Saturday, November 25, 2006

Little Lion

Bub

I can hardly believe that Avery will be 10 months old soon! She is getting more and more grown up and more and more fun all the time! She's amazing! She now has 2 teeth, and is very proud of them. She likes to bite her gums together so that she can feel those two bottom teeth against her top gums!
She was also sick for the first time last week. She had what turned out to be roseola. I was worried about her at first though because she had the fever, diarhea, lethargy and irritability, all of which I have read can be signs of shunt failure. So we took her to her neurosurgeon just in case, and he made her very upset by pushing down really hard on her shunt which woke her up, and then he made her even more upset by having a nurse pin her down while he stuck a needle in the shunt valve to test her intercranial pressure. Poor baby. I felt so bad for her. She cried and cried. It made me want to cry too!!! Oh dear. Luckily there was nothing wrong with her shunt, but I would rather be safe than sorry. So a day or so after that the fever went away, and then after that she got the rash and we realised what it was. So then I felt better. And once the rash appeared she didn't seem to be too bothered by it, so we all felt a lot better!!
Today was the first time that we left Avery with someone else for an extended period during the day. I was a little worried because although she hasn't had a problem with stranger anxiety, I would have hated for Annie to have to deal with that if she developed it. But it appears that she is still happy with people she doesn't know very well as long as they smile and are nice! Annie arrived before I put Avery down for her morning nap, so she saw her a little bit while I was still here. Annie said that when she went up to get her after her nap, she looked at her a little bit as if to say "hang on...you're not my mother" but then decided that since she was smiling at her, she didn't mind too much who she was and she started smiling back! So that's nice to know. Annie said she was an angel all day! I was at work for 6 hours, so Annie got her up from her first nap, gave her lunch and played with her for that whole awake time, put her down for her afternoon nap, and then got her up again before I got home. I'm so glad that she was happy that whole time! I was a little worried that because we never really leave her with anyone, she might be unhappy about it because she's not used to it, but yet again she has proved to be a happy, amiable and flexible little girl, which makes me very happy! She's so lovely!
She's still not crawling, because still hasn't figured out the flapping her arms and legs about like a little seal doesn't actually get her anywhere! But she looks extremely cute while she does it. And she always looks so surprised when she looks up and discovers that she isn't any closer to whatever it was that she was trying to reach. She's getting more comfortable in hands and knees position, and sometimes rocks back on forth a little bit which is good because she's starting to find her centre I think. She's still rolling everywhere and when I leave the room she's never where I left her when I come back!
She's also still saying practically everything except "mama"!!! Okay, not really, but sometimes it seems like it! She's got the "mmm" down, so that's half way there, right?? Her newest sound has been "ssss", which she discovered while playing with her new teeth, and she likes to repeat it when I say it to her. "dad" is still one of her favourites too! One of these days I'm sure she'll say my name, but for now I'll make do with "bub".

Saturday, September 09, 2006

Physical Therapy

Twice a month Avery has physical therapy sessions to help her stay on track with her development, and I thought I'd talk about that a little bit. Before Avery was dicharged from the hospital after she was born, a PT came to talk to us about her, saying that she thought her muscle tone and whatnot wasn't quite what it ought to be, so someone from Early Intervention would be contacting us to arrange coming out to our house to evaluate Avery's physical state and decide how much help, if any, she might need. So at the end of March they came out to see her, and established that it would probably be beneficial for her if she got physical therapy. Her gross motor skills were the main reason for this, because as far as they could see during the evaluation, she was still working at pretty much a newborn level. Poor baby, she had such a thin little neck and overly heavy head, it was extremely frustrating for her to be on her tummy because although she was trying really hard, she could hardly move her head at all. Understandably. So they made a list of goals for her and target dates for when they hoped for her to achieve them. So this is how that looks-


  1. 05/29/06 Lift her head for 15 seconds in midline while on tummy twice a day

  2. 07/29/06 Roll in both directions (back->tummy, tummy->back)

  3. 09/29/06 Sit unsupported (placed in sitting) 3 times a day for 1 minute each time

  4. 11/29/06 Get out of sitting to both sides independently

  5. 12/29/06 Get into sitting using arms to push up, to both sides twice a day

  6. 01/29/07 Get onto hands and knees for 20 seconds three times a day

  7. 03/29/07 Crawl 25 feet 3 times a day

Thursday, August 31, 2006

Pictures

Family Picture, August 2006.
Say Cheese!!

