Almost 7 weeks in one? How will I ....

ever accomplish that?! First off, I truly admire all the CDH mothers'( and any special needs moms) blogs I have read. Faithfully blogging from the beginning of their journey....heroes in my book! I think it is great. Anyway, as a mother of a CDH baby, I know that when you read other blogs you want details. I am going to try to wrap it up into a few posts then catch up to the current day, whenever that may be. :) Also to my church family and friends....I thought this is a wonderful way for you all to know what is going on and to get updates whenever you feel the need to pop in and check on the little man that you have been praying for ..... which I am so grateful for.....

So here it is in a nutshell...6 weeks packed in a QUICK post :

I never had a sonogram, so this was all a shock. Born on 1/22/09, home birth, straight to Wolfsons hospital, diagnosed with CDH which I had never heard of. Immediately on vent and ECMO as soon as possible. I want to say a couple hours after birth. Surgery day 1/30/09 finding out he didn't have a diaphragm, intestines, part of stomach, spleen, ( which bled too much while trying to be pulled out so they had to take it out ) and tip of liver were all in chest cavity pushing his heart into the right lung and of course covering the left lung, which was there but very small. The surgeon also found an extra spleen which was awesome since he had one taken out! Awful hypertension. Good kidney and heart function, praise God! Thought we snuck by the bleeding out with being on ECMO during surgery, but a few days later it was bad. Lasted few days but with chest tubes and way too many transfusions, that part was finally over. FIRST time off ECMO on 2/6/09, back on within 36 hrs then officially off on 2/13/09. Total of almost 3 weeks. Up and down on vent rates, nitric oxide for few days, weeks of weaning off ( weaned by 3/7/09 ) with methadone and ativan, many many fits then stats dropping, tests after tests, poke after poke, high blood pressure, failed attempt trying CPAP on 2/26 and then reintubated, held you for the first time a five weeks old, hypertension resolved ( God healed ) on 3/3/09, held 2 more times but it is more of a stress with the vent, good MRI results on brain, and so much more that I'm leaving out. During all this my heart feeling like it was ripped out and being in a total state of shock, but remaining to stand in awe of our Father as he guides me through.....wow.


( Im reading this a year later and I sounded a bit crazy. I wasnt trying to make light of it, just trying to share the medical issues he had/has and obviously still in a bit of shock. whoa, but there it is =0)