Friday, January 22, 2010

Jaylie - Day 66 - week 37

Jaylie is doing better though still not completely well. The Dr's today explained they were not able to find anything negative in the tests, the tests completed are showing normal results. The upper and lower contrast GI tests confirmed the flow through Jaylie's bowel is unblocked with no perforations (both good things).

Jaylie's swelling has come down a bit but not completely. Jaylie's lower half is still swollen. The Dr's have advised they were going to do a colon biopsy by Monday to test for Hirschsprung's disease. Hirschsprung's disease is a disease that affects the bowels ability to pass substance due to the lack of nerve development. The Dr's don't believe Jaylie has Hirschsprung's disease but would like to rule it out.

The Dr's explained there may be a couple of things going on with Jaylie:

1) Premature displacement (aka, her colon is just premature)
2) Feeding sensitivity (problem with processing large amounts of breast milk or breast milk in general).
3) Some sort of sickness or disease like Hirschsprung's
4) Unknown

What the Dr's are doing is eliminating all the possibilities, one at a time, by starting with the conditions that are most life threatening to Jaylie. So far the Dr's have not been able to find any major conditions that would explain why Jaylie is having a tough time with feeds. If you recall, early on when we talked with the Dr's about Jaylie and what to expect, the Dr's advised due to the IUGR (growth restriction) there was a high possibility there would be problems with Jaylie gut due to the blood flow being restricted from the gut area most-likely affecting the gut development. The Dr's and nurses have told us, before we reached this point, a lot of premature babies have problems with feeds which can last for long periods of times, sometimes months. The Dr's reiterated today we may just be at a point with Jaylie where we have to work to get her fed. The Dr's assured us they are working non stop to identify what's going on with Jaylie, once they rule out all the major diseases or issues which may be causing Jaylie's swelling they will start focusing on a feeding strategy.

I know what I have explained sounds a bit nebulous (vague and inconclusive) but it all makes complete since to me and I feel completely confident in what the Dr's are doing, why they are doing it and how they are going about dealing with these issues - all-the-while keeping the main goal in mind, which is helping Jaylie to grow, develop and mature. I am very thankful for the set of Dr's God has put over Jayile! Though not perfect, they have been amazing and used to help Jaylie achieve amazing results :).

This week has been tough on everyone (the Dr's & nurses, friends & family, Kristina, myself & Jaylie). We were advised earlier on there would be lots of ups and downs, but most of our 2+month stay so far has been some what positive. This week is the first roller coaster week we've had since the first weeks Jaylie was born. This week has brought back old unpleasant memories. This week reminds us we are still in the Neonatal Intensive Care Unit for a reason, Jaylie is still very fragile and has a lot of growing and maturing to do.

As always, thank you SO much for all your prayer and support! We really appreciate it!

Nathan, Kristina & Jaylie

Here's a pic from today. Thanks to the Solamito's for the uber cute hat!

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