Avery; the cutest little frog in the whole wide world!
"I may be messy, but I did it myself and I'm so proud!"
I'm so adorable

Wednesday, August 30, 2006

Dandy Walker

I don't think I mentioned before that Avery's neurosurgeon thinks that the cause of her hydrocephalus is something called Dandy Walker Syndrome although I don't think that is known for sure yet. The more I read on it myself, the more I think that she probably doesn't have it. I don't know, from what I've read it sounds as though Dandy Walker is usually associated with other defects and malformations with the face, heart, spine, fingers, etc etc, and Avery doesn't seem to have anything else wrong with her. The only thing that may or not be associated with something like that would be her eye thing, if she does turn out to have Duanes syndrome or something. But other than that... And also, it sounds like Dandy walker usually causes an partial or complete absence of the cerebellar vermis, which is that area between the two hemispheres of the brain, and unless I'm mistaken because I'm not a brain expert, her MRIs made it look like there was nothing wrong there - I'm sure I saw a clear divide between, and I've checked a couple of times. Am I just clinging to foolish hopes? I don't think so, but maybe I am. See, it's just that the presence of Dandy Walker would be another thing that would decrease her chances of developing normally, but as I've said before, she seems to be so normal!!! She's pretty much on track with everything the books say she should be doing. And I do a lot of reading about that sort of thing.
That's actually been another thing that's bothered me with her neurosurgeon. When we've questioned the care she's getting, they say, "Well, it's not an exact science you see, and we're pretty much going on how you say she's doing, and if you say she's doing fine then that means we're doing our job", and sometimes when I think about that it really bothers me because here I am, totally inexperienced when it comes to babies, and while I am doing everything I can to learn everything I need to know, and am reading everything I can get my hands on, I am not the one with all the years of training.... they are. Shouldn't they be capable of keeping a better track of her progress and the reliability and effectiveness of her shunt? I just have a really hard time trusting that they're doing what's best for her. When her neurosurgeon doesn't even take the time to look at her chart before he walks in the room to check whether she's a boy or a girl, that bothers me. And when we're constantly being asked, "Now, what was her shunt set at...?" because they don't know, that bothers me. And when, after being told that an MRI is very likely to change the setting in her kind of shunt, they try to cancel our follow up appointment after her MRI, that really bothers me. It was only because we had the hospital call the doctor's office and say "shouldn't she be coming in to have her shunt checked after her MRI" that they said, "Oh, well, okay, I guess she can come on in after she's done" that they actually saw her. And her setting had changed. At least, they think it had, he said "Well, I can't remember what it was set at before, but lets see how she does with it at this setting."
Do you see why I have so little confidence in Avery's neurosurgeon? This is why we took her to UVa for a second opinion. The doctor up at UVa was much nicer, and much more helpful and responsive to our questions and concerns. He said that with regards to what's actually been done for Avery, from what he can see he probably would have been doing the same things, so that made us feel a little better. But I think we'll take her up there again once she's had her second MRI in a couple of months to see if he's still in agreement with her current doctor.

