A Little Something Extra

Tuesday, November 13, 2007

The rest of our CHW visit

Crazy. It's been five days since my last post. Sorry about that. I know I said I'd follow up with some more information about the rest of our day in Milwaukee but I haven't felt much like writing.

Here's a summary:
Our coordinator and primary contact at Children's Hospital of Wisconsin (CHW) is Andrea. She first introduced us to a Child Life Specialist, who gave us some good ideas of things to do for Nathan to adjust to life with a baby brother in the hospital (such as a brag book of his own filled with pictures of the baby and a doctor's kit for Christmas).

The next person we met was a genetic counselor who presented us with an opportunity to be part of a research study. In a nutshell, there are some doctors trying to come up with a blood test that could replace an amnio to provide women with a genetic diagnosis of their child in utero. We told her we'd get back to her. It's a tough call, really. I mean, it will probably happen anyway. But ultimately, what purpose does an early diagnosis serve? There is no "cure" and nothing that can be done to alter genetics in utero, so will a test like this serve to cause more women to abort their babies if they find out their child isn't perfect genetically? Yikes.

Next up: pediatric surgeon. He did a great job of explaining the baby's first surgery (at the time of meeting him, we hadn't heard about the heart issue yet), which will likely be the day after he's born. The doctor told us how the surgeons will work together with the neonatologists in the NICU both before and after surgery.

The next appointment was with the perinatologist (high-risk obstetrician). I told you about some of that appointment in my Ultrasounds post. He also expressed concern over the high level of amniotic fluid that is already present (and it will continue to go up). He did say that he was glad this wasn't my first pregnancy and that it was a good thing that I went full-term with Nathan (so my uterus has already been "stretched" ... nice, huh?). He did sound a bit more concerned about my Braxton Hicks contractions than my other doctors have been. But I don't know if I'll even see this guy again because it could be any one of four of them in his practice who deliver this baby.

The next appointment, after finding out about the AV Canal, was with a neonatologist. Nice enough guy (even though he went to Notre Dame), but he decided for some reason that it was his place to share with us other "issues" our child could face in the future due to Down syndrome. After I had to correct him on two counts because he was quoting from what was likely an outdated textbook when he was in college, I pretty much tuned him out. I mean, really... our son is going to be under his care for about four weeks. Shouldn't he be focused on those four weeks instead of talking out his you-know-what about Down syndrome?

By this time we were running behind. We could have gone on a tour of the NICU and birth center, met with the lactation consultant, or postponed both for our next visit (11/26). The lactation consultant was in the hallway and she was definitely willing to wait until next time, but we decided to just go ahead and talk with her since she was there. Feeding is going to be quite an issue with this little one. During our talk, I think she sensed that I was about to lose it so she didn't go into much detail about potential feeding issues in children with Down syndrome, especially following this particular surgery. Good thing. And given my emotional state when we left, it's probably good that we didn't tour the NICU.

Well, that's it for our first visit to CHW. I'll post more later about specific prayer requests.


Jonathan said...


We are praying.

Love and prayers,

ATLKrafts said...

Hang in there-- it is always overwhelming with that many visits and "worst case scenarios"... sounds like you will have a lot of support.