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