm not sure what they are expecting of her when she looks at the pics. That is why I am hoping for the report in the mail soon, and Amy said she would help me go over it in case I had any questions. I am supposed to bring her back when she is 18 months for a follow-up.

So new accomplishments: Lilah can completely roll over front to back and vice versa, this to me is a huge accomplishment, because we have been working so hard to help her meet this goal. It is also how she gets around, while other babies crawl and creep, this is her means of transportation lol She is tolerating being on her tummy and can reach and play with toys on her belly. She can also sit up now
completely unsupported for up to 10 minutes at a time. She can't get into the sitting position by herself, you have to place her there, but she
has the strength to sit there for extended periods of time. I can tell when she is getting tired of sitting there because she will start to extend
her head backwards, like she's trying to gently fall back. When this happens I usually lay her down and give her a break. Karen had me
purchase a couple toys that were more in her age range because she is starting to get frustrated and bored with the rattles and toys that are
more geared toward a 4-7 month old. Karen thinks that Lilah's cognitive skills far exceed her motor skills, so that is why we are seeing a little bit of frustration with her. She wants to move around and play with the more advanced toys, but she simply doesn't have the motor skills to
do so. Although we do see slight frustration, Karen is surprised we don't see more. She thinks Lilah is very intelligent, and she can't imagine
how frustrating it must be for her, not being able to move her body the way she wants to.

Last week I recieved a call from Dr. Wilsons office saying they wanted Lilah to have a routine cat scan to check up on things, make
sure her shunt was functioning properly. Of course they wanted her to go without eating after midnight in case we needed sedation. Although
the appointment was early in the morning she was still very cranky, irritated and hungry by the time they took us in to the MRI room. I
informed the radiologist that the last time we came they laid her down and allowed is to feed her the bottle while Josh talked to her and kept
her calm. He said since that seemed to work last time, we'll give it a try this time. They put the vest on Josh and I waited in the room with
the Radiologist, Josh fed her the bottle, but then she started coughing because she was laid down so flat. That caused her to flip out and
start screaming and trying to wiggle out of the contraption they had her strapped into. The radiologist went out and started moving the giant
bed back and forth, back and forth and sure enough the rocking motion put her to sleep. He came in and took the picture, which took a
minute or so and she was done. He said that works like a charm everytime ( :.

The month of February wasn't a great one for Lilah as far as her health was concerned. She had high fever on and off which led me to bring her to her docs positive she had an ear infection. Luckily she didn't. She also had a touch of the GI bug and had diarrhea and was throwing up for a couple days. She seems to be feeling a lot better since the beginning of this month, and she's back to her old self.

Lilah's first birthday is coming up and we are having a princess themed party. I can't wait! I can't believe she's already a year. Upcoming appointments include an eye appointment with Dr. Bermen and her 1 year physical with her pediatrician. I will update after these appoinments. I want to apologize for the messy blog, I still have no computer and I'm blogging from my phone.

A year ago today...

2011-02-25T17:33:00.000-08:00

I am going to post an update on Lilah in a couple days, I just wanted to post briefly because today it has been exactly one year since we received the diagnosis of Hydrocephalus. I would like to apologize for any grammar and spelling mistakes because I am blogging from my phone due to my computer still being down. I will try to correct them as best I can, but bloggin from a phone is a pain in the butt! First off, I can't believe its been a year, it seems to have flown by. Second, looking back I can't believe how far she's come from where she was. I remember everything about that night crystal clear in my head, the excitement of getting to go to another ultrasound, and how I couldn't wait for Josh to take me out to our favorite sushi restaurant afterwords. I remember the complete and utter shock when the doc told me coldly and casually that there was something seriously wrong with Lilah's brain, and how the outcome was pretty grim. Reading my post from that day brings tears to my eyes, I was so scared of many things, but I think my biggest fear, was the fear of the unknown, and that everything was completely out of my hands. Being that I'm not a godly or religous person I didn't even have the power of prayer or the hope of a miracle to fall back on. I was pretty much hopeless. Reading blogs helped me a little, but even so, I found parents having to deal with so much medically and emotionally and these people seemed much more "together" than I was. I thought there was no way in hell I was strong enough to handle it. Even though I am reluctant to admit this I even had a discussion with Josh abbot adoption, that is how sure I was that this was something I was never going to be able to deal with. I have many regrets about the way I handled things, even if it was out of fear and grief, but I wish so badly I could go back and comfort myself and tell myself it will all be ok. I would say don't waste your nights being up all night crying, because soon your days will be filled with a sweet little girl with an insanely goofy smile. I would remind myself that I am a strong person that has lived a hard life full of obstacles that I have always been able to overcome. You honestly never know how you are going to handle something until it is thrown your way, and having a child born with disabilities is one of these things. I wish I could tell myself how I am going to have a baby girl that is strong and resilient and keeps pushing through the pain and overcoming obstacles that all the experts predicted she wouldnt be able to overcome. Most importantly I think I would tell myself that when you look at her you won't see Hydrocephalus, you won't see a disability, you will just see Lilah, beautiful, goofy, blue eyed, crazy haired Lilah ( : I wanted to end this by stating that one of my main reasons for writing this blog is to show other parents that may have recieved a recent diagnosis of Hydro that it is not the end of the world and that there is hope and light at the end of the tunnel, if I can make one person feel even a tiny bit better, then it will hold a far better purpose than just getting my feelings out. I'll be blogging soon with more great new about Lilah's progress!

The Holidays Are Here!

2010-12-07T15:53:00.000-08:00

This post was originally supposed to be in Dec. but my computer crashed, I have been without one for awhile, in the meantime I jotted down my entries the old fashion way, with a paper and a pen (gasp) so while this post will show todays date (feb 5) it was originally written sometime toward the end of December...

It's been hectic with the holidays, and I haven't had a reliable computer in months, so this post may be a bit long.

Lilah's first Halloween was so much fun, although a bit cold. Thankfully her costume was nice and warm. She was a pretty pink flower. We headed down to Mass because Halloween in Josh's family is kind of a big deal, and an excuse for everyone to get together with all the kids. We walked around Josh's aunts house as we do every year. She was her usual easy going self despite the long time outside in the cold.

We were in Mass again for Thanksgiving, which we were happy to be able to make another trip down to spend with Josh's family. I bought pureed turkey and sweet potatoes so Lilah would have her very own Thanksgiving dinner.

We headed down to Mass yet again for an early Christmas with the in-laws. Josh's mom and aunts put on an x-mas party every year, and this was Lilah's first. Chevelle and Lilah had matching Santa dresses and they looked adorable.Lilah seemed a little leery with all the strange faces, but she was well behaved the whole time, in fact she napped through most of it. Christmas day was spent back up in Maine at our house, and we sat Lilah in her Bumbo surrounded by all her presents. She seemed disinterested, but as most babies do, found stuffing wrapping paper in her mouth to be a good time.

In the past couple months, between all the holiday activities, Lilah has been making progress in every area. It can seem a little slow at times, but Karen her PT pointed out that as long as they see progress, even if it is a bit slow is a good sign. They grow concerned when babies plateau at an early age, and this hasn't been the case with Lilah. In therapy, there had been a four or five week period where she screamed through her entire OT and PT sessions. It was so sudden, she went from being comfortable with Karen and Amy to completely melting down, acting like they were complete strangers sent to torture her. It can be hard when your baby acts like she's in pain, not to rush right over, pick her up, and comfort her. Karen thought that wouldn't be productive, because then she would learn that when she cried, that meant her mommy would come "save her" from the mean old therapist. I knew she wasn't in pain because the exercises and activities they had been doing with her, are the same ones I do with her on a regular basis without incident. They just kept working through the screaming and getting in as much as they could. Amy said it was most likely a phase and she would get over it. Sure enough, as Amy predicted she did. One day Amy walked in and Lilah had that look on her face like she was going to lose it, whimpered a couple times, then eventually started smiling and playing with the toys Amy provided for her. Lilah's OT sessions have been moved to twice a week because she thought she could really benefit from it. Lilah has learned to roll from stomach to back, we are working on the other way around, but so far it hasn't happened. I am thinking that even if she was physically capable of it, she would probably avoid it like the plague, because she hates being on her tummy so much. She can now sit unsupported for a couple minutes here and there if she has her Boppy to support her back. Her balance is getting there, but she likes to fling herself back a lot which results in the loss of her balance. It is also hard for her to coordinate sitting with playing with toys, it's easier for her to sit if she isn't playing with anything.

A couple weeks ago she had her cardiologist appointment to see if the chamber to her heart had closed. She also had a tiny hole in her heart that they wanted to check out to see if it had closed. Thankfully her heart was perfect and healthy, and she never has to go back again, unless there is a specific problem.

Healthwise she has been doing so-so, no major issues. Just quite a few ear infections, fevers, and runny noses. It seems like she is constantly stuffed up. I hope her health improves when the winter months are over. Her Pulmonologist said this winter will be the test with her. If she can make it through this winter relatively unscathed, then the following winters should be a breeze. She also has started a monthly vaccine called synagis, which protects her from RSV, a deadly respitory virus that affects preemies. Jan is a busy month with a few appts., including her 9 month check-up and the preemie clinic. I will try my hardest to update as these appointments happen instead of waiting so long between posts.

As far as Lilah goes, she is certainly developing a little personality. She is constantly smiling, babbling, happy. She has such a sweet manner about her. Her gummy, goofy smile can't help but brighten your day. She is an absolute joy to be around, we all love her so much, and are thankful to have her in our lives. It's been a rough year but I would go through it again in a second, because she makes me so happy.

I hope everyone had a wonderful holiday, and below I included a couple Holiday photos. They're a little mixed up, but the first one is Lilah surrounded by her presents (spoiled baby). The second one is Daddy feeding Lilah her Thanksgiving dinner. The next one is Lilah in her Halloween costume, and the last one is Lilah eating some wrapping paper. Enjoy!

9 Year Anniversary!

2010-10-12T12:41:00.000-07:00

I have a blog post about Lilah I will be posting in a few days, I just wanted to add some pictures before I posted it, but in the meantime I wanted to write about the past 9 years I have spent with my amazing husband. I met Josh at a time when my life was going nowhere. I was in and out of trouble, I had no goals or ambition, I wasn't being a proper mother to my oldest daughter Brittany. He had been a good friend to me in the previous 3 years before we started dating, but I saw him as no more then that. I always admired him as a father to his son Tyler because Brits dad could of cared less, anad was in and out of jail. I thought to myself how refreshing that a young kid can step up and be a dad, when so many adults out there can't. Josh was like a breathe of fresh air that came blowing into my life when I felt like I was suffocating. Pretty much right off the bat I knew there was something different about him, that he actually cared. I had been in horrible,abusive relationships all of my teenage years, and was so used to being used that I was in shock that someone was treating me so well. Almost right from the beginnaing he told me that he was going to take care of me and would always be here for me. He told me that he could tell that I was a scared little girl, and that he would help me grow into a mature, responsible adult. He has gone above and beyond his promise, never once breaking it and I feel like there is no way I could repay what he has done. I honestly can say I don't know where I would be without him, but I can guarantee my life would be nothing like it is now. Our relationship has without a doubt been pushed to it's limits. We have been through hell and back, but have always managed to come out ok, with our relationship intact. There have been times where I even doubted we could make it, and there have been times I have pushed him away, thinking that I didn't deserve happiness and love. I am so glad he stuck it out with me and didn't give up on me. He has given me the most amazing family, his family he had before me, and our family together. Lilah came at a time when our love wasn't as strong as it had been in the past, and she has just brought so much joy and happiness to our lives. I believe she was sent here for a reason and I have a feeling many people's lifes are going to be enriched from knowing her. I just want to say to him that you are an angel to me, someone that has saved me and guided me through the darkest points in my life. I love you...

10 years ago...

6 month check-up, and many other appt's.

2010-10-12T12:11:00.000-07:00

I know Lilah's technically almost 7 months, but I haven't had much time to update. She had her 6 month check-up with Dr. Landes. She weighed 13 pounds 2 ounces and was 24 inches long. She is now officially on the charts! She is in the 5th %, which doesn't seem that small to me because Chevelle has always been in the 5th%. Her head circumference jumped up to a point where it is now following a normal "curve" on the growth chart. I believe it was 38 inches in diameter. Last visit it had kind of hit a plateau, and that is why she sent her to get a cat-scan. She said that the growth was very promising, and we no longer had to worry about that at this time. She had all her shots, which she wasn't very happy about (surprise, surprise). She noted that the Nystagmus that she saw at her four month visit was much less noticeable at this visit. They asked me all the milestone questions, and the only ones they asked that she couldn't do was rolling over, and transfering an object from hand to hand. Dr. Landes told me since her she was gaining weight normally, I could take her off the Neosure formula, and put her on the formula of my choice. She also told me I could start introducing cereal and solids. I was excited about this because I always enjoyed feeding my babies baby food, and it seems like a step in the right direction to "normalcy" lol. I asked her if I could take her off the poly-vites, because I wasn't breast feeding any more, she said she wanted to test her iron levels first, and if they were normal then we could take her off them. The test came back that she was slightly anemic, which is really common in babies born prematurely, so she said to continue with the vitamins and at her next visit we would talk about taking her off them.

A week and a half prior to her check-up she had gone to the pulmonologist, and she was also happy with how she looked and sounded, lung-wise. I was told to decrease her meds even more, so now she is on very minute doses of meds. She told me to continue oxygen as we have been, and check back in a month. A little frustrating, but honestly the time seems to fly by, so I am praying it will be different at the next appointment.

Somewhere between all these appointments, I can't remember the dates, Lilah was brought into her docs because she had been running a fever. It happened to be Friday night, and I was debating on what to do. With my other kids I probably would have waited until Monday then brought her in, but in Lilah's case, a fever could mean an infection in her shunt. I believed that this was definately NOT the case, especially since she had a cold, but you really want to just play it safe, and not take any chances. So I ultimately decided to call her doc Sat. morning. I was put through to the nurse that was on call that weekend. She agreed since she was a preemie and had a shunt that she should be seen right away. The practice that she goes to has many offices, and they actually have one in South Portland that is opened on the weekend. She told me to come right over, and the diagnosis was an ear infection, so she was put on amoxycillin for 10 days. First time getting an illness in 6 months, not too bad ( :

We started working wiuth Lilah's new therapist Amy. Susan was right I do like her a lot, although I admit I do really miss Susan. Amy is young and pretty and bubbly. So sweet too. She has a three year old and an 18 month old, and literally lives right down the street about half a mile. She pretty much continued where Susan left off, so all of the therapy sessions have pretty much been the same. The one new thing that she wanted to try was infant massage. She is a licensed infant masseuse, and asked if I would like her to teach me. She said she thought it would be good for Lilah as far as relaxing her before her sessions, and loosening her muscles a little bit, and also as a bonding experience for Lilah and I. The following therapy appointment she started teaching me and Lilah seemed to really enjoy it. Amy cautioned me beforehand that not all babies like to be touched like that, and sometimes they have to have to be massaged a couple times so they can get used to it. She was surprised at how well she responded to it since it was her first time. Her therapy has been coming along smoothly, really nothing new to report on that.

I had her neurology appoinment coming up which was the one that I was a little on edge about. For one Susan hadn't had the best things to say about Dr. Rioux, and on top of that I was worried he was going to give me doom and gloom or something lol. I know I am a little paranoid. Josh came with me which I was happy about, he always thinks of good questions to ask, and he retains all the info really well, which I have a hard time doing. After waiting FOREVER, Dr. Rioux came in with a med student. My first impression of him was a good one, he seemed really nice and was reallly good with Lilah . He went over a little of Lilah's history with me, and also what my concerns and questions were. The main reason she went to see him was the shaking of her eyes, which as I 've mentioned have improved greatly. He noticed it a little bit, but said they looked ok, he also had to take my word for it because he hadn't seen her when she was having the severe shaking. He told me as long as they seemed to be improving that we would just kind of keep an eye on it over time. He did some neurological tests, had her follow objects, pulled her up to a sitting position, checked her reflexes. He was really impressed with her progress, and said he was pleased to see that she was "talking" a lot, and was really expressive, responsive and interactive. He asked if there was any motor problems, and I told him my main concern was the tightness in her left arm, and how she had a strong preference in the right arm. He went on to tell me that it made sense that she would have problems with that side of her body, because the majority of the fluid was in the right side of the brain. Since the halves off the brain control the opposite side oif the body, it made sense she would have motor control problems in that side. He did tell me that it looked like she still moved it and seemed able to use it, so that was a good sign. I told him her therapists were aware of her limitations in this arm, and we were working on it in theraoy. He mentioned that some therapists use immobilizations therapies, which basically consists of constricting the good arm, so they are forced to use the bad one. I said I would mention it to Karen her PT. I was able to see her most recent catscan, which was taken in August, anbd he pointed out the areas that still had a little bit of fluid in it, but nothing to be concerned about. The ventricles are still a little big, but compared to how everything looked in the previous cat scan taken when she was born, he said the difference is remarkable. Her catscan she had taken after birth, was pretty much all dark spots, where the fluid was. This one you could see was filled with brain lol. The way it is supposed to look. It is a really good sign when the brain expands to fill the space that was once filled by fluid. We had a talk about motor issues and he said that may not be present for some time still. There is still no way of telling how she might be in a couple years, including if she has Cerebral Palsy, or the severity of it. He said only time will tell, which I've known this from the beginning, nothing new there. He has seen this severity of hydro and worse, where the children do fine, and he has also seen less degrees of hydro, where the kids are worse off, so no way of telling yet. I was also warned that seizures can pop up at anytime, and he gave me a pamplet on what to look for and what to do in case she has one. He said just keep doing what we're doing, and be optomistic, and hopefully she can continue making the progress that she has so far. We made a 6 month follow-up appointment, to check in and see how she is doing.

