I was scheduled for my routine check up at my OBGYN. My husband happened to have a 24hr leave from Ft. Bragg so he joined me. When we arrived I asked if they could do an ultrasound just so he could see her one more time. While doing the normal weight check, measurements (ZoŽ looked great), and that's when they saw my BP was elevated so they gave me a couple of minutes to relax cause they understood what stress I was under ( husband deploying). But anyway my BP did not go down, so they directed us to the hospital immediately.
Of course I was scared and didn't know what to expect. So upon being admitted with a BP of 235/115 they started me on every drug possible to help me. Everyday they were able to keep ZoŽ in the better for her development but my body had a different idea. By the end of only one week my body had developed severe preeclampsia (HELLP syndrome) so my kidneys, liver, and so on were shutting down so I had to have an emergency C-section.
When ZoŽ was delivered 29wks @ 2.5lbs, she was kicking and screaming, lots of energy. It made me feel better hearing her cry and scream. My husband was with her the whole time and telling me that the nurses had to hold her down cause she kept pulling out her tubes, monitors and whatever else at the time had to put on her. All I saw of her was her in the isolate before they wheeled her out to the NICU. It took me about a week to recover and to go see ZoŽ; I had serious complications after birth. ZoŽ on the other-hand was doing well. It was about three weeks before we could hold her.
After about 3wks they noticed that ZoŽ was retaining fluid in the head so they started with spinal taps to drain the fluid. They told us that her ventricles were not shrinking, but they were going to give her time for her ventricles to reverse themselves. Time they gave her but when spinal taps stopped working they inserted a balloon at the top of her head to continue draining the fluid. During this time my mother n law, sister n law did a lot of research for me so we could ALL understand what hydrocephalus was, is, effects of, and outcome.
I needed to understand what was going on besides what the doctors were telling us. And of course the (doctors) were telling us all of the "cons" about hydrocephalus and what to expect with ZoŽ. I truly was upset the entire time because I knew this would be hard on ZoŽ but on us as parents. She was perfectly fine when she was in the belly but then acquired this disease for an unknown reason, and we as her parents could not change that. So by the time she was 2months old (normal age) her ventricles showed no signs of reversing so the doctor instructed us a shunt would need to be placed. This would be ZoŽís third surgery, so far.
After being released two weeks before her actual due date, ZoŽ was coming home at 4 1/2lbs with a VP shunt. I was prepared as best I could be. With my husband overseas (18months total), I was on my own to look for any malfunctions. So I had ZoŽ in a bubble, I didn't go back to work, never had her in a public place, no outsiders besides parents, in-laws and sister n law to keep all the germs away. I did everything possible in my head to keep her healthy and malfunction free.
ZoŽ started with every six months a Neuro check up(CT scans) and then worked her way to once a year check ups. ZoŽ received physical therapy (to help her walk) from early intervention, up to age 1 1/2. She also had routine check ups with SICC (special infant care clinic) to see how she was developing mentally (hearing, sight, and motor skills). She did wonderful with that, and didn't require any extra help or assistance.
Now when ZoŽ went in for her routine CT scan at age 4 the doctor saw an increase in her ventricles. Dr. Fuchs examined ZoŽ and said she wasn't exhibiting any malfunction signs, so he'll give her a week and will re-scan because it might be a growth spurt. He felt comfortable sending her home, so we came back a week later and the ventricles were even bigger. Dr. Fuchs decided to do surgery (at Duke) and what he found was a blockage, so he replaced everything.
She came out with no problems or set backs and started Pre-k that September. The next three years were great, ZoŽ did well getting used to the school environment (cause I never had her in a daycare), joined some after school programs(drawing, leggos, music), started dance lessons(ballet/jazz/tap), swimming lessons, and cheerleading. Loves her friends and loves to be around them all the time, she misses them when she's not.
Next at the age of 7 ZoŽ came down with the signs of a malfunction, fever, vomiting, swollenness around her tubing area, so we took her to our new local Children's Hospital ER (it was a Sunday). After many tests they cleared her of no shunt problems so they sent her home with instructions of rest and Tylenol, she should be well by the end of the week, if anything persists contact our pediatrician or our new neurosurgeon. Unfortunately I had to two days later (Tuesday), same signs and the swollenness was spreading. Pediatrician instructed us to go back to ER and we did and they cleared her AGAIN, with the same instructions.
Then two days later fever free (Thursday) sent back to school. On that Saturday all the signs returned with the swelling around the shunt area now, (my mother instinct kicked in) and I wasn't going back to that Children's hospital so I called her original Neuro doctor at Duke and they told us to bring her immediately if at all possible. So we did, after an 8hr drive to NC from NJ, we arrived at Duke. The doctors immediately tapped her shunt and found she had a serious fluid infection.
She had to have her infected shunt removed (1 surgery) and three external shunts placed (3 surgery's) to drain all the infected fluid, then once all fluid was clear a new permanent adjustable shunt can be placed (1 surgery). That was a very long 22days (and 5 surgeries) but we never left her side. She was always in great spirits, asking for school work to stay busy (Duke provided a tutor), loved to paint, or walk to the playroom to stretch her legs. ZoŽ is such a strong little girl.
Between these times and ages ZoŽ has developed normally. ZoŽ has been enrolled in school and many activities. She is a very warm, kind, and gentle girl. She loves everyone and everything. We are very blessed for how strong she is. She does require a medical IEP at school but that is to give her extra time on tests & work if she asks for it or misses it. School implemented this for her because of her absences from school because of her hydrocephalus. ZoŽ loves her two younger sisters (40weeker & 32weeker) and three dogs. She knows her own limits and letís us know if something is wrong.
It has been and continues to be tough as a parent to handle a child with hydrocephalus. The cautious steps you have to take with them are limiting and sometimes nerve racking.
But we take it in stride and let ZoŽ be her own her person; we do not hold her back from trying new and exciting things.