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.

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.