I will end this by saying Lilah has started solids and has been tolerating them wonderfully. She gobbles them down, with no problem. She started off a little messy, but is now a pro, and can eat without making too much of a mess. She is a little piggy! She has tried peas, carrots, sweet potatos, bananas, pears, and apples. Her fave seems to be sweet potatos. Karen did warn me though to really watch what I give her, because she is not as mobile as most babies and is not going to be burning off the baby fat as quicly or as easily. I will leave you with some pictures of her eating her food, they are from when she first started so mind you she made a mess!! I also included a pic that I absolutely love, because she is flashing that huge grin that brightens everybodys day!

National Hydrocephalus Awareness month!

2010-09-16T14:36:00.000-07:00

It's actually been almost a month since her eye appointment, but I am just finding time now to sit down and blog about it. In the future I am going to try my hardest to update as soon as Lilah has had an appointment, because I find I have a hard time remembering exactly what was said and done. As most people know I have a horrible memory, so it is best if I write it down as soon as it occurs. I will try my best to recall this past month.

I was warned by Susan that Dr. Bermen wasn't the friendliest guy, not that that surprises me too much, seeing as how 90% of the specialists I deal with up here are a-holes. We pulled up to the Maine Eye Center in Portland, which just happens to be this massive building. There was a parking lot full of cars. You walked in and there was actually an information desk to direct you where to go and a map of the place. I guess they do everything there including lasik eye surgery and other eye related surgeries. Dr. Bermen is a pediatric opthamologist, so of course there was a waiting room full of adorable children with big glasses lol Initially we didn't have to wait that long before they called us in. The nurse asked us some standard questions, like what are concerns were. The doc came in and did some tests that pretty much involved looking in her eyes with a light, turning the light on and off, i'm assuming to check how they dialate, and spining her around and around on his lap in a chair. I guess he did this to see how bad her eyes shake, because I mentioned this to him. He immediately noticed the nystagmus ( her shaking eyes). In fact they were quite shaky, the most I've seen them in awhile. In a way I was glad they were doing this because, I was afraid he wouldn't get to see first hand what I was talking about. He noted Intermittent Nystagmus which basically means her eyes shake but not all the time. Nystagmus is a constant shaking of the eyes. I couldn't read him too well but he seemed to be concerned about what he saw. The whole time I was just thinking please whatever it is, just don't let her be completely blind. I dodn't find him to be a kerk per se, but he was kind of cold and uncaring. I'll never understand why doctors choose their specialty in pediatrics if they have no bedside manner, anyways, the nurse put drops in her eyes to dialate the pupils, then sent us out to the waiting room to wait for them to dialate. This took about 45 minutes in which she was able to sleep. Let's just say she wasn't too happy with the drops and screamed until she was blue in the face. In the meantime, while we were waiting, he had her latest cat scan faxed over. We were called back in and he took another look at her eyes. I'm thinking well do you know what the hell is going on or what? He says well the eye itself is fine, the optic nerve wasn't damaged from the pressure, blah blah blah The eye looks great and is healthy. Ok, but does this mean she can see? Well he said she could possibly have a visual impairment, but if she does it has nothing to do with the eye, it has to do with the way the brain processes the images her eye is seeing. The eye is essentially like a camera lens it takes the pictures and the brain deciphers what the "camera" is seeing. The hydrocephalus might have done damage to that part of the brain. So his advice: go see a neurologist. So basically I have no answers. Then again he was using huge medical terms and I didn't understand half the words that came out of his mouth. But this is what I got from it, Josh too. While he was explaining everything to me he mentioned that he had the results of the cat scan. I said well I 've been waiting for the results is it normal? He told me that I should talk to her neurosurgeon about that. So I'm freaking out thinking something is seriously worng, so I said well I want to know what it says. He told me it said something about the collapse of the ventricular system or something to that effect. I had read up on this before and read that this can happen in the case of over draining. This was the reason he ordered the scan in the first place, because he suspected over draining. I asked him why they wouldn't call me with results like that, he said it could be that he just wasn't planning on doing anything about it, but told me I should call them anyways just to be sure.

When we arrived home, I had Josh call Dr. Wilson to see about the cat scan. We called at 4:30 which is a half hour before they closed. Josh explained the situation to the nurse, and snapped at him telling him I know nothing of this, I don't know what you're talking about. She said she would have Dr. Wilson call us back. Well they never called us back, so Josh called them first thing in the morning, and a different nurse returned the call, and told us Dr. Wilson told her to tell us the cat scan was quote unquote "perfect" It was exactly how he wanted it to look. So I'm assuming the stuff that was on there is no big deal. Again, I am no doctor so I guess I just have to trust what they say.

So as you all know the past couple of months there has been concern for Lilah's eye sight. The main reason for this is the fact that she hasn't been tracking objects, and her eyes are always shaking all over the place so it seems like she is having a hard time focusing. Well I am happy to report that in the past three weeks this has changed dramatically. I noticed her eyeing a toy when I had her on her little play mat that my friend Tammy had given me. It has a big mirror dangling from the middle and a couple big hanging toys on the side. I wasn't sure if this was a coincidence, but then I saw her reaching and touching the toy. She started smiling and wouldn't stop! It was so cute, and I was so proud of her. The next thing she noticed was the mirror, as soon as she saw her refelxion she let out a big grin and was cooing non-stop. My sister was here and she saw it too. We couldn't believe how cute she looked. Ever since then the second I put her on it she starts to smile and coo. The following Wednesday I showed Susan what she was doing and she was absolutely thrilled. This is the first time she has actually witnessed her focusing on something and we could tell she was looking at her reflexion and responding to something visual instead of just sounds. Since the mirror is directly above her, it keeps her head at mid-line (looking straight ahead) which is what we have been trying to do for the past couple months. She told me this was really great to see. It pretty much proves that she's not completely blind. I mean it doesn't tell us how well she's seeing but at least we know she's seeing SOMETHING. Towards the end of her therapy session, she started getting real fussy, we couldn't calm her down. Well Susan placed her on her mat and she instantly stopped crying and let out a big grin. Susan said in her 30 years as an OT she had never seen a baby respond so happily to one of those play mats lol She hasn't made too much progress being on her tummy, she still hates it, but she is holding her head up better in her bumbo, and tolerating her time in it much better. I finally feel like I can see a vast improvement in her, and it gives me even more hope for her future than I already have. On a sad note, Susan, her OT, is leaving us. She is going on medical leave indefinately. I have grown so close to her in these past four months, and feel like she has helped Lilah tremendously. I am going to miss her a lot. She told me my new OT is a woman named Amy. She told me if she could have hand picked her new OT she would be it. She assured me that I will like Amy even more than I like her. I guess she is fairly young and has two small children, and Susan thinks I will get along good with her. I am going to meet with her next week.

After much thinking, and much advice from countless people involved in Lilah's care, I have decided to apply for dissability for her. In the past I felt like this might be a crutch, and would keep her from pushing herself and by applying I am somehow admitting she is going to be disabled lol Then her nurse told me that she knows parents that file for dissability on their premature infants, and get approved. She said especially since we are going through financial hardships right now, any little bit will help. So I finally relented and filled out an application and did an over the phone appointment. To say the application was long and tedious would be an understatement. I had to give names, addresses, and phone numbers of all her docs. I had to put what she saw them for, when she last saw them, when she was seeing them again. What treatments they provided.

Dates of visits, hospitalizations, cat-scans, ultrasounds. I had to list meds she was taking. I could go on and on. Anyways they said I should recieve an answer in about 4 to 5 months. Well I think that prett much sums up the past couple weeks. I want to end this by saying September is National Hydrocephalus Awareness Month, and there is so many people who have never even heard about this condition ( I was one of these people), we need to spread awareness and bring more attention to hydrocephalus, here is some interesting info I would like to share:

The National Institutes for Health, which controls most of the federal funding for these types of conditions states that the number of people who develop hydrocephalus or are currently living wiht it is difficult to establish since there is no national registry or database of people with the condition. However, experts estimate that hydrocephalus affects approximately 1 in 500, which makes hydrocephalus as common as Downs Syndrome or Juvenile Diabetes, yet the publis is largely unaware of the condition.

Facts about Hydrocaphalus

Approximately 1 million people have hydrocephalus in the U.S.

There are believed to be 180 different causes

There is no cure and very little research. The NIH spends 60 cents per person with hydro per year compared to 300 per person per year with juvenile diabetes though the prevalence of the disease is the same.

The standard treatment, a shunt, was developed in 1956 has a 50% failure rate after just two years which is the reason why so many have to have multiple brain surgeries just to stay alive.

60% percent of children with hydro are not independent as adults and require assistance. (this is the first time I've read this stat, so not too sure on the accuracy)

50% percent of children with hydro score 80 or below on standardized intelligence tests. (same wtih this one).

It costs the United states 1 billion per year in health care costs to treat hydrocephalus.

I hope someday we can increase the publics awarness and raise funds for research, so spread the word!!

MRI, Ultrasound

2010-08-22T13:46:00.000-07:00

Dr. Wilson's office called me with a MRI appointment for Lilah, it was scheduled for Thursday the 12th. A couple days prior a nurse from Maine Med called me to ask some questions and give me instructions on what to do prior to bringing her in. She just asked basic questions about her medical history, and said that there may be a chance we have to put her under general anesthesia if she happens to be moving around too much for them to get adequate pictures. Since there was a chance of that, I was not to feed her breast milk sooner than 5 hours before her scheduled MRI. I could give her water two hours prior, and no formula after midnight. I had lost my wallet a couple days before I talked to the nurse, and she told me I would need an ID when I brought her into her appointment. Since I didn't have one Josh came with me to show his proof of ID. I fed her around 4 am, but by the time we arrived, and were seated she was starting to get a little fussy. Luckily we didn't have to wait long, and the nurses were amazing, they kept going on and on about how gorgeous Lilah was and of course commenting on her wild hair that is always sticking up. The nurse told me that her MRI should only take a few moments, they only needed a couple quick pics, and that anesthesia shouldn't be necessary. When we walked into the room, they had this device that they strap the babies in to keep them still, it's almost like a little pappoose that keeps them snug, then velcro straps to hold it together, as soon as they put her in it she started crying, and when they tried to strap her head in she was flipping out. I told her she was really hungry, and she said since she probably wasn't going to need to be put under I could feed her. As I was discussing this Josh was rubbing her feet and shushing her, and it seemed to do the trick because she quieted down. The nurse told Josh to keep doing what he was doing and threw a vest on him so he could stay in the room with Lilah while they took the pictures. She pulled me in the room where the images pops up on the computer, it was pretty cool you could see her skull and where the shunt was. They were right about it only taking a minute, then she was done. They would send the pics to Dr. Wilson and he would contact me if soemthing was wrong.

Her ultrasound went off without a hitch too. The radiologist and technicians were commenting on how good she was. They performed the ultrasound on both hips for a good 10 minutes on each side and she didn't even fuss. They said ususally with babies they have to get a couple technicians to hold them still. The radiologist said it looked fine to him but he had to double check with the other radiologist. He came back in and told me it definately was normal. That was a relief, one less thing to worry about.

She has been making great strides in both OT and PT. She has really good head control and Susan told me she was ready for a Bumbo, which is a seat that supports their backs and allows them to gain strength in their muscles. I purchased one at a second hand store, seeing as how a new one cost 40 dollars. I didn't want to put her in it myself until Susan was here, so when she came last week she had me place her in it and she did a really good job! She looks so cute in it. I will have to get a pic of her in it and post it up soon. We have also been using different textures because Lilah seems to be very hearing and touch oriented, she gets more excited feeling things and listening to things than looking at toys. She brought in a koosh ball for her to feel and a piece of Mylar to put under her blanket and when she's on it and touches the blanket she can hear it crinkle. We have little balls with different textures on them and drag them up and down her arms and legs. This gets her moving with excitement. There is some concern about her eyesight and how well she is seeing, or if she even sees at all. Neither her PT or OT can tell me for sure either way. She has been tolerating tummy time much better, both Susan and Karen noticed that she seems to tolerate the tasks and exercises so much more than before. She will do a lot in a shorter period of time, instead of having to drag it out because she keeps shutting down. I think last week she only had one little shut down and that was towards the end of the therapy. We have been putting her in side lying position which allows her hands to be in front of her, and makes it easier to reach for toys. If they are flat on their backs it is harder to keep hands "mid-line" because of a little thing called gravity lol

Monday she had her Pulmonary appointment, and she is off the oxygen all day except for feedings, and she is still on at night. They tested her potassium levels, which came back a little high, but she said it was nothing to worry about. My next appt. is in 5 weeks. She told me that 2 weeks prior I was to cut her meds in half. the Spirololactone and chlorothiazide will be half doses and the potassium and sodium chloride will be taken away altogether. I feel like she is just getting closer and closer to leading a semi normal life lol I am also tired of all the appointments.

I have her eye appointment with Dr. Burnham this Tuesday, so I will update, hopefully with good news. This is the appointment I am dreading, it will be a real blow if she is blind. I know whatever the outcome I will be able to handle it, I just hate anything that is going to make Lilah's life harder. As if life isn't hard enough. Well I am hoping and praying for good news. We just have to think positively. Below are some 4 month pictures. The first one is of her insane hair do (at its tamest)The second one is Lilah enjoying her tubby time. I have never seen her more happy than when she is in her tub ( :

4 Month Check-up

2010-08-02T14:22:00.000-07:00

Lilah had her four month check-up last week. She is up to 9 pounds 14 ounces and she is 21 and 3/4 inches long. Her doc says she is growing as she should be. I brought up all the issues that Susan (OT) and I were worried about. Unfortunately she didn't get to see her shaky eyes for herself because she was screaming so much she didn't have her eyes open. I asked her if she thought I should bring her to see the optometrist that Susan knows, and she told me she would rather Lilah see Dr. Burman, the opthamologist that examined her at the hospital. She said she would call him, then call me with an appointment. Along with the weight and height measurements, they also do head circumferences to make sure that it is following a nice even curve on the chart, just like the height and weight. She informed me that Lilah's head is actually smaller than it should be. She also said she had a hard time finding her soft spot, and was worried that maybe her skull was overlapping and fusing which wouldn't be a good thing. She asked me when Lilah's next follow up with the neurosurgeon was and I said sometime in October, she told me she would call Dr. Wilson and explain what was going on and see if he thought she should go in earlier for a cat scan. He did want to see her in a couple weeks to see what was going on. I guess they are afraid her shunt may be over draining. She has her hip ultrasound in a couple weeks to see how her hips are doing so this month is a busy month for Lilah as far as doctor appointments go. She had her four month shots and was miserable for a couple days. I gave her some Tylenol for the pain, but she was still pretty sore. She also mentioned that normally she would suggest trying solids namely cereal, but thought we should hold off a couple months because of her prematurity.

Therapy has been coming along, both Susan and her new PT Karen definately see improvement in her. She seems stronger, and is starting to explore her hands and some toys. She loves sucking on her fists and thumb (just like Chevelle did). She reaches for faces, but hasn't shown much interest in toys. Karen says this is probably because she just discovered her hands so it's gonna take awhile before she realizes she controls them and can touch them and feel them. Her focus seems to be much better, she will keep her gaze on you much longer, and is always smiling and cooing. She is definately the most happy first thing in the morning when she wakes up. This is also my favorite time with her because the kids are usually still sleeping and we get some quiet alone time. She is going to bed every night really well, and sleeps right through the night without a peep.

I had to go down to Mass to pick up my mom, and while I was down there visited some of my family members that I haven't seen in awhile. I was able to see my great aunt Bev, who I hadnt seen in 3 years, since my grams funeral. She has a ton of old photos around her house of relatives, and I noticed a beautiful black and white photograph of a baby in a long white gown, with a fairly large head. I immediately guessed that it was her brother who I knew died of hydrocephalus when he was 12. I had never seen a photo of him, and felt sadness because he had to suffer through it because they obviously didn't have shunts back then. He basically lived with it until the pressure in his head was too much on his brain. I also felt very grateful that we
live in this modern age and Lilah is able to have a chance at life because of all the advancements in medical technology. It is sad knowing if she had been born back then, her fate would have been death. I also think it is neat that she has this common bond with a past relative, that had two totally different outcomes, and is a prime example of how far the medical world has come. We should all be grateful for this. It gives me hope for the future too, that something may be done for these kids possibly in utero before the fluid has a chance to do so much brain damage, or even having the ability to reverse brain damage. You never know, if we have come this far in 50 years, imagine another 50. I will probably update in a couple weeks after all these appointments, unless something significant happens between now and then. I am also hoping to post some new pictures of LLAH.

Been Awhile

2010-07-19T17:45:00.001-07:00

I have been having a hard time finding time to update my blog. Busy with the kids, busy with Lilah, busy with life. Lilah is coming along wonderfully. She is up to 9 1/2 pounds as of last week. She is following her own curve on the growth chart, but if she keeps up the good weight gain, she will probably be caught up in no time. She is the perfect weight for her length. Therapy has been going good as well. I had a long talk with her OT about cerebral palsy, and how even if she has it, she will be able to greatly improve her quality of life with OT and PT. I asked her if she thought that Lilah might have it, and she said she did see some tone that might be indicitive of it, but that is not set in stone. She also noticed (which I have also) that when she looks to the side her eyes make a little shaking motion, this could be nystagmus( an eye disorder), it could also mean that her eye muscles aren't quite developed yet. Regardless, she suggested I have her eyes checked out by this opthamologist in Windham. He does one free eye exam before a child turns one, it's called an Infant See. He is also a long time friend of Susan, and with my permission will discuss with Susan things we could try that might be beneficial for lilah. We are still working hard at trying to gain some head control, and strengthening her sholder and neck muscles, she seems to have a hard time with this when she is laid flat on her belly. It is easier for her when we roll up a towel and place it under her armpits, or when I lay her on my chest. It gives her something she's interested in looking at (my face) (: She is moving her head pretty much equally from side to side now, she no longer prefers the left side. She does however tend to swing her legs to the left side a lot. This is not a good thing, since she could develop a curvature in her spine. I have to straighten her out whenever I catch her doing it. We are working on having her follow objects with her eyes, she does a good job following from her right side to midline (center) but has a hard time tracking to the left. We have been trying various toys and pictures that might pique her interest but nothing seems to intrigue her enough to follow. I have switched arms when feeding her, because she tends to look at me when she's eating, this seems to be helping a little.

