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.

Wednesday, April 21, 2010

Bye bye chest tubes - hello brain cyst(s)

Today we had a really great time with Malia. Not only did she have her last (of 3) chest tube removed last night but we also got to gaze into her eyes for nearly 10 minutes straight. For a while she was straining to get even one eye open, then after returning from a quick break we got the longest streak yet. It was sooo cool to look at her and to see her looking around. I know she's not exactly seeing everything, but it is just another one of those things that gives us the sense that she is making progress. Alison also had the chance to change her diaper for the first time and lo and behold it was full of what I call "oil spill" (newborn poopy). This is a good thing, as it could be a good indicator that she is taking some of the 1ml of milk that is being given to her every 6 hours now. They also changed her from the crazy life saving (this thing looks like something from Lost in Space) ventilator and gracefully accepted the new less invasive ventilator. There is a chance she could come off the ventilator all together in the next day or so based on how she does with her vitals and oxygen for the next 24hrs.

Now, a couple of other goings on that are triggering emotions and prayer for us.

     Tonight they will be putting in a "central line" to allow them to remove the umbilical tubes and not have to keep giving her IVs.
     The doctor on duty mentioned that there is a possibility that due to the baby's premature state and issues she has gone through that she will not be able to take breast milk. We were definitely planning on her breast feeding, and further have been pumping milk factory amounts of milk since birth. I know, you're thinking I don't get any credit for that... but believe me when I say it is a stretch for me to stand in front of the sink multiple times per day cleaning the parts required to keep this operation up and running.

     We also received word that an ultrasound done on her head/brain revealed about 3 or 4 small cysts. As we were explained, these are most likely caused by periods where she lacked oxygen (either in utero or after birth). This news really caught us off guard as everything has been going so well and we were having such a good visit. They will rescan in a few days to find out if they increase in size, remain the same, or disappear. We are praying for the latter, of course. In the explanation, we were told that cysts in this location are similar to what is seen in babies who have, or eventually develop, cerebral palsy (CP). Not sure if it's just my denial or what, but I let it just go in one ear and out the other not letting it bothering me. Not quite so for Alison, and she is really struggling with that right now. Faith is definitely being challenged right now, but I think a good nights rest and prayers from our friends will restore strength.