Touring the NICU

Again it has been a tough three weeks. We are doing all we can to learn about Hydrocephalus and Dandy-Walker. The yahoo groups have been the most helpful. It is a great resource to be able to find other parents and families that have gone through what you are experiencing now. Their support and information have been invaluable so far, and I”m sure it will continue to be so.
I’ve been pleased that I’ve been able to keep my appointment at three-week intervals. I know they wanted to see me every 2 weeks, that was a bit more often that I felt comfortable with. Up until now they were ok with every three weeks. I had some pre-labor, Braxton hicks contractions this week. So now I do need to come back every 2 weeks, ugh!
So we had a bit of good news this week, her ventricles remained stable at 17mm and 37 mm. We are almost 29 weeks, her body is still measuring about 4 weeks behind. We hope that her ventricles will remain stable through the rest of the pregnancy.
We had an appointment with the NICU social worker after our appointment at the Perinatal Center. Jill Edds is the social worker at the East TN Children’s Hospital. She was a very pleasant and mild mannered woman. I can see how she could be very calming to grieving parents. She showed us the procedure for entering the NICU, including how to buzz entry and how to scrub up before entering the NICU. So once we were inside it was very hard to see all of the fragile baby’s and know that we were going have our daughter here connected to all of these machines. We learned about the different kinds of beds for the baby’s to lie in. We also learned about a few of the monitors and equipment. About half way through the tour I couldn’t handle it anymore despite how hard I was trying. I burst into tears, which didn’t help my husband keep it together. It was all very overwhelming. After a few minutes, I was able to gain my composure. We met with one of the doctors that rotates care in the NICU. We sat down and spoke with him for a few minutes, he was very nice and comforting. He was the most positive doctor we’ve met so far. He explained that if there aren’t other complications, that a baby with shunt surgery for Hydrocephalus may only need to stay in the NICU for 5-7 days. We left on that positive note.
I highly suggest touring the NICU ahead of time if you have a baby that is prenatally diagnosed with Hydrocephalus. It definitely will help lessen some of the shock that you’ll be dealing with later.

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