Kysa

This post is just about pictures!  She had a great day today! ;)

Apneic Spells

Kysa has been having quite a few apneic spells.  Apneic spells means that she quits breathing for a period of time.  Yesterday her spells lasted about 5-7 minutes, today they have gotten longer, 10, 12 & 14 minutes long.  The spells are happening much more frequently too, about every 1-2 hours.  When she gets the spells, her heart rate drops to around 35-50 beats per minute & she stops breathing for a period of time.  Occasionally she may take a breath, but pretty much doesn't breathe.  The Dr.'s have assured us that when these spells take place she isn't in any pain & that it is more of like a deep sleep.  Her color hasn't been the best.....the perfect pink baby skin has turned to more of a grey/blue color. 

Last night & today Mark & I have been giving Kysa the okay to go home & be with the Lord.  We want her to be at peace with no more struggles.  We know in our hearts that her Uncle Brian & all the other Angels up there are going to greet her with so much love.  And we know that she will be watching over us as our Angel in the many days & years to come.

Thanks again to everyone for all your love & support.  Without everyones love & support this journey would be so much harder to bear.  Much love to all!

Strong Lil Girl

Yesterday, Tuesday at 2:20, Mark & I removed the ventilator off of Kysa.  This was by far the toughest decision we have ever ever had to make & pray that we don't ever have to make this decision again.

We'd like to update everyone & let you all know that Kysa is one strong lil girl.  Her heart rate & respiration's have been steady since the ventilator was removed.  Currently her heart rate is 140 & her respiration's are at 40 breaths per minute.  

We know our time with her is limited with her given condition, so we are savoring every moment we get to hold her & be with her. 

Please continue to pray for us....we are going to need a lot of strength in the coming days ahead.  Lots of love to you all!

Care Meeting

Yesterday we had a meeting with Dr. Wilson & his NICU staff along with our parents & priest. 

Dr. Wilson basically just confirmed what we already knew....that there's nothing they can do for Kysa except keep her comfortable.  I can tell you that Kysa isn't in any pain & that she does rest comfortably. 

In the coming days ahead Mark & I will be faced with a very difficult decision....when do we remove the ventilator that is keeping our daughter alive.  We are told that after the ventilator is removed she may last a few minutes, hours, or days, but the likely hood of that happening is very slim. 

Mark & I ask for continued prayers for us.  Please pray that the Lord gives us the wisdom that we need & the strength to make the difficult decisions that lie ahead. 

We cannot thank everyone enough for all of your love & support.  It really helps us face the days ahead!!!  Thank you from the bottom of our hearts!!!

Heavy Heart

With a very heavy heart, we are very sad to report that the genetic test came back yesterday with 100% confirmed case that Kysa Renee has Trisomy 18. 

Because Kysa's heart damage is so severe & Trisomy 18 is another factor we've been told by Dr.'s that there's not much they can do.  If she had just the heart condition we were told that they could do the surgery, but given the fact that she has Trisomy 18, Dr. Najdawi says that there isn't a surgeon out there that would do the surgery for her.  They are going to continue to keep her stable for the next couple of days as we await all the genetic testing to come back. 

Please pray for us in the coming days that the Lord gives us strength & courage. 

Kysa Renee

Our precious lil baby girl was born yesterday morning, August 12, 2012 at 8:07 a.m. weighing in at 2 lbs. 11.7 oz & 14.5 inches long.  She cried right after she was born, which was a good sign.

About 5 last evening Dr. Wilson, the NICU Dr. that's taking care of Kysa came down & told us some very devastating news.  Kysa has congestive heart failure.  The bottom chamber of her heart is grown together & by a physical examination she has signs that point to a chromosomal disorder called Trisomy 18.  Although they haven't diagnosed her for sure with Trisomy 18 they have collected blood & will be sending it to a genetics lab today (Monday) with the results to return within 48 hours.  We won't know the results of the blood test until Wednesday evening. 

At this point even if she doesn't have Trisomy 18, the heart condition that she does have would be a very risky procedure for any surgeon to fix, due to the fact that she is so premature & the fact that her lungs are very under-developed.  Currently she is on a ventilator to help her breathe, because they couldn't get enough oxygen to her with just the nasal cavity. 

Mark & I were able to hold her last evening for the first time & Fr. Hemann came & baptized her. 

Please pray for us that we may continue to have strength in the coming days.
 
If you'd like to read about the possible chromosome disorder here is the link.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002626/

God's Plan

As most of you have probably heard by now, our lil girl is going to be born on Sunday, August 12, 2012 at 8:00 am via c-section at St. Lukes in Sioux City.

Here's a little background on our situation. 

Yesterday (Thursday) Mark & I came to SC for our normal routine 33 week check up with Dr. Hunt.  They did an ultrasound to see the how the growth of our lil girl was coming along.  During that ultrasound they found a buldge in her umbilical cord & above that buldge there was a "pocket".  There was immediate concern that there wasn't enough or possibly no blood flow at all getting through the cord.  After they did some testing they couldn't for sure determine how the good/bad the blood flow was.  Dr. Hunt consulted with a Perinatologist, Dr. Fleming & they both decided that they thought it was in my best interest to be admitted to St. Lukes & monitored for a couple of days with a c-section to take the baby immediately after. 

So that brings you to all up to date.  Currently the heart rate of the baby is staying stable at 140-150 & I am also remaining stable.  They are giving me a steroid shot every 24 hours to strengthen the lungs.  As long as the heart rate of the baby stays the same & doesn't go below 100 or above 200, the plan will remain the same to have the baby via c-section on Sunday at 8 a.m., if however the heart rate drops there will be an immediate c-section performed. 

The baby girl is weighing in at 3 lbs. 5 oz. at 33 weeks, which is about 3 weeks behind.  Dr. Hunt & Fleming feel that our baby will do much better in the outside world than on the inside world.  At the present time they feel that she will be in the NICU @ St. Lukes for approx. 7 weeks, it could be less than that.

Please pray for us that all goes smoothly.  Thanks & we will do our best to keep you all updated via this blog, so be sure to check back frequently!