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, June 9, 2010

Cardiac fears dispelled... almost... mostly

Wednesday (June 9th) we were able to meet with the cardiologist, who specializes in the electrical system of the heart, to discuss and clear up any confusion we have had around the prior diagnosis of Wolff-Parkinson-White syndrome (WPW).  The conversation started with him explaining the detailed reasoning behind her diagnosis, which still remains as far as he is concerned.  We have no clue where the prior confusion of it being dismissed came from.  Despite that we were very encouraged with the conversation.  Ultimately WPW is not all that harmful or scary when you know you have it.  Since Malia is known to have WPW we will be able to take effective steps (medication) to alleviate the risk of issues over the next 3-10 years.  We also have the prospects of Malia getting ablation surgery, prior to the age of 10, which can completely eliminate WPW if successful.  Also from the conversation we learned that the chances of WPW being passed on genetically are only about 2-3%.  Alison and I will both be tested in the coming months to determine whether either of us have it.  All in all, we left that conversation extremely comforted and pleased that WPW is not as scary as we thought.  Especially in light of her not having had any issues related to her hear since her atrial flutter was resolved when still inside Alison.  There's a good chance she could not experience any issues from it.  Woot!

Hold that thought....  Also while there we asked the doctor if they would be ok with taking her nose tube out (used for feeding and medicine) on the off chance that it would help her eat better.  The doctor agreed to try it out for a few feedings and either leave it out or put it back in.  So we were pretty excited about that opportunity and then called after almost every feeding.  Upon calling in the late afternoon we get the news that she was eating about 70%, but not full feedings.  Not so great - nose tube to go back in most likely... AND...  in the afternoon, just hours after us leaving and having our that great conversation with the cardiologist regarding WPW, we get news that Malia had an episode of Supraventricular tachycardia (SVT) where her heart rate was around 280.  Thankfully the medical staff was able to resolve it fairly quickly with the use of ice packs on Malia's face (Vagal maneuver).  Not having had any heart issues since pre-birth and having just had such a great conversation with the cardiologist this was definitely a challenging irony for us.  Adding to the mental stress was the fact that there was discussion 2 days prior of increasing her heart medicine dose due to her weight gain - which had not taken place until shortly after this episode.

Feeding/growing update

This was a busy week for the baby girl who still remains in the hospital. (see recent 3 posts)
Still not making any breakthroughs on feeding, she started the last week on the same pace as the prior week.  A full bottle feeding would sneak in from time to time but for the most part Malia gets really tired when eating and is exhausted about half way through.  We presume much of this is attributed to the fact that her feedings are thickened and thus harder to swallow.  Slightly discouraging since previously it had seemed like she might have been trending toward improvement.  This still being her key to coming home, we would really love to get back to those full feedings so we can have her home finally.  On Monday (June 7) there was discussion of a feeding tube (aka "G-tube") for the first time as well.  This would allow the food to go directly into the stomach - removing the possibility of irritating the airway and would presumably allow her to come home without taking the full day of bottle feedings.  This would need to be preceded by an upper GI study to examine her digestion and ensure she is a good candidate for the G-tube.  This was tentatively scheduled for Friday, only to be delayed later due to urgent eye surgery (more on that later).