Friday, February 13, 2009

Flash back Friday: Shunt surgery

Tomorrow will be my baby's 3rd birthday! I can't believe how fast time is flying. My beautiful girl. This time 3 years ago I was a bag of nerves waiting for my little one to be born - frustrated that we were still having to wait because I knew there was nothing that could be done for her until she was born. I was scheduled to have a c-section on the morning of the 15th if the amnio showed that her lungs were mature. On this night 3 years ago my husband and I went out to celebrate Valentines day one day early because he was supposed to be at school on the actual night of valentines day. It was the first time really since Avery's diagnosis that I'd been able to really relax a little bit and enjoy spending some time with my husband. Then, that night at about 3:30am my water broke, and at about 5am or so I woke Gabe up and told him, and we called the doctor. I had a big valentines day breakfast planned for Gabe though, and that was my "gift" to him, so I didn't want to skip it, so I still made it for him!! Probably not the best idea, but I wasn't really having painful contractions, and I'd bought strawberries and stuff especially for it, so I insisted on doing it anyway!! :) My mother had flown in the day after we told her about Avery's diagnosis, so we woke her up too before breakfast, and then we set off. I've written about the day of Avery's birth before here, so I'm not really going to write much more about it now. I do want to talk a little bit about her shunt surgery because I haven't really talked much about that before.

Avery's surgery was scheduled for the morning of February 16th, when she was not quite 48 hours old. It was scary. I found that I had to not think about all the risks and dangers, because I would probably have lost my mind!
A year or so ago I wrote an article for Helium about preparing for Avery's surgery, so I'll just paste that in here and then post some photos too.
Babies are amazing.
My little girl underwent surgery when she was two days old. When I was 35 weeks pregnant with her she was diagnosed with congenital Hydrocephalus, with Dandy Walker variant, which meant fluid was unable to drain from the ventricles in her brain the way it should. So after planning for a natural birth, my baby had to be delivered by c-section, and then be prepared for a surgery which involved being put under general anesthetic, having a hole drilled into her skull through which a tube would be inserted through brain tissue until it reached her fluid-filled ventricles, and then having a tube pushed under her skin, down her neck, over her chest and into her abdomen, to drain the fluid. There is nothing minor about that kind of surgery, especially when it's to be performed on your own tiny newborn child. Yes, I was terrified by the risks that the surgery itself presented, but I knew that without it my little girl would have no chance at life.
As a parent of a baby who needs surgery, there is nothing easy about your new, terrifying situation. You are cruelly launched headfirst into one of those experiences you hear about, but never imagine for a moment that you'll experience first hand. In our case, we found out our daughter would need surgery two weeks before she was born. Honestly, in a lot of ways the hardest part was waiting for her to be born, because we knew she needed help and she couldn't get it until she was born. I felt so desperately helpless. In the ultrasounds, I could see how her sweet little enlarged head was under so much pressure that her brain tissue was squashed against her skull, and I couldn't help but think that she must be in pain. I felt so much relief when my water unexpectedly broke, because I knew it meant that my baby would be born that day, and that she would finally be able to get the help she so desperately needed.
My daughter was officially diagnosed with hydrocephalus on February 6th, she was born on February 14th, and had surgery on the 16th, but to this day I find it hard to believe that it was only ten days of waiting! It truly was the longest ten days of my life. Every second seemed to last forever, because I knew that every second presented an even higher risk of irreversible damage - a higher risk that my little girl would never be given the chance to lead a normal life.
How did I deal with the situation thrust upon me? I have always been a religious person, but I can honestly say that I probably spent more time praying in those ten long days than I'd ever prayed before. My husband and I leaned on each other for support - some days he'd be the strong one, and other days I would be stronger. I studied and researched and absorbed every piece of information I could lay my eyes on about hydrocephalus and the surgery she would be receiving. After my daughter was finally born, there was relief and hope, even though her future was still uncertain. She was here, and something could finally be done. I spent every moment possible sitting next to her in the NICU in my wheelchair, in awe of her beauty and the sweet sweet spirit that she already possessed. I sat there touching her, stroking her soft, sweet skin, breathing her in, and feeling pain and sorrow for every heel prick, every IV, and every monitor hooked up to her. The day of her surgery we went with her for as far as they would let us, reluctantly kissed her goodbye, and went back upstairs where we tried not to watch the clock as we waited and prayed and hoped, and tried to occupy and distract ourselves. Finally we got word that she was out of surgery, and all had gone well. We were able to go see her back up in the NICU where she was sleeping, but still able to breathe on her own. She coped so well with the surgery, and recovered so quickly that it was only eight days later that we were finally able to bring our baby home.
I am so filled with gratitude when I think that even 50 years ago my daughter may not have even survived, let alone grown to be the sweet, happy, bright little 18 month old that she is today.

Gabe giving her one last kiss before they took her down to surgery. We went with her as far as they would let us go, and then came the waiting which seemed eternal!

Here she is sedated after surgery. Notice that her gauze dressings are heart-shaped :) She was born on valentine's day, so they gave her valentine's dressing :) I thought that was cute.

A tired looking Daddy.

After the dressings were taken off. She was a little jaundiced so they put her under the bili lights. I love how warm and cozy she looks here :)

This big shunt and incision looked so scary and huge at the time. It is so amazing how well babies cope with surgery. On of the other scary things was that because she had to lie on the same side of her head for so long after she had her shunt placed, and because so much fluid was draining from her head, she got a dent on the other side of her head that was almost an inch deep. It did finally even out, but we did ask her nurses and dictirs about it because it was so worrying to see and feel.


Hamza Zakir said...

im new to your blog so this is the first time i read about ur experince.....
i was told about my son's hydrocaphlis when he was 20 weeks along....i had to have c-section to because of him and because they were twins! son also has Dandy Walker!
you did sooo well....god bless your family

Sarah said...

Thanks for sharing Avery's shunt sugery story...brings memories of Violet's flooding back to me.

Happy Birthday to Avery!

Family said...

Appreciate your blog! Praying all is well as you have not posted in a while. I have a son with CP and shunt who is a year and a half; one revision already. I'll be watching your blog bro - God Bless!