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.

Thursday, April 29, 2010

Continuous improvements

The past few days have been more up and down emotionally than I would expect given Malia's physical condition/appearance.

Recent brain ultrasounds have shown official reports from radiology that the cysts still exist but are unchanged.  Though we received what could be perceived as doom and gloom news from the initial scan was not the case with this latest.  Even though radiology reported as they did, the neonatal doctors on this week are in agreement that they don't believe them to be cysts at all.  It's complicated for me to dictate in words on a blog, but the brain pictures they are looking at are not as simple as a single image.  They look at dozens of images which are single perspective slices of each part of the brain.  What the doctor(s) explained to me, and makes sense logically as I looked at the images myself, is that what they see being reported as cysts are more likely just a continuation of the horns of each ventricle.  See, told you it's hard to explain... I've said it before, the complexity of the human body far supersedes the knowledge we as humans have of it.  We continue to trust God with her life, and are eternally grateful for all of the prayers each of you continue to lift up for Malia and our family.

Regarding her heart, the recent EKG was analyzed and assessed by the cardiologists.  The report I received, from one of the nurses, Monday night was that they made a diagnosis.  Based on the EKG they believe Malia has what is called Wolff-Parkinson-White syndrome (WPW).  We are still waiting to meet with the cardiology team to discuss this assessment further, but also received mixed comments from other medical staff as to how definite this diagnosis is.  Though treatable with medication, and possibly later in life with invasive risky surgery, I (as a father) of course want to see this diagnosis just go away.  So yea, I'm praying for that.
Also, regarding her heart, they have stopped giving her Digoxin and are now giving her propranolol.  Apparently this is a much gentler drug and we have seen her typical heart rate change for the better since that change was made.  Malia is still receiving Lovenox, a preventer of clotting, in response to the blood clot seen in her heart.  They were scheduled to echo her heart today to check the status.  Depending on the results, we are still waiting for, she may be taken off of that medication.

On a lighter note - this little girl, with all of these apparent problems on the inside, now appears as normal as any other healthy "33 weeker".  The stability of her vital signs, physical development, food intake, all are indicative of a stable preemie of her age.  All of the various medical staff continue to visit her and comment on how amazed they are to see this little princess looking and doing so well.  It was nearly 3 weeks ago when all of them (myself included) were in similar disbelief of the quasimodo looking littler girl.  Yes, I can't lie, though the person of Malia equaled nothing but beauty to me she was not looking good back then.  Of course I love her no matter what, but the truth is Malia is now flaunting her full fledged NICU beauty queen status.  In light of her progress with breast milk intake, they are in the process of a triall period with her off of supplemental IV foods.  Anyone remember a while back when we asked for prayer because they were talking about not being able to use breast milk?  Thanks to our friends for praying and thank God for providing, simply amazing.  Also, over the past 4 days they have been graduating Malia to simpler beds almost daily.  Late last night she was moved into an open air "crib" which means she is controlling her body temperature on her own and is resilient to external noise/light.  Lastly, she is now off of all pain medication and seems to be suffering little to none withdrawal of the narcotic she was on (fentanyl).