Tuesday, August 22, 2006

Avery's eyes

So, this morning Avery had an appointment with an opthamologist (this spell checker doesn't know that word). Her left eye has a tendency to turn in, and when we saw the developmental neurologist a month or so ago, it seemed to be affecting her ability to track properly to the left. That particular problem seems to have solved itself since then and she's tracking and grabbing and turning really well in both directions, but her eye still turns inwards quite often, so the neurologist's office made an appointment for her to see an eye doctor to get it checked out. So, he says it's one of two things. It's either Duane's Syndrome (hopefully not) or Sixth Nerve Palsy, which he thinks is more likely and also more easily fixed. So right now he's not going to do anything because he wants to see first whether it will straighten out on its own, which it may well do. I was expecting to just have him tell me that she had a lazy eye though and put a patch on her, but oh well. All is and will be well.
I left the house at 7:30 this morning for Avery's appointment, and since Gabe didn't start work til 10:30 and he has a busy couple of days ahead of him, I left him sleeping in bed. Avery's appointment took longer than I thought it would, partly on account of me having to change her entire outfit as soon as we got there because of an explosive diaper, and partly due to having to wait 30mins for the eye drops to make her eyes dilate. That and it was all the way over in Salem! teehee! Next time we've got an appointment downtown instead. So anyway, I got back probably about 10 or 15 minutes after Gabe left for work, so I was thinking I wasn't going to be seeing him at all today because he's observing tonight down at the Rescue Squad again, and last time he didn't get home til probably about 1am. So that didn't make me feel good because, funnily enough, I like seeing my husband and I miss him if I have to go a whole day without seeing him! I'm sure it's going to happen more often over the next couple of years though, what with his EMT and Paramedic stuff getting under way, and then the PA course. So I should get used to the idea I suppose. Luckily though I did get to see him for a couple of minutes today, since he accidentally left behind some paperwork he needed to fax, and he didn't have any lunch, so I made him some lunch and took his papers to him at work. All the ladies oohed and ahhed over Avery, who was looking particularly cute in that adorable little white hat of hers! Her poor little eyes though were still dilated, so the world must have been so bright all day today! I tried to shield her from as much light as possible though. But Gabe was glad to see us, and I'm glad he got to see Avery today. Because at least with me, I'm sure he saw a little of me through sleepy eyes this morning as I was getting ready, and when he comes home he'll be getting into the same bed as me, but if I hadn't gone by to the bank today, he would have gone all day without seeing his beautiful little girl. So sad. I suppose some people are just built to withstand having to be away from their families for days or weeks on end, but not us. That would be so hard. For me, at least, and I'm hoping it would be hard for Gabe too!! Teehee, I'm positive it would.
It's my birthday this weekend - I'm going to be 24. How fun!

Friday, August 11, 2006

My baby girl






Well, since I last wrote, everything in my life has changed! We have a beautiful baby girl named Avery Marie, and she is the most amazing little girl in the world! I could never have imagined how much I would love this baby. I've never been a "baby person", but I love being a Mother, and I love Avery. She was born on Valentine's Day. Gabe is completely besotted with her too, and life is generally great!
Okay, before I carry on, I should really take a moment to update you with everything important that has happened since...whenever it was I last wrote in here. So. The rest of my pregnancy was smooth right up until the end when I had an ultrasound at the beginning of February and they told us that the baby had congenital hydrocephalus. This news hit us like a bombshell, since we had no idea that there was anything wrong at all....nobody ever wants to hear the words "...There is one thing..." This was on the Thursday at my regular ob-gyn clinic, and then we had all weekend to panic and hope and spend far too much time researching on the internet before we saw the pre-natal diagnostics doctor on the Monday. That was when it was confirmed that Avery had hydrocephalus, and they said that at 36 weeks, her head was already too big to fit through the birth canal so she would have to be delivered by c-section (another shock since I had been planning on going totally natural), and we were told all the worst possible scenarios as far as Avery's condition and development were concerned. The good news was that there appeared to be no other birth defects that are often associated with hydrocephalus (heart enlargement, spina bifida, other spinal defects, etc), and that the condition was not apparent when I had my 20 week scan. Needless to say, we spent a lot of time on our knees over the course of those next couple of weeks, praying that this baby would be given the chance to have a good life. We went through some genetic testing that day too, which revealed the good news that it will not be something that we should have to worry about with any future children, and we were also told that everything looked good as far as chromosones went, which meant that she didn't have downs syndrome or any other chromosonal defect. Of course, at the time, all this "good" news wasn't exactly soothing the turmoil inside me because all I knew was that the perfect little baby I had been looking forward to and falling in love with for the past 8 months was actually very sick. I called my mother the next day to tell her the news, and she arrived on a plane from England the day after that. They tested for lung maturity because of course we all wanted the baby to be born as soon as possible so that she could get the help she needed before it got any worse. They scheduled me for a c-section on February 15th, dependant on the test results, but early in the morning of February 14th, my water broke - Avery was ready to be born no matter what anybody said! So at 2:30pm that afternoon she was born, and just hearing her sweet litte cry and seeing her beautiful little face for the first time was the most overwhelmingly amazing feeling in the world. Gabe held her, and they brought her to me so that I could kiss her and marvel over how beautiful she was, and then they took her away. But as I lay in the recovery room feeling sleepy and numb from the drugs, I remember just feeling so ecstatic to know that my little girl was finally here, and that despite the hydrocephalus, she was able to breathe and squirm and kick and cry. I was such a bundle of relief and hope and joy that I could actually not stop myself from smiling and letting out the occasional sigh of happiness as the nurse went about her duties. Ah...even the memory of it as I write this makes me smile.
Avery went straight up to the NICU, and it seemed like an eternity before we were able to go up there to see her that evening. And she was beautiful and soft and smooth, and I could have sat there and stared at her all night if they had let me! Anyway, she had her shunt placed on the morning of February 16th, and she coped with the surgery very well, and then she was able to come home with us when she was 10 days old, which was, thankfully, a lot sooner than we had been told to anticipate. All in all, she is just...well, amazing.
She has been having physical therapy twice a month, and we took her up to UVa to get a second opinion because we haven't been happy with her neurosurgeon, but she generally looks and behaves like a normal, healthy baby, and I just feel so optimistic about her future. She is doing so, so well.
My mother was here for 2 months, which was a huge help, and then after she left we were here for just over a month before we took a long-awaited trip to England for the first time since we've been married. I worried about Avery with the flight and the pressure change, and the 4 week period away from her doctors, but she was perfect. Of course. But I will have to write about our England trip another time. I think this is a long enough entry as it is :)

