Thursday, February 5, 2009

The long view

The big news of the day is that April 6 is the likely date for Blaise's next surgery. This surgery would reconnect her small and large intestines and, possibly, closing up her ostomy (the part of her small intestine currently coming out of her belly, which is how she poops). Some families elect to keep the ostomy open even when the intestines have been reconnected because ostomy output can be easier to manage than chronic diarrhea. We'll be talking with her doctors more about these options once we know how much of her large intestine is intact.

One thing that we know will continue is her enteral feeding. Blaise has a g-tube going directly into her stomach through which breast milk is continuously pumped at a very slow rate (currently 2.5 mL/hour). The intestine adapts when it's in contact with food, so continual contact equals maximum adaptation. Hopefully the ridges in her tiny bit of intestine will get deeper as part of this adaptation, leading to "cavernous villi." (Ben points out that "cavernous villi" could be a phrase from a Gothic novel.) Several people have asked when the g-tube is going away and the answer is probably not for years. She gets to drink some milk from a bottle and, hopefully, will be able to eat at least some food, but this continuous enteral feeding will persist for a long time. The pump runs on batteries and is very portable, so she won't have to spend all her life indoors or unable to do normal kid things. Other kids take ballet and travel abroad while getting continuous tube feeds. We hope Blaise will, too.

Speaking of tubes.... Ben and I don't watch much TV and we're pretty anti-TV for babies and toddlers, so imagine our annoyance when we kept coming into Blaise's room to find her TV on. It turns out that some of the volunteer baby-holders (Yes! You can volunteer at pediatric hospitals to hold the babies! I wish I had known about this years ago!) settle in with a baby and turn on Maury Povich. From my point of view, this kind of defeats the purpose for both the baby, who should be talked to or sung to or something, and the volunteer, who could watch Maury at home. We told the child development specialist that we didn't want Blaise's TV on and she said she would make a sign to remind people. We thought it would just be a small note but it's a huge piece of paper that covers the whole screen. The doctors and nurses all think this is hilarious.


Nancy Lee said...

Erin & Ben-
Blaise is beautiful! We will continue to pray for your family, Blaise's growth and development, and a successful surgery.
Nancy Lee & the Cure' of Ars "pray-ers"
Leawood, KS

vicki said...

Maury I understand, but surely you won't deprive her of the classics like Big Bird, Little Mermaid and King of Kash. Maybe that is something I can introduce her to when she visits KC. I am also looking forward to introducing her to “The Foot Book”, The Very Hungry Caterpillar and many other of our favorites. Mostly I can’t wait to get my hands on her. Just give her a little kiss for me and whisper in her ear how much she is loved by many here in KC.

billycord3 said...

Erin and Ben,
We appreciate the blog and the updates. The two of you are amazing and your writing is excellent. Parenthood isn't always easy but it is rewarding.
Bill and Dianne Cordaro