We have another good update today—not much different from yesterday but the attending neonatologist, Dr. Baumgart, confirmed everything from the weekend. Dr. Baumgart reiterated that Madeleine continues to beat all of their predictions and this is a great sign. Perhaps the best news is that Dr. Baumgart said, “at this time, I can’t predict anything bad.” We know this is pretty hopeful and we can’t forget all of the challenges for any baby in the NICU but that reinforced our feel good feeling. For the short term, we’re not taking Madeleine out of the isolet today as she’s still a little agitated with all of the changes in her medication and we’re hoping that by tomorrow she’ll be a bit more relaxed when they begin feeding. All in all, today is pretty boring and that’s the way we like it.
Since there’s not much else to report on her current condition, let me take a second to sort out my thoughts on the future impact of missing your large intestines. First, let me encourage everyone with relevant experience to comment on this section—we’re just kinda learning. Here’s what we know about the intestines:
1) The Large intestines main purpose in life is the absorption of water.
2) The small intestines absorb nearly all of the nutrients that the body needs to survive.
3) Many people live without their large intestines. You can’t live without your small intestines.
4) Madeleine has all of her small intestines and none of her large intestines. Additionally, she has her rectum (sorry for all the graphic details) and this will allow her small intestines to be re-attached. Visually, you won't notice anything.
5) The largest struggle that Madeleine faces with the loss of her Large Intestines is dehydration. Over time, her body will learn to absorb water through the small intestines so this issue should decrease over time.
6) As far as diet is concerned, we’ve been told that long-term, there shouldn’t be major changes necessary and we’ll just need to identify any problem foods—shouldn’t be too hard.
That’s about all we know right now. To be certain, it isn’t good that she has lost her large intestines but it doesn’t seem that major to us and we’re basing this opinion on what our doctors have told us and what other friends have mentioned—we’ve learned that a couple of our friends don’t have their large intestines and we never knew. The major tricky part to all of our “knowledge” is that nearly everyone we’ve talked to—including our doctors—has only dealt with adults that are missing their large intestines. We’ve yet to hear about a specific case where an infant is missing the small intestines. We need to push the doctors to identify some cases as I’d like to talk with parents about how they worked with their infant child. After all, if an older kid or an adult is thirsty, it is easy for them to recognize it and drink a glass of water. Madeleine is doing great but she isn’t going to start speaking any time soon…
Okay, I’ve sorted my brain out and I hope it helps answer some of the questions you might have about the impact of not having your large intestines. Again, we appreciate any comments/insight that folks can offer on this topic as it is something we’ll need to begin addressing immediately once Madeleine comes home.
Take care,
Brent & Kirsten
Subscribe to:
Post Comments (Atom)
Posts
4 comments:
Wow, now there's video too! I feel like I've been visiting her almost every day. You guys are great. I don't know any kids who lost their colon early on but I'll see if friends in related fields can come up with anything. It's really lifted Ayyana and my spirits to hear such good news recently - that should give you some idea of what your blog means to us and how much we're rooting for all of you!
So glad to hear how well she is doing!! One of my friends from the NICU's son had NEC and surgery. I will give her a call and ask some questions about what he had removed and how it affects him today (he is almost 20 months old) He has numerous other eating issues due to a prolonged stay on the vent, but hopefully she will offer up some info you can use!!
keeping you guys in our prayers!
Hey, Mom and Dad Bushey, you are looking good - great pictures!! Thanks for sharing them. I am glad that things are boring with Miss Madeleine, she deserves a few days of rest after her staring role in the video!!
Much Love,
MK
Katherine might know people or Steinberg- I will put some feelers out- This blog is the best idea ever! I feel like I am not only with you everyday, but that I am getting to know your family and friends that I hear about all of the time. Hi to everyone from Becky! It is creating this incredible support network for all of us. Love ~Becky
Post a Comment