We created this blog to help us document the story of Malia starting at 29 weeks in utero. There have been and continue to be struggles for Malia and for us. It is evident to us, as you will see, that the power of prayer is mighty and God does love us and hear our prayers. We welcome and invite you to follow along with us. Though lengthy, start from the bottom to get the entire story so far.

Monday, May 31, 2010

Drink baby, drink!

Malia drank her entire feeding yesterday for me and today for Alison (58ml).  The milk is still thickened to "nectar" thick to avoid her chocking or having the fluid go into the lungs.  Also, she has to be positioned on her left side while feeding to also help ensure it goes down well (due to what Alison explained in previous post, there is a "void" on that right side).  On my visit yesterday I also had Alison's Dad (Grampa Tree) with me and he got to hold Malia for the first time.  Also worth noting, though no surprise to us because we've recognized it for a while, is that Malia passed her hearing test last week.
The significant areas of concern still are her brain development, heart diagnosis, and eye sight.  There was an eye exam last week to check for any change in status from the previous exam.  Previously she was diagnosed with stage 1 retinopothy, and in this recent exam it was reported as stage 2 - so slightly worse.  Regarding the heart diagnosis we have been slightly confused in the recent past.  The earlier diagnosis of Wolff-Parkinson-White syndrome, which we had heard was dropped, has been sneaking into conversation recently.  We noticed that we would be around doctors, specialists, or nurses that would continue to be making reference to her "cardiac problems" or to the "WPW".  At first we disregarded the initial comments as ignorance but as we continued to hear it we realized there might be something behind the scenes that didn't quite match what we understood.  Alison spoke with one of the neonatologists last week and found that the Wolff-Parkinson-White syndrome diagnosis does indeed still stand as far as they are concerned.  We are going to follow up and hopefully get some time with both the cardiologist and neonatologist(s) to discuss in more detail so we can understand what is what, and why.
It's really great to have Tree (Al's dad) here this week.  I think we're supposed to be helping him right now, but this guy is really helping us - what a great man of faith.  We also still feel very much prayed for and continue to be blessed with the support of our close friends. By the grace of God, through these many things, we continue to have the strength and press on toward the goal.