Lilah is having much longer awake periods and is settling into somewhat of a schedule now. She takes little naps throughout the day and usually settles in for good around 11:00 pm. This is a good time for me since I go to bed late anyways. Then as long as she has had a bottle right before bed she will usually sleep right through the night, anywhere from 5:30 am to 8:00 am. She was assigned a new PT, because it was so far out of the was for Lisa. I met her new PT named Karen last week. Llilah was completely zonked out cold, so she was unable to work wi-yawns she does and elieve how hard she was to rouse. She was worried about shunt failure. I told her thats normal behavior for her. She responded by telling me that I would know better then her, since I'm with her all the time. I also made the mistake of feeding her right before she came, and that is usuallywhen she is the sleepiest. This week when Karen came I held off her feeding, and she was wide awake through her whole session. She noticed that when she talked to her that she completely avoids eye contact. She was wondering if she did that all the time or maybe just because it was a new face. It's fuuny, because awhile back my sister Kristin noticed this, she's like Melissa she refuses to look at me, but when I took her she stared right at me. I told this all to Karen, and the way she explained it is that she might be a little stressed out or anxious having certain people around or she might be overstimulated so she kind of shuts down in a way. This can be common in preemies, and not un-heard of in newborns. I am what she sees as calming and familiar so she has no problem staring at me. She also told me all the little half-yawns and even some sneezes and facial movements are sometimes the equivilant to a sigh. When she is experiencing a change of emotion,stress, or overstimulation, even happiness and relaxation she might do this and it's her way of letting out a sigh. When she handed her over to me to kind of prove a point she immediately looked at me, stopped crying and did a half-yawn (i'm assuming in contentment) I don't know why, but I find this all super cute (:

My in-laws came up for a week for vacation, and I took Lilah to the beach for the first time. I had bought two umbrellas to put her under out of the sun, but apparently the sun was super strong that day because her face was a little sun burned at the end of the day. I felt so bad. She was miserable, and the fact that she had the oxygen taped to her made it worse. He face was all rashy and irritated so I decided since her pulmonary visit was only a week away, and they were going to take her off during the day after that visit, I was going to take it off and give her cheeks a chance to air out. It had been super muggy and hot for weeks and it wasn't doing her skin any good. I monitored her the whole time she was off for the next couple days and she stayed at 99, 100. Below is a picture of her without the oxygen, look how pretty! I have that pulmonary appointment tomorrow and OT on Wednesday I will try to keep up with my blogs, so then I don't have to cram a ton of info into one, plus try to remember everything that happened. My mother-in-law took the kids back down to Mass with her for a week, which was nice because I was able to have some nice quiet bonding time with Lilah. I did a lot with her, we went to the lake, to the Maine Wildlife Park, Chuck E. Cheese, and out to eat. She was quite the busy little girl these past couple weeks. It is so hard to do these things lugging around a baby and two other kids on top of it. Now I know why some people decide one is enough! Three month pictures below, with the oxygen and without.....

Growing Baby Girl..

2010-06-16T18:33:00.000-07:00

It has been over a week since I updated and Lilah has had a couple OT and PT sessions. Everything is going well with her progress, she is really coming along. Last week Lisa (PT) was working on her hips and hamstrings. Lilah was actually awke this time. She noticed, as well as I, that when she moved her right hip, it seemed to be quite uncomfortable for her. She was really screaming. She also noted that she seemed to move the other side a lot easier and more frequently then the right side. She said that I should mention it to the doctor next time she had an appointment. I asked her if she thought I should call sooner, since her next appointment wasn't for another two months. I also mentioned that she had a hip ultrasound scheduled for the end of July. She proceeded to do some more stretches with her, and then turned her on her stomach. In this position she seemed to be moving it just fine, and equally as much as the other side. Lisa said that was what she wanted to see, so she would hold off on calling the doc. She said that it could be just because it is really tight. She wanted me to continue to do the exercises that she had taught me. Other then that she said she was definately gettign there, and making progress. Her OT Susan came last week and again Lilah was sleeping so it was hard for her to do the things that OTs do, such as getting her to track objects with her eyes, and have her lift her head and turn it. She suggested that if she was sleeping during her next session we might try to change the appointment to earlier in the morning when she might be more awake. Susan did as much as she could with her sleeping. Michelle the nurse came and weiged her she is up to 7 pounds 7 ounces, still a little teenie thing, but she's getting there. She said she's looking really good, and that she was on vacation the following week, and said since I had an appointment with the pulmonary doc, it wasn't really necessary for a nurse to come in that week.

This past week was a little rough as far as Lilah's sleeping habits. I don't know what it was but she just cried and cried all night. It almost seemed like she was in pain or uncomfortable. It was odd to me, because she will be content in her crib during the day. She will lie there for a long time wide awake and not fuss, and she was awake all night for 3 or 4 days straight. Then, of course, she slept all day becuase she was exhausted. I was trying to rack my brain and figure out what could be bothering her. I set up her little music player on her portable crib, it plays clasical music, and has relaxing nature sounds. It also vibrates hard enough so that she can feel the vibrations when she is lying in the crib. That seemed to help a little, along with a pacifier, but she was still fussing on and off all night. I was thinking that it could possibly be her meds, but she takes the same meds in the morn and has no problems. The only thing she takes at night are her poly-vitamins, so I thought this might be the problem. I remember when she was in the NICU they said the vitamins can upset the babies stomachs. I switched the time I give her the vitamins from 9 pm to 12pm. I gave her the other meds at 9 like usual and put her to bed. She fussed a little bit on and off until 12:30 fell asleep until 5, ate, then slept until 10. I had also left the TV on, because Josh suggested she might be so used to the noise and light during the day that it could be upsetting to have it so dark and quiet. Who knows if it is a big coincidence or not that she slept ok, we'll just have to wait and see.

Her appointment with Dr. Cairns, the pulmonary doctor was on Monday of this week. Josh wasn't available to come with me, so this was the first time I had to take her to an appointment myself. I can carry all her stuff with two hands, it's just a matter of positioning everything on my arms in a comfortable way. It was heavy and awkward, but I was able to handle it. First thing they did was weigh her and she was 7 pounds 9, so up a couple ounces since the nurse checked her out a couple days prior. They also took her length which was 20 inches. She aksed me if she had any episodes such as de-sats, coughing and spitting up when she's eating etc. She said her lungs sounded great and she had no pulling or retracting when she takes a breath. She looked fine, but they wanted to keep her on the O2 for another month, then check back. When Lilah goes back in for her follow-up, they will probably have me start taking her off during the day and see how she does. I was a little dissapointed that we couldn't try this now, but we're getting there. She also wanted me to continue her meds, and get some bloodwork done to check her electrolytes, to make sure her diuretics aren't depleting her potassium and sodium and such. They will also check to make sure she isn't getting too much potassium.

Moving on to this week, she had another session with Lisa, who was really excited to see that she was awake again. Two week in a row! She said to me wow she's a totally different baby when she is awake and alert. She had her on her belly to see if she would do some head lifts. She lifted her head pretty far up and turned it side to side, she said this was really good progress. She also noticed that Lilah seemed to be getting more comfortable being on her belly, she HATED it before. Susan came in today, and was pleased to see her awake. This was the first time she worked with her when she was awake. Susan is so great with her, and was telling her how pretty she was and going on and on about her pretty eyes and lips. She had her moving her head mainly to the right, because this is where all the tightness is, You can tell how it bothers her when we move it to that side. Again this is the side her shunt is on. She doesn't think it's the shunt itself that is tender because when you press on it, it doesn't bother her. It almost seems that there is a certain point that it hurts her when she is turning her head, then when she is past that point she is ok. She had her on her belly and she did more head lifts. She also had her on her back and had her tracking objects with her eyes and getting her to move her head over to the right side. She did rather well with this. She also seemed to prefer to look towards the window, maybe because it is so bright over there. She also seems to respond better to bright colorful toys then noisy ones. She told me to try to get her to turn her head by putting objects over there for her to look at. She showed me how positioning her arm extended out and the other arm pulled close to her body caused her to turn her head. This is a reflex thing. It's pretty cool that you can control her head movements by positioning her arms. She was also impressed with her progress, and we will continue to work on all the things we talked about. Putting all this medical stuff aside, she is an absolute joy to have around. I could be in the crappiest mood and I just have to look at her and it instantly cheers me up. She is extremely easy going and has such a sweet disposition. She is starting to get a little personality, and I am excited to see her progression and growth in the upcoming months.

A Good Week for Miss Lilah...

2010-06-08T16:36:00.000-07:00

Lilah had another busy week full of therapy and appountments. She had her shunt check-up with Dr. Wilson on Thursday. Josh left work and was able to accompany me, thank god, because again there were many things to carry. I will be so elated when she is off the oxygen and monitor. Every body was super nice at the docs. We had to bring Ethan because I couldn't find a sitter, and Dr. Wilson's staff were very kind to him. They gave him stickers and talked with him and asked him questions. I was in the office for quite awhile when the neurosurgeon walked in, but it wasn't Dr. Wilson, it was another doctor I had never metr. I guess he works there with Dr. Wilson. He checked out her shunt and where her incision was and said everything looked good, but didn't really elaborate. He asked if she had any seizure activity, and I told him no. I did mention that she has a slight leg tremor. The way I explained it was when you scratch a dog and they thump their leg, it's kind of like that. She seems to only do it when she's stretching. He asked me if I had a follow-up with Dr. Allen (the neurologist) and I said no. He told me that he didn't think it was something to be concerned about. I did some research on this and read that this can be a common thing in preemies and even babies so that put my mind a little at ease. I also read that tremors can be a sign of brain damage too, but I think I am reading into things more than I should just because of the possible trauma her brain might have sustained. So anyways he left and Dr. Wilson came in, He is one of the nicest Doctors I have encountered on this journey. He puts his hand on your shoulders and looks you straight in the eye, and really makes you feel comfortable and at ease. He is the type that calls everyone hun ( : So he takes one look at her and immediately says This is exactly what we want to see, no swelling, no fluid build-up, absolutely perfect. He said he was so pleased with how everything looked. He siad her belly incision looked beautiful, and it seemed like everything was going great. He told me there was of course still a chance of failure or infection, and went over the list of signs to look for. He wanted to see her in six months for a cat scan and follow-up. He told me all I needed to do now was go home and love her. I tild him I would have no problem doing that ( :

Her visiting nurse Megan came on Wedneday, and did the typical routine of taking vitals, and weighing her etc. Her scale said she weighed 7 pounds 1 ounce, and if that were accurate would mean she only gained an ounce since her doctor appointment the previous week. She said that it could be that their scales are slightly different, or they might have not lifted her oxygen monitor cord up. Anyways she will be weighed with the same scale this week so I am hoping for a good weight gain, she has been eating like a little pig so I would assume she gained. She asked me how her sleeping and eating was going and I told her it was going well. She took a head circumference which was 34.5 so that is good it hasn't gone up. It ended up being 35 the folowing day at Dr. Wilsons, but she said that people can take the measurements slightly different so a half a centimeter usually means nothing. She said Lilah looked good, and she will be back the following week.

Her PT Lisa came on Thursday, but wasn't able to do too much with her due to Lilah being off in dreamland as usual. She did say that her hips seemed better, and her hamstrings a little looser, so she said I was doing a good job with the exercises. Lilah wasn't too happy with Lisa's therapy session she kept crying everytime she did something, then when she would stop she would go back to sleep. She was putting her on her belly to try to get her to lift her head up, and push up on her shoulders, this strengthens the shoulder muscles, but again all Lilah wanted to do was sleep. She said usually at this age they will stay awake for the session because they're being poked and prodded, not Lilah though, she has her own plans. She stressed to me how important "tummy time" is for shoulder strength, and head control, and to make sure I have her do this whenever possible. She also told me to continue with the exercises we had talked about. Her OT Susan called me that morning and told me that her and Lisa discussed that it would be best if they both came every week (which I had already been informed of by Lisa) I told her I thought that was a good idea too, and I would see her on Wednesday, she said she wasn't able to make it that week, but she would come this week.

Friday I took a ride up to Augusta, to pick up my friend Shaina. I know her from Mass, but her dad lives way up in northern Maine, and she was visting him. Her step mom drove her down about 6 hours to meet me in Augusta which is about an hour and fifteen minutes north from me. I decided to take Lilah with me, to see how she would do on an extended trip, she did good,slept the whole way, big surprise. Shaina has a 6 month old baby named Sierra, so Lilah had a little playmate. Of course Lilah seemed like a peanut compared to her, not only because Lilah is so small for her age, but because Sierra is really big. She weighs 19 pounds, so she's a little chunky, but soooo adorable. All she wanted to do was grab at Lilah and eat her hands haha. We all took a trip down to Old Orchard beach Friday night. We took the kids to the arcade down there, and I just wheeled Lilah around in her carriage while Josh played with the kids. Luckily the place was deserted to there was plenty of room for Lilah's huge carriage. Lilah slept through her first big outing of course. She had also taken a short trip to the mall with me that week, so she had a very adventurous week. It feels great to take her out and treat her like a "normal baby" I am getting more comfortable with getting her ready and taking her out. I don't have that feeling of oh she's so fragile, I think we should just stay home with her. It was nice walking around with her in her carriage, and showing her off to everybody, athough she has raised some eyebrows, with her oxygen tank and monitor in tow lol She has PT and OT this week and Megan her nurse is coming. I also have a planned trip to Chuck E. Cheese with her and the kids, do I will update st the end of the week.

2010-05-31T16:48:00.000-07:00

So I had a long and eventful week to say the least. I barely have a minute to sleep and breathe let alone blog. As I previously wrote, Lilah had her Occupational Therapy appointment on Wednesday, followed by a check-up at her pediatricians. Her Occupational Therapist is a real sweet lady named Susan I instantly liked her, and she was so good with Lilah. Right off the bat she asked me if I had any concerns, and I told her the only thing was how she stiffened up her legs, and didn't seem to bend them in a fetal position. She said this was a totally normal preemie thing. When they come out early they haven't quite learned how to be in that fetal position, she was born before she ran out of room, so her arms and legs were outstretched. She told me that everytime I caught her doing this, gently push them into the fetal position, this basically trains the brain to do it on it's own. She had a long list of milestones that we would check off as she did them. She has accomplished a couple of them already which is good since technically she is only a week. That is the age she kept associating with Lilah because that is how old she would of been if she had been born on time. That is why they will give her a couple month window as far as reaching her milestones. I told her that the doc gave her a 50 to 60% chance of Cerebral Palsy, so I am sure she will be looking for signs of that as soon as she can. So far she said she didn't see anything that would cause her concern. She set up an appointment for the following week and left. I sat around for a couple hours then started to get ready for her doc appointment. This in itself is no easy task. I had to make three trips to the car to carry everything I needed for her. Thankfully Josh was able to come with me, because it's not like
I can make three trips to the car once I arrive at the docs. The previous couple of days I had been worried about her because she seemed extra fussy and gassy. She was not eating nearly as much as she was when she first came home. My biggest fear was that she was not going to be able to gain weight while she was at home. I had never been to this pediatrician before, I had to switch all my doctors when Josh was laid off because all the docs we had gone to won't except MaineCare. They are affiliated with Maine Med the hospital I gave birth at. Dr. Landes is the name of her doc. I like her a lot she is friendly and took the time to answer all my questions thouroughly. I was also pleased to find out that she already had Lilah's history there in the computers and pretty much knew everything about her. It saved a lot of time explaining things, I'm sure. Since all the docs are affiliated with Maine Med, they all communicate with each other on a regular basis. She knew when all her follow-up appointments were, and with who. The same with her visting nurse, OT, and PT. They also talk to her docs and to each other, and figure out the best plan of action. This also means no refferals, beacuse again they're affiliated. The nurse weighed her, and I was relieved to see that she weighed 7 pounds, she was 6 pounds 10 ounces when she was weighed by the vistiting nurse exactly one week prior. I mentioned the lack of appetite, and the bad gas pains she seems to get. I mean sometimes she seems like she is in excrutiating pain. She said newborns go through spells where their appetite slows down considerably. She also mentioned how the hot weather can sometimes make them eat less, the past couple days were in the upper 80's. She said as long as she's passing the gas, then she will be ok, it is when they don't pass it that it can pose a problem. I also told her that she only goes to the bathroom every couple days or so, and by the time that comes around she is really uncomfortable, she said this is because preemies haven't fully developed the stomach muscles that help push everything out, so it may be harder for her to go. She also has a herniated belly button, which she said will get better on it's own, and it may get worse before it gets better. I always thought her belly button looked funny, but I just thought she just had an outie. She showed me her growth on the charts, and she isn't even on it ( : but she said as long as she is following her own growth curve it is fine, and usually you will see them on the charts at 6 months to a year. She estimated that if she were born on time, she would be in the 50 percentile which would be perfect. Lilah was given her immunizations, so now she is up to date. A hip ultrasound was ordered by Dr. Landes because of her extreme breech position, she said while they felt ok, she wanted to make sure. She said considering all that she has been through she looks great.

