The Holidays Are Here!

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!

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.

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!

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

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

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

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..

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...

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.

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!!

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

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!

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!

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!