Friday, March 31, 2006

Early Intervention

So I've decided to start a new thing - Flashback Fridays! Since I only started this blog last November when Avery was already 20 months old, there is a lot I haven't talked about. SO I'm going to try and remedy that and make an effort to tell her whole story in pieces. So while I probably won't be good enough to do this every Friday, I will try to me Flashback Fridays a fairly regular thing :)
Today I think I'll talk about how Avery got into the Early Intervention program.
During the 10 days following Avery's birth when she was still in the hospital, she was visited by seemingly countless doctors, specialists and therapists. One of these was a physical therapist named Angela-something. The day Avery was released was a bit of a chaotic and exciting blur because I got a call as I was in the hospital elevator with my Mother on our way up to see Avery, and they said that Avery was going to be released that day, and then there were about a billion people who needed to talk to me and/or make me sign something, one of whom was this physical therapist. I remember thinking it was a little ridiculous that Avery had been seen by a physical therapist, because how much could a newborn baby be expected to be capable of?? Anyway, she explained that Avery's muscle tone didn't seem quite right, and that she wasn't holding her body as well as she should be when she was picked up. Again, I thought this was silly at the time, but since having my son 2 months ago, I am now more aware of how weak and floppy Avery's sweet little body really was when she was born, because my son just seems to be so strong, especially his legs, and I know Avery's legs were never like that. So at the time, not knowing any better, I was skeptical, but listened to her anyway, and she told me that someone from Early Intervention would be contacting us to arrange coming out to our house to evaluate Avery's physical state and decide how much help, if any, she might need. So at the end of March 2006, when Avery was about 6 weeks old, Avery's "team" came out to see her, and established it would probably be beneficial for her if she got physical therapy. Her gross motor skills were the main reason for this, because as far as they could see during the evaluation, she was still working at pretty much a newborn level. Poor baby, she had such a thin little neck and overly heavy head, it was extremely frustrating for her to be on her tummy because although she was trying really hard, she could hardly move her head at all. Understandably. So they made a list of goals for her and target dates for when they hoped for her to achieve them. So this was how that looked-
  1. 05/29/06 Lift her head for 15 seconds in midline while on tummy twice a day
  2. 07/29/06 Roll in both directions (back->tummy, tummy->back)
  3. 09/29/06 Sit unsupported (placed in sitting) 3 times a day for 1 minute each time
  4. 01/29/06 Get out of sitting to both sides independently
  5. 12/29/06 Get into sitting using arms to push up, to both sides twice a day
  6. 01/29/07 Get onto hands and knees for 20 seconds three times a day
  7. 03/29/07 Crawl 25 feet 3 times a day

