How Are We Doing?

The most common question over the past 2 days has been, "How are you all doing?".  The short answer is easy...TIRED!  Though I guess if Kyleigh had come home with us right away we would still be tired :).  The real answer is that we are doing alright.  We seem to have established a routine and broke the day into day and evening shifts at the hospital.  We are attempting to create some regularity in our days so that Kevin can adjust as much as possible.  In all honesty, Kevin is probably having the most difficulty.  Many of you have offered to help take care of him and Bridgette and I are very grateful for all of the offers, but the problem isn't getting someone to watch Kevin, it's being able to be with him as much as he would like.  Splitting the day into 2 shifts has helped a great deal but that still leaves only brief times during each day that Kevin is with BOTH Mommy and Daddy together.  In addition, he has started asking when Kyleigh can come to "Kevin's House".  It is heart breaking to hear and he's just too young to understand.  Fortunately he understands what doctors and nurses do so we remind him that the doctors and nurses are helping Kyleigh grow and get strong enough to come home.  So far he accepts this reasoning.  I wonder if he knows what he's in for once she finally does come home :)

As for the Princess, there have been some positive developments!  She is up to 50 cc's each feeding now with no digestive complications.  She is taking a little bit by mouth each feeding and she had her best feeding today where she drank 25 cc's by mouth!  This is very good progress.  Yesterday, the doctors started her on Zantac because they think she has acid reflux.  They felt this may be contributing to her unwillingness to eat by mouth.  They also started her on Lasix (a water pill) to remove any excess fluid in her lungs (and anywhere else).  Their reasoning was that if she does have some fluid build up, it may be harder for her to maintain her breath support while eating by mouth.  Both of these medications seem to be helping.  At the very least, she is much less "puffy" :).  By the way, we have known since we first learned of the heart defects that she would be placed on some medication for her heart.  Lasix is one of them and my guess s there will be others until her heart is repaired.

The best news of all is that the doctors for the first time today started talking about GOING HOME!!  They didn't say when, but they are at least discussing it.  The neo-natologist will talk to the cardiologist tomorrow to discuss his theory that the poor "by mouth" feeding may be related to the heart issues.  I personally do not know how they can be related but if it means Kyleigh coming home sooner than later, I am certainly on board to learn why and how!!  If the cardiologist agrees then we will start talking about a plan for coming home!!

We can not thank you all enough for all the love, support, and prayers you have given our family.  It has truly been overwhelming and we are reminded each day how blessed we are to have you all in our lives.  I will update you again as soon as I know more.

Jim

P.S.

Here is a recent picture for those not on Facebook: