Jaylie had a setback yesterday (11-20-2009) which gave us all a scare and has reminded us our journey to healthy stability is still far from complete. Yesterday Kristina was getting ready to leave the hospital and had spent a majority of the day with Jaylie and the nurses – everything was going well, and the nurses expressed they were really surprised to see how well Jaylie was doing. There was one thing they noticed, Jaylie was having to exert a slight amount of energy to breath, not enough to be concerning, but enough to take away from her energy supply. The Dr’s and nurses want all of Jaylie’s energy to be spend growing and maturing so they decided to help Jaylie with the slight labored breathing. This decision was made shortly after Kristina and I left to go and get some food. As the Dr’s started the procedure to assist with Jaylie’s breathing, they put a tube down Jaylie’s throat, at that moment a large amount of blood came back up – this is really not good. The Dr’s found there was a hemorrhage of Jaylie’s trachea which caused a large amount of bleeding.
When Jaylie started to bleed from the tube insertion, this sent her vital signs plummeting, caused problems with oxygenation and other issues. The Dr’s and nurses had to work feverishly to order to stabilize Jaylie and keep her stable. After the Dr’s stabilized Jaylie, they ordered a complete set of tests including blood work, head ultrasound, chest x-ray and heart echo.
Though all the test results have not come back yet, there were a couple test results that did. Based upon the test results the Dr’s saw, they were able to make a couple of conclusions:
1) Jaylie is experiencing a condition all babies experience called “Patent ductus arteriosus” which typically dissipates with full term maturity (you can read about patent ductus arteriosus HERE). Because Jaylie was born so prematurely, this condition would be expected because she has not had time to develop completely. Patent ductus arteriosus has cause Jaylie to bleed a lot in her lung cavity. To address this problem, the Dr’s have put her on an oscillator which fills her lungs with air and provides internal pressure on the dustus arteriosus to help stop the bleeding. The Dr’s have also put Jaylie on a medication to help stop the bleeding.
2) The Dr’s saw a little bit of bleeding on the left side of Jaylie’s brain, and a oh so light inflammation of the left ventricle vain. These two conditions combined are not good, but the Dr’s is confident Jaylie will most-likely resolve this bleeding on her own. Bleeding on the brain is typical and is only problematic if the bleeding pools up and does not drain or if there is wide spread bleeding (across both sides and throughout the different regions).
Because of the amount of blood loss Jaylie suffered, they had to give her a blood transfusion.
So what does this all mean? Dr Hinson (he’s the best Dr! He is the Dr we first saw when Kristina and I did our consultation at Swedish) advised he was concerned not overly concerned with all these events – yes they are critical events that require 24/7 monitoring , skilled attention and care but he is hopefully and confident Jaylie should be able to pull through these bumps and setbacks.
What can we do? We can pray for Jaylie. The Dr’s have advised this is the road ahead of us, two steps forward one step back, good days and bad days. We can accept the good and the bad, be thankful for was we have been given and not focus on what has been lost but on what is yet to come. Jaylie needs our prayer and support to pull through all this. We can pray for Jaylie growth and development. We can pray for peace, courage, strength and good health to be granted to Jaylie. We can pray Jaylie continues to be granted the small daily miracles God has granter her and us thus far. We can also thank and praise God for all He has done up to this point. Our God is a good and faithful God!
As always, Kristina, Jaylie and I thank you SO much from the bottom of our hearts for all the prayer, support, encouragement and love you all have shown us! We couldn’t do it without you!
Nathan, Kristina & Jaylie
Jaylie's picture album