Avery started having twice monthly visits from her physical therapist. I don't remember the first girl's name, but after a couple of months we were given a new PT, Lisa, who is still Avery's physical therapist today, although she works at the hospital these days and not for Early Intervention. We love her. After a few months, once Avery was old enough to be awake and active for longer periods of time, we started having the PT sessions every week. Sometimes she loved it and was cooperative, and other times she hated it, but Lisa has always been really great at getting the most out of her, and Avery just loves her. Of the goals listed above, Avery reached the first couple not too far behind schedule, although I remember rolling was not a fun thing for her to learn. #6 took a long time...in fact, although Avery was able to stay sitting for 30 seconds or so if placed in that position well before she was a year old, she wasn't able to get into the sitting postion by herself until she started crawling at about 14 months, and even then it was by pushing back from crawling into a W position. She still has a strong preference for that position, which is not good for her. She can now sit cross-legged or with her legs straight in front of her, but she doesn't like it, and her back is still quite curved under in those positions, giving her quite poor posture.

Tuesday, February 28, 2006

Avery's First Two Days in The World

It wasn't until about 7pm that night that we were allowed to go upstairs to the NICU to see our little girl. With a lot of help I was finally able to get out of bed and into a wheelchair and my sweet husband wheeled me up to the 9th floor, IV in tow, and we pushed the button and waited for them to let us in. She was beautiful.

As you can see, she had all kinds of moniters and devices strapped up to her, but she was strong enough that she didn't need to be enclosed in an incubater, and we were able to touch her. As you can see from the next picture, she was also strong enough to kick and scream and let us know that she wasn't happy in this frightening new world she had been forced into!


Since I was still rather drugged and dazed after the c-section, my memory isn't great when it comes to the order of things in those first few days, but I think it was that night that the neurosurgeon came to our room to talk to us about the surgery Avery would be undergoing. She was scheduled to have her shunt placed at about 7:30am on Thursday morning. Poor baby, what a welcome to the world!


For those of you who may not know much about hydrocephalus or what a shunt is, let me explain it the way I understand it. Congenital hydrocephalus can be caused by many different things - in Avery's case it appears that she had a cyst in her fourth ventricle and this was what caused the blockage which prevented the cerebrospinal fluid (CSF) from draining properly from her brain. This cause of hydrocephalus is called the Dandy Walker Varient. Without any treatment, the pressure on her brain would have continued to build up, and her brain tissue would have been more and more squashed against her skull causing extensive damage, and as her skull began to harden and fuse together after birth, the danger would have been even greater. Basically, if left untreated, this condition would have killed my daughter and/or left her with no quality of life to speak of. Even fifty years ago this would have been her prognosis, and we would have lost our first child. In the past 50 years or so though, medical advances have created a chance for these precious babies to not only survive, but also to thrive. Less than 48 hous after my sweet girl was born into the world, she would be undergoing surgery to have a Ventriculoperitoneal shunt (or VP shunt) placed in her brain, which was designed to relieve the intracranial pressure and allow the CSF to drain into her abdominal cavity where it would be absorbed by her body. The doctor explained that the site which had been chosen for her shunt was just behind her right ear. A hole would be bored into her skull to allow the tube to be inserted and pushed through her brain tissue until it reached the swollen ventricles, then the shunt valve would be secured under her scalp and the tube would continue down under her scalp, down the side of her neck, over her collar bone and chest and into her abdomen. The hardware would all be internal, and the only incisions would be the large incision on her scalp and a small incision on her tummy.


Of course, preparing for surgery of any kind is always scary, but this was terrifying. I had to push from my mind all the possible terrible things that could possibly happen, and put my faith in God and the hands that would be performing the surgery, and that kept me sane.


The plan was to not give Avery any nourishment until after her surgery, but by the time we got up to see her on Wednesday morning her nurse said that she had just been so hungry that she had got doctor's permission to prepare a little formula for her, and I was able to hold my little girl for the first time and give her her first bottle. They needed to moniter how mush she drank, and since I hadn't been able to pump more than a couple of drops of breastmilk yet, I was fine with her having formula.


I was just in heaven being able to hold her for the first time! The pillow on my lap helped to protect my incision a little, but it still hurt quite a bit to hold her, but I didn't tell anyone because I didn't want anyone to take her away!! She was more than worth the discomfort! I couldn't keep my eyes off her!

First Photos

It's a girl!!

Daddy's first touch

Big girl! (But so tiny....)


