Lots of good news to report! The Omegaven therapy is going very good, even though Nora’s Bilirubin went up to 10.7 this week from 8.9 last week (which is expected while her body is flushing out the jaundice) her color is continuing to pinken up and get less yellow by the day. The whites of her eyes had been very yellow, especially in the corners, and they are also whitening up. Now her beautiful blue eyes are looking even more spectacular!
We had a very positive and encouraging conversation with Dr. Puder a few nights ago about decreasing Nora’s TPN and her overall progress. Since she’s taking a good amount of calories orally from the Elecare we should be able to start decreasing the amount of hours she’s hooked up one hour at a time. The ultimate goal is to get her down from 24 hours a day on TPN to only 12 hours at night. Since the Omegaven is only for 12 hours at night that means that we could have a IV line free girl for 12 hours during the day!!! We had our monthly Shands visit yesterday and discussed this with them too and they agreed that we can start tapering off TPN hours soon. They thought that overall Nora is doing very well and were impressed with the amount of formula that she is able to handle.
With both the Shands doctors and Dr. Puder we also discussed introducing some breast milk soon and they both think it’s a good idea. I stopped pumping a while back but we have a pretty good stock pile of mommy’s milk in the deep freeze waiting for her.
Lastly, a report from the poop inspector! Nora’s poop had still been pretty loose ever since the last round of anti-biotics from her hospital stay at the beginning of the month. It had slowly been getting thicker and then yesterday she had a picture perfect BM, just as thick as any other baby on formula! For those of you who are new to reading about Nora, her stool is a very important factor in determining how well her bowels are working and absorbing nutrients. The looser the poop, the less she is absorbing. So you can see why we do a happy dance when we see good thick stool. 🙂
Here’s our little sweetie chillin on the couch and sitting up like a big girl.
awesome awesome awesome. iv-line free… too awesome for words. when emily and i finally make it out for a visit we sure would like to meet her.
Sweet news. We check your site everyday and are happy to hear progress and picture perfect poops. My wife and I both huddle over each one of Connor’s. Attaway on the GOOGLE front too! Nice coincidence that you know all about that…. Eventually Omegaven will spread, but we all have this obligation now to help move it. You guys are helping to lead the charge while taking care of a special child which is awesome. Unite!
That is wonderful news!! Nora being IV free all day would be awesome!!
Hi guys — great news and cute cute picture of Nora! Bring her up to the NICU here at TMH sometime so we can say hi!
What a treat for darling Nora to be “line-free” for 12 hours a day! (And how nice for mommy and daddy, too!) I remember the relief we felt when our grandson, Collin, was able to decrease his dependence on tpn and that 12 hour window seemed like a miracle! Wishing you continued success with the Omegaven…
Collin Matthew’s Family