February 2006 - Avery's birth and stay in the NICU
Posted Feb 28 2006 12:00am
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!