First Kiss


First Family Picture

Welcome to Holland: Part Two

The good news was that there didn't appear to be anything wrong with the baby's heart or spine, which meant that it was likely that she didn't have spina bifida or some of the other conditions often associated with hydrocephalus. It also didn't appear to be genetic, which meant that any other children we have will have as good a chance as anyone to be born perfectly normal. None of this good news seemed to soothe our pain though. At one point I remember we were talking about how our little girl's life might be like, and the possibilities that she might be noticably handicapped in one way or the other, and we were worrying about the cruelty of children when it comes to that sort of thing, and Gabe said "You know, I hope no one ever picks on her, because I'd hate to get sent to jail for beating up a twelve year old." That made me laugh. But I knew what he meant. The crazy thing was that hearing the terrible news had somehow made us realise how in love with this baby we were before she'd even been born! It took us about a year and a half and one miscarriage to finally get pregnant with her, so we'd been looking forward to having her for a long time, and we all of a sudden began to understand the unconditional love a parent has for their child, even before they are born.

On February 6th, 2006, when we were at the prenatal diagnostics office, they did an amniocentesis to check for lung maturity, because they wanted to deliver the baby as soon as possible so that they could get her the help she needed. This is where in hindsight I get a little angry and wonder whether things weren't done as well as they could have been. I don't of course remember all the exact numbers and figures, but I think the number they were looking for to indicate likely lung maturity was something between 52 - 59, and the number they got from the amnio was 49, so they said that there was a chance that her lungs weren't quite mature yet, so they sent me home. An ob-gyn friend of ours had an office in the same building so before we left we stopped by his office on the off-chance that he was there to tell him what was going on and get some sort of comfort. His first reaction was basically "Why aren't you in the delivery room?", and he went off to speak to the other doctor to see what was going on. Apparently the neurosurgeon thought it best to delay the birth because he said it would be better not to run the added risk of lung complications. Now, at the time, I thought, okay, fine, I want my baby's lungs to work properly, although the frustration of knowing that the pressure on my little baby's brain was increasing day by day, as was the risk of permanent damage, and knowing that there was nothing that could be done for her until she was born - do I need to tell you how frustrating and heartbreaking that was to live through? I have since learned that steroids are often administered to accelerate lung maturation. My sister-in-law started contracting and dilating early in her third trimester with both her babies, and both times was given steriods to develop the lungs just in case the baby did come early. Why, then, did no-one offer me anything for my baby's lungs? I know it would only have made a difference of a few days, but considering my baby's condition, those few days surely could have made a difference. The hydrocephalus was not present at my 20 week scan, which means that it developed sometime in the 15 weeks following that, and when you're talking about a maximum of 100 days from perfectly healthy to seriously unwell, 8 days could surely make all the difference. Maybe those 8 days could have meant that my little girl would be walking by now. And it was probably a lot less than 100 days too - my NP who looked after me while I was pregnant said that the reason she ordered that last sonogram in which the hydrocephalus was detected was not to estimate birth weight, but it was because at my regular 33 week check-up, my measurements were off, when they had been perfectly normal up until that point. Anyway, every time I think about that, now with the knowledge that steriods are regularly used to develop lungs, it makes me so angry, and makes me wonder whether I should be doing anything about it legally. If there's a chance that my baby girl would not have developed cerebral palsy had she been born and treated up to 2 weeks sooner, shouldn't somebody be held responsible for that? I don't know.

Anyway. Back to the timeline. February 6th her lungs were deemed likely to be immature, so we went home and worried and prayed and worried some more. I finally managed to get hold of my mother in England on Tuesday morning by sending text messagess and IMs to my brother, sister and grandma asking them to tell her to call me (our calling plan does not include international calling - my mother calls me once a week on Sundays, and I hadn't told her anything the previous sunday because I didn't want her to worry until we knew for sure), so finally I was able to speak to my mother, and told her that the baby had hydrocephalus. Luckily, she had heard of it and knew what it was, so I didn't have to explain it to her. Thanks to several members of my family, my mother was on a plane the next day and was with us by Wednesday night.

