Shunt Failure

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...

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

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...

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!