The next day was Physical Therapy, and she was scheduled to come around 11:30. Her name is Lisa, and I didn't like her as much as her OT, she wasn't nearly as friendly, she was pretty much all business. She was excellent with Lilah though, and that is all I care about. She noticed that her hamstrings were tight, and that her hips felt ok but seemed a bit shallow. She showed me many exercises to do to loosen everything up, and to get the hip to rest nicely in the socket. This includes laying her on her tummy and puttin her legs in the froggy postition to help the hips. She also told me to roll up a blanket and put it behind her back while she is laying sideways. This helps the hips also. Both the OT and PT discussed with me exercices to strengthen her neck muscles so she will be able to hold her head up ok. This involves putting her on her tummy and putting an object in front of her head to try to get her to lift her head and look at it. It also helps when she is awake, to sit her up right on my lap, and not support her head, so she will try to keep it up herself. She has been doing a pretty good job at this. The OT and PT were going to speak amongst themselves to determine how often they would be coming in. At first they discussed alternating every week, but after evaluating her thought it would be best that they both come in once a week. This is also subject to change throughout the upcoming months, as seen fit. They told me that I'm the boss and if I feel it is too much, or to intrusive, I can ask them to cut back. If I feel she has had enough therapy for the day, or it seems to be stressing her out I have the right to have them stop. I asked them to estimate how long they would be coming in for, and she said they will be coming until they get her mobile, which pretty much means walking (if that is realistic for her). So all in all a busy week for miss Lilah.

Off the topic of Lilah for a moment, I wanted to mention the loss of my dear cat Ginger. Josh found her on the side of the road on his way to work Monday morning, apparently she had been hit by a car. When Josh called me with the news I was so devastated, I had never had an animal that I cared so much for, it also felt like another blow on top of everything else. My first instinct was to spare my children the pain, so I told him that I didn't want to tell them, that we would just say she ran away. Of course after I thought about it I knew we would have to tell them. It would of been cruel for them to constantly wonder where she was, and when she was coming back. In telling them, it would give them closure, they could grieve and move on. I thought it would be nice that we could bury her in the back yard, and they would be able to "visit" her whenever they felt sad. I had the worst feeling in the pit of my stomach all day knowing we would have to tell then when Josh came home. I wanted to leave and leave him to do the dirty work, because I can't stand seeing them upset. I knew it would be the hardest on Chevelle, because she is super sensitive, and a huge animal lover. She cries when an animal she barely knows dies. I won't go into details, but it was gut wrenching to witness their reaction, and I hope it is a long long time before I have to do that again. I knew after they buried her, that it was a good lesson on grief and death, and that it is a lesson everyone has to learn at some point in their lives. I unfortunately, have known from a very early age about pain and loss, so of course I wanted to keep that from them as long as possible. Most people think I could write the book on grief, but in my oppinion it is the complete opposite. I am the type that puts it in the back of my mind, doesn't think about it or talk about it, and I pretty much pretend it never happened. I know this is so unhealthy, but believe me this is the only way I get through my days. That and finding sick humor in everything ( : I am grateful my kids were able to experience and go through the normal stages of grieving.

On a lighter note, it was Memorial Day weekend this weekend, and the in-laws came up. We had a cookout yesterday, with family and friends, and it was just a fun relaxing day. Lilah had her first trip outside, if you don't count the trip home from the hospital and to the docs. I figured the fresh air would do her good. I couldn't tell if she enjoyed it or not, because she slept through the whole thing. Memorial day we had another cook out because Kristie and Kate, and my bro-in-law and father-in-law came up. It was another beautiful day, and Josh was able to be there, so that was a plus. It was a day that made you feel grateful for family and friends, and lucky that we have such a wonderful support system. I have included some pics of her first big outing and holiday (that she was present for). Lilah has a busy week full of therapy and appointments, so I will try to blog at the end of the week to catch everybody up.

SHE LOVES THE OUTDOORS, SHE'S SMILING ( :

AUNTIE KRISTIN HOLDING HER

ALL DRESSED UP AS A BALLERINA ON MEMORIAL DAY LOL

Lilah is Home!!

2010-05-20T18:44:00.000-07:00

After 54 days in the NICU, we finally were able to bring Lilah home. Josh met me at the hospital Tuesday in hopes of being there when they discharged Lilah. I brought her a cute little winnie the pooh outfit to go home in. She was wide awake when I got there so I got to spend some nice quality time while waiting for all the steps we had to go through before discharge. I had a feeling it would take awhile because everytime I have been in a hospital or my kids, it seems like it takes forever to be discharged. They had to go over the medicine instructions again and she had to get one last exam by the neonatologist on call. Dr. Medlin happened to be the one, and I like her a lot she is a real sweet lady. The nurse went over the signs to look for in case of shunt failure, and they gave me a bunch of stuff ot take home, diapers, formula, wipes, pacifiers, bottles, blankets lol I left with two giant bags full. I also had to wait for the car seat coordinator to get there to show me how to properly install the car seat and travel with the medical equiptment. I was supposed to have this done the previous day, but I had forgotten my car seat base, so they had to do this that morning. She came down with me and put the base in, then she told me to put the travel size oxygen under the seat, and buckle the moniter into the front seat with me. They do this for two reason, the first is in case you get in an accident, they don't want a heavy monitor slamming around hurting anyone, and second is because they want it to be in sight of you so you can monitor the baby. Dr. Medlin gave me the dischrge papers which had specific instructions on who I needed to call for follow-up appointments, this was really helpful because there is quita a few of them and I didn't want to forget anything. She wrote down all the phone numbers and when I had to see them. She also made me a month worth of copies of a daily medication list. It has the list of all her meds for the day under the time she's supposed to take them, then when I administer them I just cross it off. It makes it go smoother, and that way I will be sure of what I gave her. So the time finally came to take her home, unfortunately Josh had to take off back to work, so I started feeling a little overwhelmed and emotional because they left me to hook her up to the oxygen and her monitor and everything and I was afraid I would screw something up. I also was being hit with the reality that this is it you're taking her home and the responsibility of making sure she's healthy and safe falls on you, and not a bunch of docs and nurses. The nurse helped me carry the enormous cart of stuff I had down to the car, and once I got in the car and started driving I felt a lot better.

LAST PIC IN HER HOSPITAL CRIB

GETTING READY TO GO HOME!!

GETTIN READY FOR THE CAR RIDE HOME

Kristin met me at the house to help me unload all her things. My niece Jenna was there and my nephew Jack. This was the first time they saw her. It was cute the way they interacted with her. My dog Lulu came over and sniffed her a million times, but that was it. I set up her portable crib in my bedroom next to my bed, so I could monitor her in the night.

PIC OF HER NURSERY THAT HAS BEEN READY FOR HER FOR MONTHS LOL

PICTURE OF HER FIRST TIME IN HER PORTABLE CRIB

It was a strange feeling knowing I could just pick her up whenever I wanted and feed her and change her, and do all the things I have been waiting for for almost two months. She did amazing her first night I set my alarm for every three hours to wake her up and feed her. This was one of the discharge instructions, that she eat evey three to four hours, since she is on a 3, 6, 9 ,12 med schedule I figured it's just easier to feed her every three. I put the meds in just a little bit of breast milk, so she will drink it all while she is hungry, then when she finishes that I give her the rest of her feeding. It is quite tiring doing all this, administering meds, feeding and changing her, then pumping after I out her back to bed, so basically everytime I get up with her I am up for a good 45 minutes every three hours. Trust me though I am NOT complaing, I am so happy that I get the oppurtunity to do all the normal mom stuff. The day she came home the visting nurse agency called and set up an appointment the following day. She came in and did vitals and asked questions on how she is doing, how much she is pooping, eating, etc. She weighed her and she is up to 6 pounds 10 ounces, a growing girl! She will be coming once a week to check on her progress. She also informed me that the OT and PT would be contacting me shortly to set up appts. After she left I called and made all her follow-up appointments. She has to see the pediatrician in a week, a neonatologist in two weeks, the pulmonary doc in two weeks, the neurosurgeon in two weeks for a shunt check-up, and a cardiologist in 6 months. Lilah will have a busy schedule for the next couple months lol. I was dissapointed when I called the pulmonary doctor, becase they will ultimately decide when she gets off the O2 and the diuretic medicatation, and they couldn't fit her in for the two week follow-up, we're looking at about a month. It is such a pain having her hooked up to all this equiptment. I have to wheel this heavy tank around, just to go in the other room, and I have to move her monitor back and forth also. The neo doc discussed her being on the O2 wuth m before I left. She explained that most parents worry that they are using oxygen as a crutch, or that their child will become addicted to it, and she stated that it is in fact the complete opposite. Being on the oxygen will help her not be on the oxygen essentially. It helps to develop brain tissue, and lung tissue, and muscle tissue. She is on such a minor amount. She compared it by saying that if you or I were admitted into the hospital needing oxygen, we would be on 6000 cc's and she is only on 25. Here is a picture of her annoying equiptment below:

OXYGEN TANK

OXYGEN MONITOR

Lilah's second night home was a little more rough, she was whining and grunting until about 1 in the morning, it almost seemed like she was in pain. I think she might have a had a little tummy ache, because in the morning after she went to the bathroom she seemed a little more comfortable. Yesterday the OT called to set up an appointment. She asked me to pick a day that was the most convenient and that would be the day she came every week. I told he it didn't matter since I was pretty much available anyday, so we decided on Wednesday. She will alternate every week with the PT. I am looking forward to meeting with them, and it is reassuring that I will have a professional to evaluate her, and know if there seems to be something "wrong" then we can get to work helping her with it as soon as possible. Other then being a very exhausted mommy, she is such a sweet baby, when she is alert and looking around, she is so cute. She always has an amused look on her face, and she seems to be taking everything in. She has also been smiling too. It seems weird to see her smiling and looking so alert when I just brought her home, but I have to remember she is almost two months old, she is not the brand new baby you usually encounter when you come home with one. I am sad that I missed being a part of every second of those two months, but I am trying my hardest to make up for it, and I will have the rest of my life with her so what is two months in the grand scheme of things lol Unless something significant happens I will probably post Wednesday after her OT appointment and doc appointment to let everyone know how they went.

Finally coming home

2010-05-17T16:43:00.000-07:00

It's been a week or so since my last post, and a lot has happened. As I previously wrote, we thought Lilah was going to come home late last week. I went to see her Thursday, she had been moved into the Continuous Care Nursery (CCN). It is basically set up just like the NICU, except they're not as monitored closely as the NICU babies. They also focus on getting all the proper things in order for the babies to go home. The neonatologist on call came in to talk to me and told me she wasn't going to go home until early the following week. She was definately well enough to go home, but there were many things I as her caretaker had to learn before I could take her home. He was extremely helpful, he sat down with me face to face and said ask me any questions that you might have, and I'll answer them the best I can. I really appreciated it because it gave me a chance to voice some concerns I had. As you all know I posted a picture of the goals she had to obtain before discharge and most of the goals that the hospital had to take care of were met, such as the Hep B shot, the car seat angle test and the hearing screen (both which she passed) All the other things were goals that I had to get done, and the reason why she couldn't come home last week, these things would take a little bit of time. One of the goals was to meet with a discharge planner. Since I wasn't at the hospital when she was, she called me at home. She is a really helful person to have around because she set me up with all the services I need. She set me up with a visiting nurse agency who will be coming to the house frequently after she is released to check her vitals, growth, to see how she's doing. They will also be the agency that will be sending out Physical Therapists and Occupational Therapists as she needs them. She set me up with the agency that will be supplying her oxygen called Apria. She also set me up with the Neonatologist who she will be going to for a follow-up appointment. His name is Dr. Rock. She called in all her prescriptions to a specialized pharmacy called Apocathary by Design. Her medicines have to be mixed at a compound pharmacy, they can't be mixed at a regular one. This was also a big reason she couldn't go home last week, her medicines would not be ready until Monday. I had to watch some DVDS which I got accomplished last week. I had to learn how to draw up all the medicines, because obviously they don't come in neat little syringes all ready to go like at the hospital, and I had to meet with Apria to learn how to run the oxygen tanks and transport them. It seems like a lot of stuff to learn but it's all pretty straightforward. When I went to see Lilah Friday, she was in the middle of her physical therapy and she showed me some exercises to do with her to loosen up her muscles, and to strengthen the muscles in her neck. She is already able to hold her head up pretty good so that's a plus. She said when she first started working with her her legs were always stiffened upwards, she wanted them to be more fluid. She started exercises to loosen them up, and she said she could already see a great improvement.

Fast forward to this morning I arrived there pretty early because this was the day I was supposed to get a lot of these goals accomplished. Apria was supposed to meet me at 3. The nurse was going to show me how to draw up the meds, and the car seat coordinator was going to show me how to install the base properly and transport the oxygen. She also had a head ultrasound scheduled and an echocardiogram. They had already done the head ultrasound by the time I arrived, but I was present for the echo. I had written in one of my previous blogs, that the chambers of her heart had not closed yet, so they wanted to do a follow-up. The cardiologist came in afterwards and said all but one had closed, so they wanted to see her in 6 months to check on that. The nurse showed me how to do the meds, and gave me the schedule for them. Again, pretty straightforward. Apria came in and taught me how to hook up the oxygen tank, and how to change it to the portable one. She showed me how to change the nose canulas and how often to clean them. I also learned how to attatch the oxygen sensor, which is basically a little band-aid type thing on the bottom of her foot that goes into the monitor, which will beep if her sats go below 90. She told me the large oxygen tank will last me six days, and when I get close to running out I have to order a new on which they deliver to the house. It has a little knob on the side that lets you know when it is getting low. Ahe warned me that I shouldn't travel with her unless I absolutely have to because these tanks are basically tiny missles, so the less I travel the less chance of an accident that could send one of these flying. I told her I wasn't planning on jetsetting around town with a newborn anyways. They can't see her being on it for much longer anyways. The neo doc came in and asked if I was prepared to take her home, because tomorrow was the big day! I said Oh I am more than ready. So I think that is all the up to date news. I will post tomorrow after I get her home if I am not preoccupied with her cuteness, and I am not too busy smothering her with affection ( :

Coming Home!

2010-05-11T08:05:00.000-07:00

Really good news from the NICU team, Lilah will be coming home within the next couple days. I knew the day was comign soon, but when I arrived at the hospital yesterday with Randy and Ryan, the nurse came in and told me she tried calling me because she wanted to discuss some thing we have to do before she comes home. I asked well when will that be, and she said hopefully by her due date, which is Thursday! First thing I have to do is take in her car seat today, so they can do a carseat test. They are going to have to check out my jeep to let me know the best way to transport her oxygen tank. It has to be secure because if something were to hit it or puncture it, it turns into a giant missle (her words). Both Josh and I are going to have to watch the CPR DVD, and a DVD on Shaken Baby Syndrome. They said they would try to fit her hearing screen in last night, so we can get that out of the way. She'll also be needing her hepatitis B shot. We will have to go through all her medications and when and how to distribte them, and she will be going home with an oxygen tank and a monitor so we will have to learn how to do all that too. She asked if I am going to be ok with all this, and I said I don't care what I have to do I just want her home. She said it'll be a lot of work, and I probably won't be going anywhere anytime soon, but this is they way to get her home. I am a little nervous about having her home, but so excited. I was telling Josh last night, it feels like we are going to pick up a kid we adopted, it feels somewhat like we didn't even have a baby. When you give birth and take a baby home you never lose that connection, because they go straight from being inside you to being beside you. Not that I don't feel a connection, but it's almost like you have to get to know your baby all over again. Strangers have essentially been her parents over the last month and a half, and now I have to step into that role. I have come to realize over the past weeks that they know more about her then I do. I am hoping that everything will come natural and easy and it'll feel like she was always here. I am also a little nervous about bringing her home here to the hectic and crazy environment that is the Berthiaume household. I am hoping that she won't be too stressed out. Then again she won't be getting poked and prodded on a daily basis, so maybe she will like it better. Who knows. I will also have many follow-up appointments in the next couple months, so it looks like I will be having a busy summer. I am actually looking forward to the sleepless nights and the diapers and responsibility This is what I have been waiting for!!

Happy Mother's Day!

2010-05-09T19:35:00.000-07:00

While Lilah is not home for this Mother's Day like I had originally hoped for, I think the day is coming soon. I went into the hospital Friday morning, after I had my six week post natal check-up. They were just starting morning rounds, and I got to talk with the neo doc on call. He told me that she has made great progress and she should be coming home soon. They might even move her into the step-down nursey in a couple days. She has been taking about 90% of her feedings by bottle, and he was really impressed with how she has been eating, considering she just had major surgery a week and a half ago. Her sutures in her head came out last week, and they will be taking the stitches in her belly out within the next couple days. The nurse said they would be giving me a homeward bound folder to look over with info that will prepare us for taking her home. They also told me they might send her home on oxygen, because if we wait until she is weaned she could be in there for a while longer. If it comes down to the only thing keeping her there is the oxygen, then they will just send her home on it. They asked me if I would be willing to do that, and I told them at this point I'd be willing to do anything, as long as she can come home. Yesterday when I arrived there they had a paper hanging above her crib that was titled Discharge Goals and had a list of things she has to accomplish in order to come home. Next to each goal was a space to enter the date she accomplished that. So far the only one checked off was the maintain tempature in an open crib one lol Here is a picture of it below:

It's kind of hard to see, but it sure seems like a long list. The nurse pointed out that a lot of them are things WE have to do like watch a CPR video, talk to the Discharge Planner, have a doctor set up for her etc. Some of the things are easy like getting a Hepatitis B vaccine and a hearing screening. She has to pass a car seat test which means she has to sit in the car seat for the duration of the ride home (25 minutes) hooked up to monitors and see how her body responds to it. The nurse reassured me that she would meet all these goals real soon. I hope so!

