Jaylie - Day 6

Sorry for the delay in posting, as you can understand our lives are quite busy, and with the holidays the draws for our attention have increased. With that said, Jaylie is doing well. Jaylie is still hooked up to lots of IV's, tubes and the oscillating ventilator but the Dr's are slowly moving the level of support the oscillating ventilator provides down. The way the Dr's decide as to how much support to provide Jaylie is based upon tests performed every couple of hours. They test her oxygenation levels, gases and lots of other 'stuff'. Based upon the test results, the levels of support, nutrition, medication, ect are adjusted. They run reevaluation tests every 4-8hrs depending on the condition they are monitoring and the severity of the condition. With that said, the Dr's are shooting for being able to take Jaylie off the oscillator hopefully within the next couple of days, yay!.

One new development is that of a diagnosis of pulmonary hypertension (high blood pressure in the heart and lungs) for Jaylie. What pulmonary hypertension is is the restriction of blood vessels in Jaylie’s lungs which affects oxygenation of Jaylie’s body and the amount of effort Jaylie’s heart has to put out to circulate blood. With pulmonary hypertension Jaylie’s little heart has to push really hard to get blood through the blood vessels in her lungs and with the restriction of the vessels, the lungs are not able to oxygenate the blood very well which means the heart has to work even harder to cycle through all the blood in the body more often to get oxygen to everything – as you can see, these events can cause some serious strain on the heart which can lead to cardiac arrest. The good thing is, we are at the best hospital in the state to deal with these types of conditions and because of the Dr’s and nurses religious dedication to monitoring and providing excellent care, they found this condition early and have started to treat it. The Dr’s have started treatment with a two pronged approach 1) being pumping Nitric Oxide gas directly into Jaylie’s lungs to loosen up the blood vessels 2) giving Jaylie some medication to reduce the high blood pressure in Jaylie’s heart. Jaylie is taking well to the treatment so hopefully we will be through this bump (bump being pulmonary hypertension) soon.

If you recall, I mentioned there was some concern around bleeding in Jaylie's brain on the left side and a swollen left ventricle - well, the Dr's and nurses have performed several more cranial ultrasounds, the results showing no change at all - which means, the concerns the Dr's had (notice I said had) are slowly dissipating (regarding the bleeding in the brain). The Dr's have said the bleeding is draining and there is a possibility the measurements and bleeding they saw was not due to the trauma Jaylie suffered last Friday (the set back that has put Jaylie in her current position) but that the bleeding and swelling of the left ventricle could have been there from birth being that the first cranial ultrasound they took was the Jaylie's first cranial ultrasound period. This is very good news! A level 4 cranial hemorrhage is very bad uber scary stuff!

Overall Jaylie is doing well. Thank you SO much for your prayer and support!

On a side note, I have to say, the level of support you all have provide Kristina and I is absolutely amazing! Honestly, I'm sure we would not be in the place we are now without you all – we could not and cannot do this without your prayer and support. You all are AMAZING! Thank you SO much!

Nathan, Kristina & Jaylie

PS: If you are interested in knowing how old Jaylie is exactly (it updates every second – yes I am a nerd…), I’ve added an age counter to http://www.jeffreystop.com/jaylie

Here are a couple of pictures to put Jaylie’s size into perspective (the bluish tint is due to the lights they have her under to treat jaundice):