I was scheduled for another amniocentesis the following Wednesday, which was February 15th 2006. They said that if the baby's lungs looked like they were mature at that pojnt then they would schedule me for a c-section that afternoon, but if not then we would go back to waiting. Thankfully, God knows better than any of these doctors, and in the early hours of February 14th, my water broke, and my sweet baby girl was born at 2:35pm on Valentine's Day, 2006. There never was a sweeter sound than that of Avery Marie Andersen's first cry. We didn't know what sort of condition she would be in when she entered this world, so to see that beautiful little girl kicking and screaming, and to be able to kiss her soft sweet cheek as my husband held her up to me, the world was suddenly a happy place again. No matter what was in store for us and our little girl, she was alive, she was breathing and she was moving! They took her up to the NICU after that, and as I lay in the recovery room after they'd stitched me up, I couldn't help but grin from ear to ear, and even now as I think of it, I still almost cry from joy.

Welcome to Holland: Part One

Those of you who have been blessed with special children probably are familiar with the article "Welcome to Holland". If not, please read it. It is about the experience of learning that your perfect baby has a severe medical problem. This is something that I think you cannot imagine unless you have actually experienced it. People say, "Oh, that must have been so hard for you when you found out", and yes, it was, but what they can never understand is that the joy my special baby has given me, and continues to give me, far outweighs the heartache I experienced when I found out she had hydrocephalus! This blog is going to be about the joy of my little girl's life, but in this first post I want to talk about the hard part: Finding Out.

I was 35 weeks pregnant when I found out that the perfect baby I had been carrying for 8 months had hydrocephalus - a condition I had never even heard of before that moment. My husband had come with me to a sonogram on Thursday February 2nd, 2006, which had been scheduled to get an estimate birth weight and size of my baby, who was due on March 4th. We were delighting in the image of our little miracle up there on the screen, and didn't think much of it when the technician said, "I just want to check something, hang on" and pulled out the printed images from my 20 week scan. A couple of minutes later she proceeded to tell us that the baby looked to be a healthy size and weight. Then came the words no parents-to-be ever want to hear: "There is one thing...", and she told us that it looked as though cerebrospinal fluid (CSF) was not draining properly from the baby's brain, which meant that the ventricles had filled up with fluid and squashed the brain tissue into a thin layer under the skull, which had already expanded to the point that there was no way it would fit through the birth canal. Before we left the doctor's office that day they made an appointment for us at Prenatal Diagnostics, but they weren't able to get us in until Monday, which meant that we had an entire long weekend to think about and stew over the whole thing.

I can tell you that I left the doctor's office that Thursday afternoon in a stupified daze. Of course, because I had never heard of hydrocephalus before, I was trying to memorise the name so I could look it up, and it still hadn't sunk in that this was really happening. I can remember being very concerned about having to have a c-section because I had planned to go natural! Just a minor detail in the long run of course, but that was the only thing I was able to wrap my head around at that time!

I am a person who has always had a deep faith in a loving God, and my husband also, so of course we both spent a lot of time over those next few days on our knees praying that this baby's sickness would be healed. We spent every available moment on the internet reading up about hydrocephalus and filling our heads with all sorts of scary statistics and figures. I kept on hoping that when we showed up at the Prenatal Diagnostics appointment on Monday they would take a look and say, "Well, I don't know why they told you that, there's nothing wrong with this baby!" On Sunday Gabe and I both had blessings, and I sat down fully expecting to hear "Don't worry, all will be well", but instead I heard, "You will be blessed with the strength to get through this, and you will be blessed with joy". That was when it first hit me that this baby really was sick. That was when my tears came, and all Gabe could do was hold me.

It hit Gabe the next day at the doctor's office. Of course, they did confirm that Avery really did have hydrocephalus, and we were sent all over the building for different tests and scans. We were sat down with doctors and advisors and counselors and bombarded with statements and questions and warnings. At one point we were sitting in a room by ourselves and Gabe was calling his mother to ask her whether there was any history of birth defects in the family, and that was when he broke down.
At this point of course we were being told all the worst case scenarios, and we had know idea whether our sweet little baby would even be able to function, let alone at what level. We were told to prepare for the possibility that she would have severe physical and/or mental disabilities. There are no words to explain how it feels to have the perfect baby you've been planning for taken away from you like that.
More on the arrival of our little girl next time...

February 2006 - Avery's birth and stay in the NICU