Mother's Day was today, and Josh and the kids did everything to make sure it was special. Josh took Ethan to get me a necklace yesterday, and Ethan couldn't wait to give it to me so I recieved it a day early. Chevelle made me something in school along with a poem she wrote. It was really sweet. Tyler made me a card and cleaned my house (possibly the best present of all). Even Kat gave me a card. Today when I went to pick up Josh at his shop he had flowers and a card for me. I always enjoy getting cards from him, because he rarely gives them. This time he wrote something really sweet and heartfelt and it made me cry. The best part of Mother's Day was seeing Lilah and I even recieved something from her (: The director of The March of Dimes made this for all the moms in the NICU:

Here is a Mother's day photo courtesy of Chevelle:

I have to say by far this is the best Mother's Day I've ever had because I feel like my family is finally complete. Tyler is up with us, and Lilah is here. I always felt that even after I had Chevelle and Ethan there was supposed to be someone else. I don't have that feeling this time around. We have finally built the family we always wanted. I have to say though it won't feel 100% complete until Lilah is home, and of course there will always be a spot that is empty because Brittany isn't here, but that spot will never be filled up by another child, it is meant to stay empty. I truly am in a good place right now, and I don't think I would be in this place if it wasn't for the journey we have been going through with Lilah. Something like this really puts things in perspective. It is time to go to bed, hopefully the next time I post it will be with a discharge date!

Making Progress

2010-05-04T19:28:00.000-07:00

It's been awhile since I updated so I will try to remember everything that has been going on. There is not that much to report, mostly good news thankfully. Lilah is gaining weight fast, she is up to 5 pounds 10 ounces. Her neurosurgeon stopped by and said that she is healing beautifully. The shunt seems to be working well, and her head size has gone down a centimeter. The ultrasound showed that her ventricles are still large, but they haven't increased in size since the shunt was placed. She was almost completely off the oxygen before her surgery, but the surgery seemed to set her back a bit on her progress with this. It is a week after her procedure and she is almost back down to what she was before the shunt was placed (basically room air). She has been doing well with eating, tolerating her bottle feedings. She sleeps a lot, which sucks because if she is really zonked out she doesn't want anything to do with her bottle, and she has to eat a certain amount every three hours. So basically if she doesn't want the bottle they don't force it, they just give her the rest in her gavage. I noticed when I feed her I have to stop quite often or her oxygen sats go way down. It is nice to have a monitor to know when she isn't handling it well and I need to slow down. She finally is in a regular crib, it is so nice to be able to see her and touch her without having to stick your hands through holes in an incubator. Below is a pic of her in her crib, they will be sticking her in a metal crib with bars in a couple days:

She's so happy she's in a big girl crib she's grinning ( :

Another bit of good news, she had an eye test today, and passed with flying colors ( : Everyday she seems to be getting stronger. Sometimes I get so down thinking she is never going to come home, but than I look back over the last month and I can see how much progress she has made in that short of time. If she can come this far in a month, I am sure she will be able to come home soon. It's what keeps me going. My original hope was for Mother's Day, that would be the ultimate present. That doesn't look too promising, considering it's next Sunday, but you never know.

Josh has been working his butt off getting this business off the ground. I don't think he has seen Lilah in over four days. I feel bad for him because I know he wants to spend time with her, but he wants to be able to provide for us and pay our mortgage. I am sorry that the burden falls solely on him at the moment. He actually told me the other day that he was jealous that I got to spend all my time with the kids. I just reassured them that his kids will understand when they're older and that they will have nothing but respect for him, knowing how hard he worked to give them the best life possible. I am sure they will have a strong work ethic watching him break his back for his family. It has been hard for us lately with all the troubles, we have been snapping at each other more. It is hard not to take it out on the one you love, when you have so much stress in your lives. He keeps telling me that these are the times when we need to be on the same page, and stick together. We have been through some tough times in ten years, and we always manage to pull through, so I know this is just a little bump in the road. He is going to leave work a little early tomorrow and we are going to see Lilah together. I can't wait!! I want to thank everyone again for their support!

Surgery complete!

2010-04-27T16:42:00.000-07:00

Josh and I arrived at the hospital around 9 in the morning. They had her hooked up to an IV to get her hydrated, and had withheld food since 3 in the morning. She was fussy and wide awake just like last time. They told me she would be going in about 10:30. About 10:15 the nurse came in and said they would be up to take her in about half an hour. Josh decided to go down to get a coffee while he was waiting and literally 5 minutes after he left they came up to get her. The male nurse who works with the OR team came up for her. He was a real funny guy, who helped lighten the mood. He told me he was partial to girls because he had four of them, and he loved wheeling the babies down to the OR because everyone oohs and aahs at the them as they're walking down ( : I was going to wait in the NICU waiting room, but he told me that I could walk down with them to the pre-op room. I was hoping Josh would show back up before we went down there, because I knew he really wanted to give her a kiss before she went in. We walked through this maze of corridors and restricted areas before we arrived in the pre-op area. I tell you it is a completely different environment down there. It is so hectic with all the nurses and doctors and patients. The NICU is always so peaceful and quiet. Dr. Wilson was the neurosurgeon who was going to be performing the VP shunt operation. Dr. D'angelo would have been who have done it if she had undergone the surgery the previous Thursday. Dr. Wilson was a sweetheart, who did everything possible to put my mind at ease. He reassured me that he would have made the exact same decision that Dr. D'angelo did in deciding not to do the surgery last week. He said that her fontanelle still felt fairly normal, and that even her head size going up doesn't always mean there is a problem, but they ultimately rely on what the catscan shows them, and it showed a definate increased dialation of the ventricles. The anesthegiologist came in and talked with me for awhile about all the risks, and said that since she is prones to having de-sats, that they were going to give her what is essentially a shot of caffeine in her IV. It will keep her from being overly sleepy from anesthesia. The downside to this is it leaves them really jittery. The OR was so backed up I was in the pre-op holding room with her for about an hour. I had my phone but couldn't text Josh because the OR is located in the basement of the hospital and I had no service. I was hoping someone might send him down to wait with me. Finally it was time for her to go in, I kissed her goodbye and they wheeled her off. The nurse told me she would come in the wating room to get me when she was finished in surgery, and they got her all situated back in her room.

I came upstairs and found Josh in the waiting room, and explained why it took so long. He was really upset because he didn't get to be with her in pre-op. He came back to the room minutes after we went down and asked the nurse practitioner if he could come and see her. She said no because it's authorized access only, he than asked if she could walk him down and she said no. He said she was kind of rude to him, which I found surprising because she has been nothing but sweet to me. We decided to go to a late breakfast because we were hungry, and I knew I would go nuts waiting around. The nurse said she would call us if anything went wrong. We came back to the waiting room after breakfast, and at this point it had been about an hour. We waited another 45 minutes, and I was starting to get worried. Josh said I bet you anything she's in the room and they forgot to tell us because that seems to be the norm around this hospital. I said alright lets go to her room and see. Sure enough she was in there, and the nurse was cheking her out. I asked if she wanted us to leave until she was done, but she said we could stay. I asked her how it went and how she was doing, and she told me everything went smoothly and she is doing great. As soon as she woke up from the general anesthesia she was off the ventilator. The nurse practitioner came in to tell me that Dr. Wilson wanted her to reassure me that the surgery went perfect, it couldn't have gone any better. The neonatologist came in and told me she looked great, and had good bowel sounds, which meant they could start her feeding within a couple of hours. They had originally predicted she wouldn't be able to eat until the next morning, so this was great news. He ordered some morphine for her pain. You could tell she was pretty uncomfortable she was wiggling and fussing, as soon as the nurse gave it to her she immediately relaxed. Josh asked when she thought she might come home. She told us to look at it in terms of goals not dates. She has to go a whole week without a de-sat, be weaned off the oxygen, and drink a bottle at every feeding. The oxygen goal was pretty much met, but after the surgery they had her back up to 75% oxygen, because she couldn't keep her levels. I am hoping this is because of being sleepy from the anesthesia, I would hate to see her regress after all the progress she made. They also mentioned that she should meet her goals a little faster because she probably will start feeling better now that she won't have any fluid putting pressure on her brain. So all in all she seems to be on the right track to coming home. I have to add that the shunt didn't look as bad as I thought it would, but it is weird that you can actually see the tube that goes into her abdomen because her skin is so thin. Below is a picture of her, and I put arrows where you can see the tube:

Here is where the shunt went in

Lilah recovering ( :

Surgery Rescheduled

2010-04-26T15:20:00.001-07:00

Talk about a roller coaster ride. They have now decided that she does indeed need a shunt and scheduled her for surgery tomorrow morning. The past couple days she has been doing really good, taking her feeds well and keeping her oxygen levels. In fact today she was off actual oxygen, just had a little blow by air. They were planning on taking the nose canulas off tonight to see how she does. I am so excited to see my baby without those awful things in her nose. Her head size had increased slightly. I didn't notice too much in person, but when I looked over pictures I had taken today. I could definately see a difference. Kat and Kristin, who hadn't seen her in awhile noticed it too. You can see in the pictures below how bulged out her head is in the front.

This had been a cause of concern for me in the past couple of days, but nobody seemed to think she was in need of immediate surgery or anything. When I went to visit Saturday night, the nurse on call said they were going to give her a cat scan in the morning to check on things. The next day I happened to get there right when they were about to wheel her down for the scan, so I waited upstairs with Velle while she went down. She was back within 20 minutes, and the nurse told me they were going to give the results to the neurologist and take it from there. This morning, when I arrived with Kristin and Kat, they were in the middle of switching nurses, so it took awhile for someone to come in. I asked her if they knew the results of the cat scan, and she seemed confused for a second than said hold on I'll check on that. She came back about a half hour later and said the ventricles were larger, but no surgery is scheduled for this time. I drove back home, and I was there for about an hour, when one of the nurses who works with the neurosurgeons called me and said they decided she needed the surgery, and they had scheduled it for tomorrow morning at 10:30 am. She asked if I was going to be in tonight so I could sign papers. I told her I could come in first thing in the morning, but she said the anesthegiologist wants everything in order first thing, so I was able to do an over the phone consent. She then briefly explained the procedure, and told me she would see me in the morning. So that is the latest news I will update tomorrow after surgery. Good luck to my little Lilah!!

Surgery Cancelled

2010-04-23T20:49:00.000-07:00

Well I was so nervous the night before her surgery, that I barely got any sleep. I arranged for Kristin to take the kids all day so I could spend the whole day at the hospital with Lilah. Her surgery was scheduled for noon. I planned on being there for 10, so I could be with her for a couple hours before she had to go in. Her nurse said the neurosurgeons would be up to talk to me before she went in. They had started an IV to get her hydrated before surgery, and they had withheld food since 3 am. She was wide awake and fussy because she was so hungry. It's funny because this is the first time I really heard her cry. She seemed really pissed off! The neurosurgeon came in and says to me, we're here to see if Lilah is going to need her shunt surgery. I was wondering why he would say this, because I thought it was a definite thing. He felt her fontanelle (soft spot) for a brief couple seconds and says I think we can hold off, this is as normal a fontanelle as any I've ever felt. One of the ways they can tell if fluid is building up is by feeling the soft spot and the bones. I'm not exactly sure what they feel for, or how they tell but I guess they can. He went on to say how he compared the ultrasound from when I was pregnant with her to the cat scan they took the other day, and the ventricles were the same size, if not slightly smaller. He thought this was an indication that it might be slowly draining on its own. He also said that this didn't mean that she wouldn't eventually need a shunt, just not today. Any day, week, month that we can prolong the shunt will be better on her if she does end up needing surgery. She will be bigger and stronger, so the surgery won't be as dangerous for her. He told me the nurses would still be checking the daily head circumferences and if there is a change, they will reassess the situation and take it from there. I still have my doubts about this, and maybe he sensed that, because he said that he has been doing this for 32 years, and he knew a normal fontanelle when he felt one. Again, I hope to god they know what they're doing. After he left the neonatologist came in and apologized for all the ups and downs, and that I had come in all prepared and nothing happened. She also said they would talk to the other neurosurgeon to see if he felt the same way, not that she didn't trust this one, but just to make sure. This didn'r make me feel any better. They told her she can start her feeding back up, and if I wanted to I could feed her. I warmed up a bottle, and she sucked it right down. She was really hungry, the nurse couldn't believe how fast she drank it.

Another issue going on is that she has MRCA, which is basically a strain of staph infection that is resistant to broad spectrum antibiotics. It won't make her sick, it is just present in her body, so other people who have weakened immune systems, or are prone to catching MRSA, could catch it from her. The nurses and doctors have to take extra precautions, so they don't infect the other babies. Everytime they come in the room they have to put on a gown and gloves, and everytime they leave they have to take them off. They told me healthy adults rarely catch it, but told me I should wash my hands before I hold her and before I leave. I guess it's quite common in hospitals. I was worried at first, but at least it is nothing that will affect her. The last thing we need is some drug resistant infection to add into the mix.

Today I picked up Chevelle from Kristin's house. She slept over there last night. I had to go to Verizon to get a new phone, and met Josh over there. After that we took Chevelle out for Sushi, and went over to the hospital. It had been awhile since Chevelle had seen the baby, and she always complains that she never gets to spend time with Josh and I alone, so I thought this would be a nice treat for her. Whe we got there I went to walk in her room and it was empty. My heart jumped a little bit, but the nurse was right there and told me they moved her to another room. It has an extra little room before you walk in to hers. It's for extra protection because of the MRSA. I actually like this room better because it is more private. I asked the nurse how she was doing, and she said that her head circumference had gone up very little in the past couple days, compared to what it had gone up to before. She said the only thing she was concerned with was she was extremely sleepy all day and didn't seem to want to suck on her bottle. She was worried this might be a sign of fluid building up. They would check head circumference in the morning, and if there was a difference they would call in Dr. Aleen to see what he wanted to do. She than told me she was sure she would probaly need a shunt soon. I am so sick of the conflucting information. I am so frustrated with it. The visit ended great because I let Chevelle hold her. It was the first time she was allowed to, and you couldn't wipe the smile off her face! I know she is going to be an amazing sister, Lilah will be very lucky to have someone like her to be there and protect her. I hope she has a close relationship to her, like I have with my sisters. There is no other bond like it!

Surgey Scheduled

2010-04-21T16:01:00.000-07:00

They have decided to insert a VP shunt in Lilah' head. The EVD didn't work, and the fluid is not draining on it's own, so this is the next step. Backing up a little bit, Tuesday I was frustrated because I was supposed to go see the baby, and just as I was leaving, my Jeep woudn't start. One of the kids had left the light on and the battery died. No one was around to give me a jump and Josh wasn't expected home until around 10 that night. I have managed to make it to the hospital every day since she was born, and I was feeling like if I didn't see her, I was a bad mother somehow. Luckily Kristin got out of school early and drove me to the hospital at about 9 at night. Josh who was crackfilling, met me over there. I had mentioned in a previous blog how they had started bottle feeding, which didn't go to well, but when I arrived they asked me if I wanted to feed her a bottle, and she drank half of it. The OT (occupational therapist) had been working with her and she had been feeding really well, taking whole and half bottles. So all in all the night ended fabulously because I got to feed her a bottle for the first time!

The next day I had plans to meet Randy and his mother Corina (Josh's aunt)over at the hospital so Corina could see Lilah. I was also hoping on hearing some news about the plan of action for Lilah's hydrocephalus. The nurse said that they were planning on giving her a cat scan the following day, and that they would probably get her on the schedule for surgery. I asked if Allen had been in, and she said she would check for me. She talked to the neonatologist who came in and told me that she had seen Allen but they hadn't dicussed Lilah (rolls eyes), so she said she would give him a buzz at home. She came in a few moments later and pretty much told me the same thing the nurse did, about the planned cat scan and all. I was able to feed her another bottle, and then I went to dinner with Randy, Ryan, Corina, and Des at Silly's. I had my first taste of fried pickles yum yum!

So today it was a beautiful day out and I took the kids to Deering Oaks Park. Afterwards I dropped them all off at Kat's house, and headed over to Maine Med. When I arrived I could definately tell that her head looked larger. Also she looked very pale and sickly to me and was very fussy. I was really worried at this point, because I'm thinking to myself how can they let her sit here with this fluid bulding up and not do anything about it. A new nurse I had never seen before came in and said they had done the cat scan, but didn't know the results because Dr. Allen had to go over them. They would call me as soon as they knew anything. She said she had a fairly good day, but her oxygen levels were all over the place and she had a pretty significant de-sat the previous night. She then asked if I wanted to hold her, and while I was, the anesthegioloist (sp?) came in with a consent form for surgery tomorrow. He's like as you know she is having her shunt installed tomorrow, and I said umm no I didn't know this, and he said well she is on the schedule for 12:45, so he went over the risks and all that. It's general anesthesia and the risks are no different for a baby than an adult. He said they will have to insert a breathing tube and afterwards she might be a little sleepy and cranky. They will give her medicine for pain if she needs it. When the nurse came back in to put Lilah back I told her she was scheduled for surgery and she was surprised, she had no idea. I have to tell you Maine Med is amazing for the most part, but sometimes they seem a little disorganized and it can be frustrating at times. I am just so happy that they are going to do it tomorrow instead of waiting, I was so nervous about further brain damage. Josh kept telling me not to worry, that I had to trust that the docs know what they're doing, but you hear such bad horror stories all the time, that you have to wonder if they're making the right decisions. When I arrved home my phone rang and it was a neurosurgeon who was going to be assisting in her operation he explained the procedure, which he called "straight-forward", said it would only take about an hour. He said this is hopefully a permanent solution, but shunts are notorious for complicatons, and at her young age problems are inevitable, the biggest risk being infection. It is not a question of if it will fail or be infected, it is a question of when. For someone like me, with anxiety problems this is not a good thing. I can just see myself rushing her to the ER for every little fever, thinking it's infected. Or if she seems tired and listless, I know I will automatically think it is failing and the fluid is building up. I can also see myself taking daily head circumferences to see if there is any change in head size. I know many parents of children with hydro go through this, but a lot of them say that when something actually does happen you can tell how different it is from the little things that you spend your time worrying about. I will post tomorrow night after surgery. Wish her luck!

