A few days worth of updates

I can tell by the increase in number of texts and phone calls that you are all craving an update on our little princess :).  Well it has been an eventful few days with lots of ups and downs but thankfully mostly good things!  So here is a run down of what has been happening:

Kyleigh wasn't feeding by mouth so was getting about 5-10 ml's of breast milk through the NG-Tube.  Her residuals were a little high, meaning she was having difficulty tolerating the feedings and wasn't digesting all that she was eating.  In addition she was not pooping.  The Neonatologist wanted to try continuous feedings in hopes that smaller amounts of food over a longer period of time, would allow her to digest better (and poop).  This only lasted for about 2 hours.  On Sunday night (early Monday morning) the doctors decided to stop the continuous feeding and put in an Umbilical Venous Catheter (UVC-basically an IV in the belly button) of H-VAL or TPN (liquid nutrition for all my non-medical friends).  This would ensure that she gets all the nutrition she needs while we keep trying to get her to digest and eat.  The UVC ended up being a great move because shortly after, Kyleigh was alert more often and since then she has been tolerating her feedings very well.  She has gone from only 5-10 ml's to 30 ml's today and has had NO residuals!! She has also had poop in almost every diaper (funny how we celebrate something like this).  While the increase in volume she is able to tolerate is a GREAT thing, what's even better is that she was able to eat by mouth today!!  Kyleigh took 15 of 30 ml's at one feeding, 20 of 30 ml's at another, and 8 of 30 ml's at her last feeding before we came home.  This is not consistent but it is definitely worth celebrating as eating by mouth will buy her ticket out of the NICU.

Another concern has of course been Kyleigh's heart defects.  To review, she has 4 defects.  2 openings in external "communications" and 1 hole between the atrium and 1 hole between the ventricles.  She had a repeat echo-cardiogram yesterday and had more good news.  1 of the external issues has resolved itself!!  The cardiologist expected this so it was not a surprise but very welcomed news.  The other 3 issues have remained the same and the doctor confirmed that Kyleigh will for sure need surgery to repair them.  The plan is to hold off as long as Kyleigh's heart and lungs will allow it.  These defects are not life threatening but it is likely that by 2 months old they will become problematic and the surgery will be necessary.  We will cross that bridge when we come to it.  For now, we will thank God for the improvement, however small, and continue to pray for progress.

I have saved the best for last.  The chromosomal test came back NORMAL!!!!  This is GREAT news and a huge relief.  While we are very happy about the news, we are not completely out of the woods yet.  The geneticist and NICU doctors are running 1 more test.  It is a DNA Genome Array.  Basically the first test looked to see if Kyleigh's chromosomes paired up correctly...which they did.  This test will look super microscopically at each chromosome to see what, if any, misalignment abnormalities there are.  We know this test will NOT come back perfectly normal because we already know there is a genetic defect of some sort that caused the heart problems and recessed chin and these will show up on this test.  What we HOPE and PRAY will happen is that we see these are all separate and random issues and not part of a picture (syndrome) of some sort.  The genetecist told us that there is always a chance they will find something but most of the time he does this test he finds nothing.  So we will continue to pray for that.

I think that is everything!  It has been the longest week of our lives!  Bridgette and I (and Kevin) can not thank all of you enough for your thoughts, prayers, emails, texts, phone calls, etc.  The love and support has been overwhelming.  We are truly blessed to have all of you in our lives and we can't wait to tell Kyleigh what an adventure she took us on!!

I have been told by some that while general prayers are always great, praying for something specific is better.  So for those of you that are praying, here is what Kyleigh needs to do to be able to come home.  She needs to increase and tolerate the volume of her feedings.  She also needs to continue to improve in her ability to eat by mouth.  Lastly, she needs to be able to eat enough (hopefully by mouth) to be completely off her IV fluids.

Thank you all again.

Love,
Jim, Bridgette, Kevin, and Little Kyleigh