Busy, Busy

2010-04-19T07:29:00.000-07:00

Daddy finally getting to hold her! Happy Birthday Velle!!!

I survived Chevelle's birthday party without killing anyone, so that was good. It went really well, she had some friends show up, and all her cousins were here. Everyone had a blast. The night prior to her party, Josh's mom and sister-in-law came up and took all the kids to the Best Western for the night to go swimming, and to sleep in the hotel. Before they headed over there, I took them to to hospital to see Lilah, it was late so I was hoping to meet up with Dr. Allen to see what he had to say. The nurse she had came in and said she has been doing great with her oxygen, and had a really good night. They had attempted to bottle feed, but her oxygen leveles kept dipping low, and it seemed to stress her out. They wanted to make bottle feeding a positive experience, and not have her associate it with stress, so they stopped. It must of really tired her out because the next day she was really sleepy. She said if I hung around for a couple Allen should be in. He came by shortly after, and I asked him what the plan was. He said he did an ultrasound and the venrticles were bigger, also her head circumference had been slowly going up the past couple days (about a quarter centimeter each day). I asked him if he was planning on inserting another EVD (drain), and he said this time he wanted to wait it out and see what happens, sometimes the ventricles will become enlarged and than go back down. The fluid slowly builds up, so unless there is a dramatic change in the fluid, it won't cause any damage, and they will take action before that happens. I asked him if he was waiting to insert a shunt, and he said he didn't want to do that because he doesn't think it'll work. Her ventricles still have a lot of clotted blood in them due to the bleed, so he's afraid if he puts one in the blood will just clog it. Well I hope they know what they're doing, because I kind of dislike this wait and see attitude when it come to my child's brain. Other than that she is gaining weight, and doing really well.

After the party Saturday, Josh and I decided to go to the hospital while Kat stayed with the kids. Lately they have been letting us take her out and put her back ourselves, as long as she seems to be stable. I took her out when I got there, she had just been fed, so she was dead to the world. I rocked her for a little while, then Josh said he wanted to hold her. Since she has been born, he has sacrificed his time to hold her so I could get as much bonding time as possible. I am happy that she is well enough to be able to be passed around. I think he is as in love with her as I am. She was so comfortable that she actually had a major de-sat (drop in oxygen level) It went from 95 to 49, the nurse came in and picked her up and flicked her feet and rubbed her chest. She was trying to wake her up because she was sleeping so deeply. She said sometimes when they are held, they get too comfortable and forget to breathe. Sounds sweet but it was definately scary.

I went to the hospital yesterday by myself, and again she was doing great, and looked great, so I took her out and held her and rocked her, the nurse said her head circumference was up another half centimeter to 31.5, a week ago it was 30 and a quarter. I am anxious to go in today to see if Allen did another head ultrasound, and to see what the plan of action is, if any. I will keep you all updated as soon as I hear anything. I want to thank everyone again for their support!

3 weeks tomorrow!

2010-04-15T18:40:00.000-07:00

So Lilah will be 3 weeks tomorrow. She has done well and accomplished a lot in 3 weeks! I went to see her yesterday with my mom and Josh. It was time for her to eat, and they always changer her diaper and take her temp at the same time. I was there so I was able to do it. She was wide awake the whole time. I had never seen her this awake, it was a nice surprise. I held her for an hour or so, and I was just talking to her and she stared at me the whole time. Josh would talk to her from over my shoulder and she would immediately turn her head to him, than back to me when I spoke. I am soooo in love! I held her through her feeding, than rocked her to sleep. Unfortunately I had to put her back because I had to get home for Chevelle.

Today Kristin picked me up in the morning to see Lilah, and than to Wal-Mart to pick up some things for Velle's party. She was sleeping when we got there, and I didn't want to disturb her so I didn't ask to hold her. One of her nurses came in and said she had a wonderful night, and was doing great. She told me that she knew I was pumping breast milk, but wanted to know if I was planning on feeding her the milk through a bottle. I told her that was probably my plan, because I wouldn't be able to spend a lot of time at the hospital to breast feed. They wanted to know this because they plan on trying to bottle feed her. Lilah is showing all the signs that she is ready to eat, such as being wide awake when she is hungry and trying to suck on everything when she wants to eat. I was so stoked to hear this, it means she is one step closer to coming home. This was great news, but her head circumference went up a quarter of a centimeter, which probably means fluid is accumulating again. Dr. Allen is coming in tomorrow to do a head ultrasound, then he'll compare them to the one that was taken after the drain came out, and then take it from there. I haven't been able to talk to Allen because I haven't been there at the same time as him. The nurse seems to think he is waiting for her to gain weight, and be a little less dependent on the oxygen, then insert a shunt. Last time I talked to him he didn't seem to think she would need one, so I don't know if the nurse was mistaken, or if he changed his mind because the drain doesn't seem to be working. I think that the nurses automatically assume she is getting a shunt, because the majority of children with hydrocephalus have to have one. I am hoping ot speak with him soon to clear all this up.

We had a parent teacher conference for Chevelle, which went extremely well. Her teacher went on and on about how delightful she was and sweet and helpful. She said she was a teacher's dream. She said she noticed all the other kids looked up to her as a role model, and as someone who helps them out when they need it. She wrote in one of her journal entrys how she hated when school ends because she has to stop learning. The teacher thought this was so funny and she even showed it to her son as an example of being enthusiastic about school. Her son responded to it in disbelief saying "kids actually exist that like school" lol I am so proud of her! So overall a good day for my girls! I am getting ready for an eventful weekend with Chevelle's party, which my in-laws are coming up for. I am looking forward to seeing everyone, I just hope I don't go nuts trying to entertain all these 8 year old girls! I will post after the weekend to inform everyone how everything went.

The Drain is Back Out!

2010-04-13T16:10:00.001-07:00

Yesterday I went in to see Lilah, and when I arrived the physical therapist was there working with her. I thought how could they possibly wokr with a newborn, but she was just there to make sure her sucking reflexes were going ok, and looking at her muscle tone and such. She said she has a really good sucking reflex, and she holds her hands up by her face, and grabs at her face, which I guess they like to see in newborns. She said that preemies will tend to be a little far behind than full term babies, so she could still be slightly behind, and that doesn't necessarily mean it is because of brain damage. She said there would be no way to know for certain now, and even if there were certain parts that were possibly damaged, healthy parts of the brain can make up for the damaged parts. When she is discharged she will be set up with a physical therapist, and they will be able to track her progress and see if she needs help in certain areas. Some children with hydrocephalus have fairly large heads, so holding their heads up, sitting, crawling, can be very difficult. Lilah's head is a little misshapen but not at all large for her age. I am hoping she will be able to hit all her milestones, and I won't have to worry about any of this. She gave me a information packet that gave information on the difference between a preemie vs. a full-term baby. It had everything in it from preemie sleep patterns, to handling them, to positioning them. It seemed full of useful info, especially for when I take her home.

I noticed on the little message board in lilah's room, that there was a notecard from bella baby photography saying they had taken her picture, and gave me a link and password, if I wanted to order any. I was wondering about this, because I had signed a release when I was in the hospital for them to take her picture. I knew it was a little different in the NICU, but I wasn't sure quite how they went about taking the pics. I guess they go in there weekly and take pics of the babies to journal their growth and progress, then if you want you can order the pics. I ended up ordering one even though they were ridiculously expensive. It was in black and white and she looked so beautiful, I couldn't help myself lol I am just hoping that they will take another one when the drain and oxygen canulas are out.

I knew that the plan was to take out the drain today, so I waited until about noon then headed over there. I was dissapointed when I arrived and the drain was still in. I had to leave by three because Josh had an appointment, and I had no way to get to the hospital the rest of the day. I was sad that I wouldn't get to hold her. I was there for about an hour and the neonatologist told me he was going to take it out, I didn't know that they could, I just automatically assumed the neurologist had to do it, but I guess I was wrong. He told me I could leave if I didn't want to see, but I stayed in the room, although I definately didn't want to watch. Josh of course did, he is so strange sometimes ( :
The whole thing lasted about 5 minutes, the hardest part was getting all the tape off of her full head of hair, and this was the only part she cried through, she is such a trouper ( : I guess it's pretty much like pulling out a catheter or IV. I assumed it went in a lot farther than it actually does. The nurse told me they were going to do a quick ultrasound and take some pics so the neurologist (not Dr. Allen, he is on vaca still) could review them. She didn't comment on what she was seeing, and when she was done she said she would pass the pictures to the neurologist on call. Dr. Allen won't be back until thursday, and I guess he is the only one who can put the drain back in, so hopefully she doesn't need it by then. The nurse was happy that they could finally move her head around, because she felt her neck and could tell the muscle was stiff rom being in one position, poor thing! I was able to change her diaper, and I asked Josh if he wanted to do it, he was like no way, but when I started changing her, he came over and helped me. It was a real sweet gesture. Finally the best part about the trip, I got to hold her again! It had been a week and a day since the last time, so basically it felt like forever. I feel bad because every time I hold her they have to spike up her oxygen, but I guess this is normal.

I am planning on heading over to the hospital tomorrow with Josh and my mother. It has been two weeks since she was able to see her, because she came down with a cold and didn't want to risk being around her. Josh hasn't been able to see her as often as I have because he is trying to start his own business, plus working another job at night to make ends meet. He literally is working from 6 in the morning until midnight. He is amazing, I wish I could be more like him. When I am feeling down I have to remind myself that Josh not only has to worry about the baby, like me, but also has to worry about financially supporting the family, and being able to pay our mortgage. He handles all this with a positive additude, and a smile on his face, so I have been trying to do the same. It is hard sometimes, I hate when I start to feel sorry for myself, that is something I promised I would never do, so I just have to snap myself out of it and move on. Believe me I am trying my best!

Weekend Update

2010-04-10T18:43:00.000-07:00

Lilah turned 2 weeks on Friday, and I have to say I am extremely happy that I have managed to make it to the hospital everyday since she was born. Sometimes multiple times a day. I also have to give thanks to my friends and family who have helped me out with rides, childcare, etc. I don't know what I would do without everyones support.

Josh had to go down to Mass for work. He was planning on being back for 7 to take Chevelle to a father daughter dance at her school. I had to go to wal-mart to pick out a dress for her, and Randy (Josh's cousin, and one of my closest friends) offered to take me. He took me out for breakfast first, which was nice. I rarely get to do things without the kids, so even going out for a couple hours and having adult conversation was a treat. After Wal-Mart we swung by the hospital to check on Lilah, because I wasn't sure if I would get a chance to see her today. They had her on her back today, because the nurse said when Lilah is awake she tries to look around, and she felt bad that Lilah had nothing to look at on her stomach haha (how sweet) She didn't have much new news to report. She is doing the same, really no change. She did gain weight, which I was ecstatic to hear, she is up from 4 pounds 2 ounces three days ago, to 4 pounds 5 ounces today. It doesn't seem like much, but in a preemie that is a good weight gain. That is one step closer to getting her home. The plan is to take the drain out tuesday and if need be, put it back in Friday. Hopefully it stays out for good. I will make sure I get over there to hold her everyday between just in case. Since this post is on the short side, I thought I would share a poem. It was written by the NICU staff nurse, and was published in the back of the" Parents Guide to the NICU" booklet they give you when your child is admitted there. It's so sweet ( :

Abiding Time

Underneath all the alarms and blinking lights,
Under the plastic domes and quilted sheets,
A tiny life is stirring, yet unnoticed;
A smile, a tear, a steady rythmic beat.
Under the tubes, the tapes, the wires, there's a life.
A face, and eyes so small begin to blink.
I take time to study the expressions
and wonder what on earth you might think.
Although I may not hold you at this moment,
with every breath I know you will be stronger.
I must learn to wait for you, my child.
I know the day will come I'll wait no longer.
Who's to say whose life will be made the richer?
And once you're in my arms, I'll hold you fast.
For I'm the richest queen in all the court,
And you, my little treasure, are mine at last!

See isn't it sweet? ( :

My velly is 8!

2010-04-07T17:07:00.001-07:00

Chevelle turned 8 yesterday. I can't believe how fast time flies. I have been thinking I need to slow down and try to remember them this little, because before you know it they will be all grown up ) :
My friend Kristie came up from Mass, with her boyfriend and his sister. Even though we have a party planned for Chevelle on the 17th, we decided to take her to Chuck E. Cheese to celebrate. Kat came with Jack, and Randy, Ryan, and Josh headed over there after work. The plan was to let the kids play for awhile, then Kat would take all the kids home, and Josh and I would head over to the hospital with Kristie and crew to see Lilah. Earlier in the day we called over there to see if the drain had been reinserted, it had which wasn't a big surprise, so I knew we would be seeing her all hooked up when we arrived. As usual she was sleeping peacefully on her tummy, the position she seems to prefer. Her nurse Leslie came in, and said there wasn't much difference in the fluid from day 1 of being off the drain until yesterday, but it was there, and Allen wanted to put it in just to be safe. He is going to be on vacation this week, so he wanted to do it before he left. There is another neurologist on call, but he thought it best that he do the procedure himself. She also informed me that he anticipated that she would only need it for a couple days or so, but again since he is going to be on vacation he is just going to keep it in until he returns. It can't hurt to keep it in longer than they anticipate she needs it. Her oxygen sats had improved too, so that was nice to hear. A new nurse that I hadn't met before was taking care of her, and she was so sweet. She kept telling me that she thought Lilah was just about the sweetest thing she ever saw. That made this Mommy proud ( :

Josh was working today all day, so Kristin picked me up in the morning to go see her, when we arrived they were just starting morning rounds. I like being present during these, because you can hear some info that maybe the nurse forgot to inform you about, although I have to say half the things that come out of their mouths are medical terms I don't quite understand. I am starting to catch on to what they are talking about. I think that is the first indication you spend way too much time in a hospital. This time I didn't hear anything new, except for the fact that her drain had put out a lot more fluid since last night, and that they had to re-insert her IV fluids, because they have to replace the fluids they are taking out. Leslie also told the neonatologist that she was doing well , and this morning she was awake and alert for a long time. I was happy to hear this because it seems everytime I come in she is sleeping. I was worried about that. I don't remember my other cildren sleeping that much, but I guess if someone had to go through all the poking and prodding she does on a daily basis, they would want to sleep too.

I was visiting for about a half an hour, when the social worker came in. I had met her the night before my c-section, she had come in to see if she could help me with anything. They have these homes called Ronald Mcdonald houses, they are for parents who have children in the hospital, and need a place to stay close by. I had told her when I had previously spoken to her that we wouldn't need them because we lived close by. Today when she came in she informed me that even though I didn't need to sleep there, that if we had the children during the day, and wanted to visit Lilah without them one of us could take them to the Mcdonald house. They have an indoor and outdoor play area, and free meals all day. It was nice to know this was an option. She also told me she wanted to mention that because Lilah had a brain issue, and could have problems in the future, that we should consider applying for SSI. They would probably deny her, because there is no way to know right now if there is damage, but if we kept on appealing until there was a confirmation from a doctor saying she indeed had problems, then we would get retroactive from the day we filed. For example, if we applied now, if in 3 years they learn she has learning dissabilities, and was eligible we would get 3 years worth of benefits. I told her I would take down the number, but I have apprehensions about calling, becaus I feel I should be hoping for the best not preparing for the worst, and even if she has a dissablility, unless it is severe, I want her to think she can do anything she puts her mind to. Saying to her, here is some money because you are disabled, seems like I might limit her potential for great things. That probably sounds stupid, but it's how I feel at the moment.

Every day I feel like my time with Lilah is too short, but I know she is being well cared for, and my kids at home need me. Even so, as soon as I leave the hospital all I think about is how I can't wait until I see her again. I feel like I am leaving a piece of my heart behind, every time I walk out the door. I can not wait until I can take her home, I don't think I will be able to put her down. I have to make it up to her, the lack of contact. I wan't her to feel completely and utterly surrounded with love. I am hoping this is the last draining and we can focus on her gaining weight and eating so she can be home with us. It's funny that you can feel such a void and emptiness in your home for someone that has never lived there (besides in my belly lol). I am praying she will be home soon and all this will just seem like a bad dream! I will post soon with updates.

Lilah had to miss her first holiday ) :

2010-04-05T16:21:00.000-07:00

Josh's parents came up for Easter, and to see Lilah. My sister Kristin came with the girls, and my mom was here. We did an easter egg hunt with all the kids and the weather was beautiful!! 75 degrees, which in Maine in the early month of April is pretty rare. I was upset that Lilah wasn't here, but I just told myself that if she was healthy she wouldn't have been born until May therefore she wouldn't have been here anyways. I bought her a stuffed bunny to bring into the hospital for her, so I could feel like she had a little part of our Easter. When we arrived at the hospital, there was a little easter card taped to her Isolette. It was a little poem from "Lilah". It was extremely sweet and made me cry. Josh's dad said he couldn't believe how small she was. His mom said she resembled Chevelle. They stayed for a little while before heading home. I didn't ask if I could hold her this time because she looked so peaceful, I didn't want to disturb her. The nurse said she was doing well, and Josh and I stayed for an hour or so before heading back home.

This morning we decided to go in and see her because Dr. Allen said if he was going to need to put another drain in he would know by today. We walked in and no drain, but the nurse came in shortly after and told us that Allen makes his rounds later in the evening so they wouldn't know until then. I was dissapointed because I couldn't make it to the hospital later that day, Josh was working, but they told us they would call us, or we could call them. The nurse asked if I wanted to hold her because if she has the drain re-inserted I wouldn't be able to hold her again for a week. As I was holding her I noticed her oxygen levels were dropping, and the nurse came in to turn it up a little. She told us that moving her could have been the problem, for some reason her body responds better to being on her belly. As I was holding her the Nurse Practitioner came in and told me that since last night she had a couple de-sats, and congestion in her chest which could mean a possible issue with her heart. The neo doc ordered an ultrasound and they didn't find anything signifigant. They did find a heart murmur, but they said that was fairly common in babies, and it most likely will go away on it's own. They also said that when a baby is in utero the chambers of their hearts are open, and shortly after birth they close up, well Lilah's haven't closed yet so they are keeping an eye on that. I truly hope this is nothing, the last thing we need is heart problems to add to the list. Another nurse informed us that these oxygen sat problems could be the first sign that she might need the drain back in. I want her to get better without the use of a shunt, but it's extremely frustrating knowing that means another week without holding her, another week of her in the hospital. Even if these issues were resolved she still has to gain weight, feed and breathe on her own. She actually has lost weight since birth, going from 4 pounds 3 ounces, down to 3 pounds 13 ounces. They started mixing a high calorie fortified formula in with the breast milk to give her extra calories. I hope this works!

At this point I feel she may never get to come home. I have a fear that she won't know who I am, and that she will suffer in the long run from not having that contact with me. I have been having bad dreams lately, that the doctors tell me she is brain dead and that she isn't going to live. They are horrible and I wake up feeling so depressed. The other night I was thinking back to just a few months ago, when I told Josh I was going to put her in dance, because we never had the money before to enroll Chevelle. I then started thinking ahead to the future in that she may never walk let alone dance. I was reminded of the horrible past, years ago, when I found out Brittany had fallen into the pool, and I recall how the whole ride to the hospital I was crying out loud to my mother, I don't care if she is a vegetable on a ventilator for the rest of her life just please let her be alive. My mother reminded me of this the other day when I was crying over the fact the Lilah may never lead a "normal" life. I told her I only said that because I wasn't in my right mind. I am positive my perspective would have changed if she was left in that state. I even have a living will stating I wouldn't want to be kept alive on machines, so if I would not want it for myself, I certainly wouldn't for my child. I think the point she was trying to convey was that Lilah is alive, and breathing and seemingly ok for the moment, and that I had already been through the worst thing a mother could go through. I was able to get throught that, therefore I could get through this and any problems in the future. After all I have been through, it is hard not thinking about something happening to her, and how the hell I would survive something like that again, and could life possibly be so shitty to me, that it would deal me another hand like that. I am so glad I am able to move around a lot more, because I can start to occupy my time with housework, errands, and chores, instead of sitting here thinking dark thoughts and wallowing in self-pity. Well I am off to bed and I will post tomorrow after I know if she is back on the drain.

More good news...

2010-04-04T03:50:00.000-07:00

FINALLY........

Things have been going great lately with Lilah. I went in Thursday and the nurse informed me they decided to keep the drain in an extra day just to be safe. I wasn't really dissapointed because I would rather they do that, than have it not work because they decide to take it out too early. Her nurse happened to be the fiance of one of Josh's customers, and she was extremely nice. She allowed me to take her tempature and change her diaper! I never knew I could get so excited about changing a diaper, but for me it was like Christmas morning, getting to do something as simple as that. They were able to lower her oxygen, so that was another bit of good news.

Friday came, which happened to be Good Friday, not that I am religous, but I had to admit if I was going to recieve good news, this day seemed highly appropriate. I was going to meet Randy and Ryan over at the hospital around 5, but Kristin was over and had nothing to do, so around 1 she asked if I wanted to take a ride out there to see if they took the drain out. I really didn't want to wait until 5, so we hopped in the car and rode over there. I walked into her room in the NICU, and there she was, drain-free! She had a little tiny band-aid on her head, it was too cute. The nurse immediately asked if I wanted to hold her, and I said ummmm yeah duh! She said we could do skin on skin contact because it keeps the baby warmer, and allows for bonding, so they let me hold her without being wrapped in a blanket. It was the most amazing feeling in the world. I wanted to remember every second of it, so I could replay it in my head when I am feeling down. The time I got to hold her completely washed away all the sadness and heartache I felt over the last week, and replaced it with joy. I don't think I will ever appreciate a moment more than I did this. She was awake most of the time too, just staring up at me. I was supposed to go home, than come back, but I didn't want to put her down, so I just stayed until Randy and Ryan came. Dr. Allen happened to show up while we were there and told me that the re-scanned her head and her brain had expanded out, and filled the space where all the fluid had been. He said it was just what they wanted to see. He also informed us that there was a little bit of blood left over in the ventricles, so he probably will have to drain one more week, until they are flushed out and can continue to drain on there own. He said as she grows the ventricles will grow with her, so it should completely avoid the problem of fluid build-up again. I don't mind if they have to drain it 3 more times, in the long run it will save numerous trips to the hospital for shunt problems (for which there are many). The only thing that stinks about that, is she can't be held when she is "draining". I told him that I would just make sure I held her as much as possible in between.

I went back Saturday, with the kids. They wanted a chance to get to see her out of the Isolette (incubator), and when I arrived, they had just given her a bath, and she was actually dressed in a cute little onesie with hearts on it. She is almost completely tube-free, they took out the nutrition line in her belly, because now she is getting enough from my milk. They also removed the IV fluid, they only needed it to replace all the fluid she was losing out of her head. She is almost completely weaned of of the oxygen, and the only other tube she had was her G-tube (feeding tube) which they had removed from her nose, and inserted down her throat ( I have no idea why they did that, I'll have to ask). I was able to hold her for an hour, and they let me change her diaper again. The kids were getting restless and bored, so we headed home to cook supper.

Today is Easter, and my in-laws are coming up from Mass to eat dinner, and go visit Lilah. I am sad that she won't be home for her first holiday, but I got her a big pink bunny to bring to her hospital room. My family and Josh's parents will be here, so I count my blessings that I have the rest of my family here, happy and healthy, and I know Lilah will have many holidays to celebrate with us. I am looking forward to having an easter egg hunt with my kids and nieces. I will post pictures soon. Happy Easter!!!!!

Some updates..

2010-03-30T16:40:00.000-07:00

Sleeping like a little princess <3

That funny thing on top of her head is her drain ) :

Things have been pretty hectic lately, but I want to make sure I try to keep up with all that's been going on with the baby and everything else. Lilah had her drain put in Friday, about 4 hours after her birth. I was able to go up and see her the next morning, and I was glad that the drain didn't look as awful as I had imagined it in my head. The fluid that comes out is a very odd color, it resembles iodine a little bit. I couldn't believe how much was in there, but our bodies constantly produce it, so it wasn't like all that was in her head at birth. I didn't think her head looked big when she was born, but I guess it had shrunk down 2 centimeters since birth. She looked a little better than I had remembered from the night before, and she was sleeping peacefully. The neonatologist told me the plan was to keep the drain in about a week, then see how the draining would go on it's own. Monday I was released from the hospital, and I have to say it was heart wrenching for me. I have given birth to three children, and they all have come home with me, so this was a very surreal, sad experience for me. My doctor offered to have me stay there an extra day, but I didn't think it would do anybody any good. My kids at home needed me, and missed me a lot, as I missed them. Before I left Monday Josh and I went up to the NICU to see how she was doing, she was awake the whole time and seemed very irritable. The nurse told us she wasn't sleeping very well, probably because she was in a little bit of pain. They don't like to keep them constantly doped up with pain killers, because then they come to rely on them. They like to have them deal with the pain, unless it seems they are extremely uncomfortable. They also started feeding her my breast milk which wasn't going over that well, she was putting out more than she was getting in. They had her at 6 cc's every 4 hours. She was peeing and pooping alright, but she was extremely gassy. The nurse pulled a tremendous amount of gas out of her belly. She also let me know that the digestive issue is a common problem in preemies, it is something they expect.

I spoke with the neonatologist, and they were running numerous tests on her to try to find the reason for the brain bleed. They were worried she might have a bleeding disorder, such as hemophilia, because her initial platelet levels were low. They re-tested and they came back normal, and all the tests they ran on her for clotting disorders and bleeding disorders came back normal. Like the doc said that is good news, but it doesn't give us any answers as to why she has this. He told me it's most likely one of those things that happens and we'll never know why.

When we arrived home I was a little on the weepy side, but I did ok. I feel so bad that I can't hold her, I mean it is such an odd feeling to have a child that is already 5 days old and you have never held her. At this point I would give anything for that. It is so funny the things you take for granted.

Today was a really good day. My mom Josh and I went to the hospital to see Lilah, and the nurse came in and told me she had a wonderful night. She seemed to be sleeping a lot more comfortably, and she wasn't nearly as fussy. She is still on a saturation of 40 % oxygen, and she seems to like it at that, because everytime they lower it her sats go down to the 80's. She also told me that she has kept my milk down, and was up to 15 cc's. She told me that Dr. Allen had been in every night around 5 to check in on how the draining was going, and he was impressed with everything. He happened to show up when I was there, and he told me that he was going to take the drain out Thursday, and he would do a quick ultrasound of her head, and take things from there. He said he would know by Monday if the fluid wasn't going to continue draining, and then he would have to re-insert it, and most likely continue doing that until she is strong enough to recieve a shunt. The best news of all was that if they take it out, I will finally get to hold her. I know once I am able to do that it will give me the strength to get through the next couple weeks. I am taking these bits of good info as little miracles. I know she is a fighter, she comes from my family ( : So I am proceeding with cautious optimism, I don't want to get my hopes up too high, but things have definately started looking up.

Lilah's Here!!!

2010-03-27T11:46:00.000-07:00

As you all know I was scheduled for my C-Section for 7:30 yesterday morning. They were right on time, thank god for small favors. I was so scared I didn't sleep the whole night. Speaking with the anestegiologist that morning put some of my worries to rest, although she said there is a slight chance we place the spinal too high and you might have trouble breathing. Now with my anxiety problems, when someone tells me I might have trouble breathing I swear my mind will trick me into thinking I can't breathe. Well they wheeled me in and placed the spinal, which was not nearly as bad as I thought it was going to be, and I was instantly numb. They laid me back and put the curtain up. The doctor was amazing, he was cracking jokes the whole time telling me how I was the perfect patient, and how I didn't seem scared and how good I was doing. What most people don't know is when I appear to be calm it means that I am REALLY scared shitless. He calls Josh in, so I thought he was about to get started, what I didn't realize was that he had already started, and it was literally like 3 minutes after they called Josh in that she was out. Josh of course was facinated by all of this, he definately isn't squeemish, he actually thinks it's "cool". She came out pretty purple so I was worried for a couple minutes, and I didn't hear her cry at all, but then she pinked right up and started crying. It wasn't the strongest cry, but it was there nonetheless. I really had a weird calmness about me. It was very surreal. I think I was almost in shock. The funny thing is I had all these horrible thoughts of what she might look like, but when she came out to me she was perfect (although all moms say this I'm sure) She was born at 7:58 and weighed 4 pounds 3 ounces (more than I thought) and was 17 inches, she looked tiny, but I wasn't that shocked or anything by her size. I started to feel a little light headed and weird, but again my vitals looked good, so I think it was just a combination of lack of sleep, and all the craziness going on around me. I got to see her briefly before they brought her up to the NICU.

They wheeled me up to recovery and told me that when I started getting sensation back in my legs they would wheel me up on the bed to see her. I immeditaley started feeling sick as soon as the wheeled me into recovery, and I pretty much spent 8 hours throwing up anything I put into my mouth, even a sip of water. They brought me up to see her, and she ended up having to be on a ventilator, which isn't really a rare thing in a 33 week preemie. I visited with her for a couple minutes and they wheeled me back down. This is when my tempature started to drop and I developed hypothermia. They think it was a side effect of the spinal, it was weird because I wasn't cold, I was actually sweating.My temp was 93, so they had to stick me inside this "bear hug" thing that heats you up. I thought I was going to die I was so hot. I had no pain, but I guess the spinal works for up to 24 hours with pain management, and I definately felt it this morning. Unfortunately they can't really give me anything stronger than a motrin, because I am pumping my milk for her. I wasn't planning on breastfeeding initially, but it is the best thing for preemies to help with their weight gain, and immune systems.

Dr. Allen came in yesterday briefly after installing the drain, and informed us that the swelling was worse than they thought, and after taking some of the fluid out they found a tiny cyst, which could be evidence of a stroke. This doesn't necessariyl mean anything different, he still gave us the same odds of 50% cerebral palsy, but he also said the preemie brain sometimes has a way of "re-routing" itself and it would just be a wait and see thing. I know they don't like giving you any false hope, but it's also nice to know that everybody is different and nothing is set in stone. The doctor who delivered me said that he has seen traumatic brain injuries in babies that made miraculous recoveries, I know he isn't a neurologist, but it's nice to hear a positive word from a doctor.

They took my catheter out today so I was able to get around, and I felt alot better. I was able t0 eat something, and surprisingly I slept pretty well last night. I was starting to get a little bit weepy, I have stayed pretty strong so far, but I think everything was just starting to catch up to me, so Josh went up to the NICU to see how Lilah was doing, and she was off the ventillator, had her eyes open, and was looking all around. He took a picture of her for me and it made me feel alot better. He also arranged for them to keep a wheelchair outside my door so he can bring me up there when I want. I was feeling a lot stronger so he brought me up , and I got to hold her little hand and visit with her for a while. It was just what I needed to get me out of my funk. It is a weird feeling to see your child and not be able to hold them or comfort them, I feel like I might miss out on the bonding process lol It also made me miss Chevelle and Ethan horribly. I don't want them to feel neglected. They got the chance to see her yesterday, so I was real happy about that. They are already so in love with her, as we all are! Kristin and Kat came yesterday too, and Kristin was like she looks so normal, like she was expecting her to have two heads or something haha I am going to try to get some more rest, becasue kristie is bringing up my mom and her mother from Mass to visit. I am looking forward to seeing everyone, and we are continuing to take thing one day at a time, and focusing on all the positive things no matter how little they may seem.

Update from the Hospital

2010-03-25T11:41:00.000-07:00

Last pregnancy photo!

I am currently writing this from my laptop inside Maine Medical Prenatal Care Unit. I went to my planned ultrasound at Generations, and the hydro has progressed. They feel the risks of keeping her in there far outweigh the risks of taking her 7 weeks early. After sitting down with Dr. Pinette and Dr. Allen (neurologist) and going over the catscans and all the risks, I am very pleased with their decision and I believe it is the right one for Lilah. I also feel it gives her the best chance at a somewhat "normal" level of intelligence. As it is now Allen told me given the severity she has a 50% chance of Ceribral Palsy, and I'm sure that number would increase if they had decided to keep her in there. A bit of good news from them is they have decided to put off installing a shunt. They are going to go in through the soft spot in the top of her head and install an external drain, that will drain the fluid into a device on the side of her bed. If this method works we might avoid the whole shunt issue all together which would be fantastic seeing as once the shunt goes in she will always have to have it. Also shunts have a high failure rate, and a high infection rate, and I would hate to see her suffer these multiple invasive surgeries. As far as the prematurity issue goes, I am 33 weeks, and she weighs 4 pounds, so chances are this isn't going to be a huge problem.
I was able to take a tour of the NICU, which will be her home for at least a couple of weeks. It wasn't as scary as I aniticipated, and all the rooms are private, so it gives you a quiet place to bond with the baby. I spoke with the Neonatologist, and he explained that she might have to go on a ventilator if she was having breathing issues, or it may just be as simple as having a little oxygen. They have admitted me a couple days early than my scheduled C-section, and have been giving me steroid injection to mature her lungs. All the staff here have been wonderful, and have been able to answer all my question to my satisfaction.
I am scheduled to go in tomorrow at 7:30 am, and I have to say my anxiety is starting to kick in. I literally only had a day to process this and take it all in. I go in for an appointment and the next thing you know they're admitting me. I thought I at least had a couple more weeks to mentally prepare myself, although I don't know if anybody is really mentally prepared for this. I watched a couple videos on C-sections provided by the nurses, and the doc who is going to be delivering her came down and explained the procedure. I am not that scared about the procedure itself, I am a little nervous about the healing process afterwards, I honestly don't have the highest tolerance for pain. It's hard not to think about the risks of something happening when you have a husband and small children, I know it's a simple surgery, but that's always in the back of your mind, especially with my luck lol My sister Kat was able to bring in the kids to see me today. I figured it would be better to see me and know I'm fine instead of bringing them in when I'm hooked up to IVs and having trouble getting out of bed. Ethan tends to jump on me alot, so I know that wouldn't be a pleasant thing. I explained to them that she was going to be in here for awhile, taht we wouldn't be immeadiately taking her home, Chevelle seemed a little upset by this, but I told her the NICU allowed siblings to visit the baby as long as they were vaccinated and cold-free. I also told her I would be out in at least 3 days, and I would bring her here after school everyday if she wanted to.
When I was first admitted they asked me if I had a preferred religion, and I told them no. I mean I was baptized Catholic, and had my first communion and all that, but I haven't even been to church since I was 1o (unless you count the millions of funerals I've been to. So the said if I wanted I could speak with a spritual advisor, they don't really have a donomination, and they don't pressure you or anything, they just kind of come in and talk with you, so I said hey what can it hurt. She came in earlier and was really nice, she didn't try to talk to me about God or anything, and she just said she would head down to the chapel and say a prayer for me so I thought that was nice. If there is a God I guess I could use all the praying there is. They also sent in a reiki healer to perform a treatment. Reike is basically a Japanese technique for stress reduction and relaxation that also promotes healing, the healer lays his hands on you, and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. If your energy is low you are much more apt to feel stressed or sick, and when it is high we are more capable of being happy and healthy. They say it is capable of helping virtually every known ailment and malady and always creates a beneficial effect It may sound weird and all voodoo-e, but it actually made me feel really relaxed almost like being hypnotized, and you can feel the heat radiating off the healers hands, not normal heat either, it's quite hot. It also put me in much better spirits. Of course this could all be in my head, but what the hell if it makes me feel better and gives me hope, than what can it hurt, and I have always been one to say don't knock it until you try it. While we are on the topic of religion, I have to say this life force energy and the power of positive energy associated with healing sickness makes much more sense to me than the idea that there is a God up there just fucking around with everyones fate. He just points his finger and says you'll be normal and healthy and that innocent child there will die a painful death from leukemia. I know some religous people tell you that that's is not how it works, but I also know many that go on and on about god's will, and how it's meant to be and he doesn't give you more than you can handle. I think that is utter bullshit, because if that's the case that why would he make me suffer through the death of one child, the heart problems of another, and a baby on the way with a severe problem with her brain. I mean I can see one tragedy, but come on three. I must have done something pretty bad to deserve that it someones eyes. I still refuse to be broken, and I will always move on, and I will always deal, that is my way. It always has been and it always will be, so I say bring it on, I will tackle any problems that come my way with everything I have, and I will to my best to ensure my child has the best life possible regardless of the outcome. I thank you for listenting, and hopefully I will have my beautiful daughter come into this earth happy and as healthy as she can be. I will update first chance I get with lots of pics!!

Surprises

2010-03-23T19:07:00.000-07:00

Baby shower pics!

A little weekly update before I head to all my doctor appointments tomorrow. I was feeling pretty good this week emotionally. I have been taking everyones advice about thinking positively and trying to be in good spirits. Wednesday my sister Kat called and told me I had to leave my house, that she had a surprise for me. She works for a cleaning company, and they all came in and cleaned my house top to bottom. They did everything I hate doing, dusting, mopping, washing windows etc. It was such a nice surprise. I was glad to know that people cared enough to do something like that for me. One of the girls that cleaned my house is due the same day as me and I know how uncomfortable it is to be 7 months pregnant. She works every day, and took the time to clean my house, so I was extremely appreciative.
I was expecting my in-laws on Saturday, which I was excited for, because I love having people around. Kristin's friend Elisha came up with my mom to stay the weekend with her, and my friend Kristie came up with Kate. In hindsight I should have thought something was up because I've lived up here for 3 years and never have had that many people just happen to come up on the same weekend. My sister Kristin asked if I could take a ride with her to Wal-mart and when we came home there was a surprise baby shower waiting for me. I guess my sister had planned it for a couple months, which was no easy thing to do considering most of my friends and family live in Mass. I wasn't even planning on having a shower so it was nice, and I definately can use the gifts seeing as how we don't have much money at the moment. It's funny because we planned this baby because we were financially stable, and I was looking forward to buying all these cute things and decorating the nursery, and now I'm scared we're going to have to struggle to get just the essentials for her.
Kristie and Kate helped me set up the things I did get for the shower and put all the clothes away, and when it was all done I had an extreme sense of anxiety, because it made it all "real" for me. I'm thinking to myself wow she's going to be here in 7 weeks, and then I am going to have to deal with all the worries and unknowns and anxieties that are going to come with her birth. At least when she is in me I know she is safe, once she is out who knows, it's up in the air. I will post with an update tomorrow when I get back from the docs.

Two Months Left...

2010-03-16T15:11:00.000-07:00

Two months left to go!!!

I finally had my "normal" doctor appointment Friday.I go every two weeks until next month, then it's once a week. It was nice to go into a doctors office and not be a nervous wreck. Dr. Adams was so sweet about everything and told me she was sending all her positive energy and prayers my way. She is also in direct contact with Dr. Pinette from fetal-maternal medicine about everything that is going on. I recieved a call from Adams yesterday saying they were switching me to weekly ultrasounds to check growth and everything since Pinette will mostly focus on the brain. That means weekly ultrasounds from Pinettes and Adams, not that I mind looking at the baby, but it's difficult making arrangements with the kids and other appointments and everything. I also have to go and get my blood drawn once a week to check my RH antibodies, they can't go over 8 out of 32 (whatever the hell that means) right now they're at 1, so it's nothing to be concerned about at this point. Dr. Pinette called me and my next ultrasound with them is next Wednesday, and I was originally supposed to go down to Scarborough afterwards to meet with the neurologist, but they called me and informed me that he wants to come up and take a look at the ultrasound himself and meet with me there at Pinettes. I don't know why but that makes me uneasy for some reason. I guess I'm just being paranoid.
I had a nice weekend with the family. My sister Kristin's B-day was Sunday, so I took her out to eat, and then we came back here and ate a cheesecake I made for her. Randy and Ryan came over, I was happy to see them, it had been awhile. I like having a lot of people around me, it keeps my mind of things. My sister Kat and her boyfriend Chris moved out. I will definately miss having my nephew Jackson around, but I am happy that they are starting this new chapter in their lives. Josh has been super busy lately trying to get everything going with the business. Thank god it seems to be an early spring, because in his business you can't make money unless the weather is nice. It must be a lot of stress and pressure on him to do this, but he seems to be handling it pretty well. I am really proud of him, but also nervous how everything is going to go. I just have to have faith in him, he is full of ambition and if anyone can make it work, he can.

Back From the Docs

2010-03-11T11:59:00.000-08:00

I went in today for a follow-up ultrasound and to speak with the genetic counselers. I kind of feel like I left with more questions than answers. They said the amnio was normal, so I guess that is good news (I think), and they said that it hasn't gotten any worse, so I guess that is good news too. They did say that the MRI showed a brain bleed, and that it could of formed a clot that caused the ventricles to become blocked. They also said the ventricles were't formed correctly, they then went on to say that it might have been an antibody thing in my blood that wasn't compatible with Josh's blood that could of caused an abnormality. They sent me down to the lab to get blood drawn, then if something comes up they'll have Josh go in to check his blood. I guess the only purpose of this is if we plan to have more children, there could be a risk of this happening again. I have to get another ultrasound in two weeks, and meet with the neurologist, and they said he should have a better answer as to long term effects, and what to expect. He said it's a broad spectrum of outcomes. I then proceeded to draw a complete blank when asked if I had any questions. I am going to try to compose a list of things I want to ask, so that way when I go I won't forget anything important I think needs to be addressed. I got another picture of her profile, and she weighs 2 pounds 15 ounces, so she's growing good, she also is taking practice breaths, it was pretty cool to watch. Since I am still slightly confused, I don't feel any better or worse, I am kind of in the same position I was before I went in, and now another two weeks of this torturous waiting. I am just trying not to think about it and keep my mind occupied with other things. I have to just pretty much take this as a one day at a time thing, hope for the best, and focus on any good news I get, and hopefully that will ge tme through.

Still Waiting...

2010-03-10T06:16:00.000-08:00

God this week has gone by so slow. Tomorrow is the day I go in to the docs to see if I can get any more answers. On one hand I don't even want to go, because I finally have been coping with the news that I got. I don't want to recieve any more bad news, and then feel sad and helpless until my next appointment. On the other hand I am hoping for more information and a better understanding of what I might be dealing with. The doc did tell me that there is a rare chance that when I get another ultrasound it could be normal, well that is what I am hoping for. If I ended up developing antibodies in my RH negative blood, which only happens in 2% of pregnancies, or my child might have hydrocephalus which occurs in 1 out of every 1000 births, then maybe that rare chance of everything turning out alright might happen to me. It's funny how it's always the rare bad stuff that happens to me, none of the good stuff, like winning the lottery or something. If it wasn't for bad luck, I'd have no luck.
I think this baby wants to fight to be here, since I have had scares throughout my whole pregnancy, like the placenta previa, when the doctor told me my pregnancy was definately at risk, then the RH thing, now this. I feel like if all this has happened, and the baby is still alive and kicking then there is a reason for that. Josh has always said everything happens for a reason, and I've always thought that was bullshit, but now I have a feeling he could be right. I know I haven't always appreciated what I do have, and I have definately taken things for granted in the past. I honestly feel now that if I could just have happy and healthy kids, then that is all that matters. I will be satisfied with my life, and I'll never ask for anything else.
I keep going back and forth wondering if I will be able to handle all this. For some reason everybody around me thinks i'm this strong person, and I don't think that at all, I think they believe that because I don't show weakness or vulnerbility around anyone (Josh excluded). When I talk to people about this I make them think that everything will be ok, that I'm not scared shitless, when the truth is that I am. My family has a way of dealing with horrible things by cracking jokes and laughing about it, and I think that has definately helped me through some hard times, but it also has kept me from dealing with my true feelings. My sister and I even joked about having a handicapped child. "Well now we can park in the handicapped spots, like all the fat people at Wal-Mart, except you'll actually have a real reason to park there", or "maybe you can get a free wheelchair ramp ot of the deal". It may seem a little sick, but that's how we deal. I remember on the first year anniversary of my daughters death, who died from an accidental drowning. We were watering some plants we had planted and my cousin says "maybe we shouldn't be doing that, I mean honestly would you want water poured all over your grave if you had drowned" I looked at him kind of shocked for a minute, but then started cracking up. I swear even at funerals we're randomly laughing and making fun of things. Ok actually seeing this on paper, I think we're all sick and need some counseling ( :
Ok so I will be updating everything that has happened after I get home from the docs tomorrow, so here is my official prayer for a miracle, even if I'm not sure there is someone there to answer them. I guess it can't hurt.

Waiting....

2010-03-08T05:22:00.000-08:00

I'm still waiting for my results on everything, it's been a week and I haven't heard anything from anyone. Josh seems to think that when I go into my appt. Thursday they will go over eveything with me. Well they say sometimes that no news is good news, so in my head I'm thinking that if it was really bad they would call me, but then again there isn't anything they can do about it until she's born, so what would be the point.
We had a nice quiet weekend. I think Josh has felt obligated to hang around with me and keep my mind off things. He took me and the kids, and my niece Haylie to the Bounce Zone down in Saco, which basically is a giant sports complex thing. They had a blast. I haven't mentioned anything to them about the baby yet until I find out more information. I don't want Chevelle to worry or get upset, she is very sensitive.
I have been feeling a little better about everything lately, I feel like when it comes down to it I'll be able to handle whatever comes my way. The first couple of days I think I drove Google nuts with my constant searching of anything I could find on hydrocephalus. I have to say Google beacame my worst enemy, because nothing I found seemed too encouraging or hopeful. I eventually came across different support groups, some which had links to families blogs whose children were born with hydrocephalus. This made me feel a little better because some of them had pretty good outcomes, others not so good, but it gives me hope.
I have to say when I first heard the news, all I could picture was taking care of someone in a wheelchair for the rest of my life, and I have to admit I had some selfish thoughts, like Josh is going to be mad because we're supposed to travel the world when the kids are grown, how are we supposed to do that now? I know it seems horrible and silly, but I wasn't thinking straight. After I had time to reflect and think about it my thoughts turned into just not wanting my child to suffer or be in pain. I want them to have a happy life with no limitations, and god knows life is hard enough when you're able-bodied, never mind having physical and mental limitations. I also thought about Chevelle and Ethan, and my fear that they will feel neglected if I have to spend a lot of time in hospitals and a lot of time caring for Lilah. I also cried for Chevelle because she was so excited to have this sister. Brittany passed away before she was born, and all she would talk about was how bad she wanted a sister that she could know and play with. I'm worried that she will never get to play with her like she wanted to. Josh says what is the difference she's still going to have a sister? He always knows what to say to make me feel better.

MRI

2010-03-06T18:20:00.000-08:00

Tuesday I had my MRI, which was at 1:30. I was told not to eat or drink anything for four hours before, so I was pretty hungry by the time I got there. They apparently had a MRI scheduled before mine that took a lot longer than they thought so I had to wait. Waiting kills me because I was nervous to begin with and now I had to sit there and have my anxiety build up before I went in. All I could imagine was being in that coffin-like thing for an hour. They finally took me in around 2:15 to do a screening which basically consists of them asking me a million questions. The radiologist informed me that as long as the babay wasn't moving around too much it should only take 20 minutes. This put my mind at ease a bit. They put me in my hospital gown and brought me in.
I've had a MRI in the past for migraines, but it was an open MRI, because of my claustrophobia. I was shocked at the difference in size. She told me I'd only be going in up to my head because all they needed to scan was my belly. I laid down with some earplugs and prayed I wouldn't pass out from the anxiety. I kind of freaked out at first, but after the first minute I calmed down and relaxed and it wasn't nearly as bad as I imagined it was going to be. I get up and get dressed and they said ok have a nice day. I guess I expcted a little more, like we'll call you with the results or something. So I guess it's just back home to play the waiting game.

Amnio

2010-03-06T11:59:00.000-08:00

They set me up for the amnio last Monday, followed by the Fetal MRI Tuesday. To be honest I was more nervous about the MRI than the amnio, because I am so claustrophobic.
They diagnosed me on Thursday, and I had all this testing the beginning of the week. The weekend in between was pretty bad for me. I cried for two days straight (not in front of anyone mind you), and I didn't sleep for two days either. Thank god for Josh though, because he kept reassuring me that everything would be ok, and to think positive. I have to say his constant optimism and "glass half full" attiutude has annoyed me in the past but it really came in handy when I needed it.
Monday I had to be at Maine Med for 9, and again thank god for Josh because I was completely lost in that massive hospital I probably would of been late had he not been there. They finally called me in a half hour later and I was instantly nervous because there seemed like alot of people in the room just to stick a damn needle in me. They said it would only take up to a minute and it wasn't painful so relax (yeah right). Well they were right it didn't hurt, just kind of a weird pressure feeling, and they took out three syringes of fluid, and she shows it to me and says "wanna see your baby's pee?" So that was over and done with, now they just had to moniter me to make sure I didn't go into labor.
I was put in a room on a monitor and what do you know I'm having contractions (nothing can ever go smoothly), so they make me drink a lot of water, and go to the bathroom to see if that helped. It didn't so they had to give me medicine to stop them, which caused my heart to beat rapidly, and I was shaking uncontrollably. I finally got to go home after three hours. Ok all in all not that bad of an experience, except for the fact I have to wait 10-14 days for results. I also got a call on the way home from Dr. Pinette's (Fetal-Medicine) office, stating they set me up for an appt. Thursday the 11th for a follow-up ultrasound and meeting with the genetic counselers.

The Diagnosis

2010-03-06T08:20:00.000-08:00

So I've never blogged before, but figured it might be a good way to keep family and friends informed on what's going on with the baby. I also thought it might be a way to keep me from going insane over these next couple of months while we're awaiting her birth. I apologize in advance for my less than stellar writing and spelling skills.....

I laugh now thinking back to New Years Eve, when Josh and I were reminiscing about the past ten years (We got together in Jan 2000). We were saying how many ups and downs, and heartaches, and joys we've had, and how we've managed to stick together and have a marriage and friendship that most people dream about. I then said that this decade was going to be amazing and even better than the last. Well four days later he lost his job of ten years, and we had no savings, a 1700 dollar a month mortgage and found myself 5 months pregnant with no health insurance. Josh said no big deal I'll start my own business, which he's been wanting to do for the longest time, he just was afraid to due to the fact that it was a big risk with owning a home, and having 3 kids and one on the way. I finally felt better, and things were starting to look up again, I couldn't wait for the baby to come, and we were so ecstatic that it was a girl (it's what everyone wanted).
I got a call from my doctor saying there was a problem with my bloodwork. I am RH negative, which normally doesn't cause a problem unless you're pregnant. They give you a shot of rho-gam during pregnancy, which is supposed to stop your body from producing antibodies against the baby, apparently mine didn't work (surprise surprise) and I had developed the antibodies. Apparently this only happens in 2% of pregnancies (lucky me), but does not usually pose a problem with this pregnancy (the biggest risk is anemia), but could pose a problem with future pregnancies. I didn't see this as a big deal anyways because we weren't planning on having anymore anyways. They set me up an appointment to talk to the fetal medicine doctor about it and that was that.

Last Thursday I went there thinking ok no big deal this should be a simple appointment. They gave me a routine ultrasound while I was there and thinking back nothing sticks out about it that would make me think something was wrong. She finished up and said ok the doc will be in to talk to you, I figured about the RH thing. It did seem to take them forever to come back in, which I did think was unusual because it was 5:00 and I figured they can't be that busy. Josh and I were laughing and making jokes as we always do, when he came in and sat down and said well I'll explain the RH thing in a moment because it's fairly simple, but we have something else going on that's not so simple. He then went on to explain that there was fluid backed up around the brain and that it's something called hydrocephalus. He said there was a 99% chance she would need a shunt when she was born to drain the fluid and thet he couldn't tell us what the outcome was because every case was different and it all depended on what the cause was too. He told us he didn't think it was something genetic (all my ultrasounds up until that point were normal), he said it could of been caused by an infection or aqueductal stenosis (I'll explain all this medical stuff in a later post) He set me up an aminio to rule out abnormalities, and a fetal MRI I guess to get a better picture of the baby's brain and see if they can see anything distinct that could be causeing the blockage.