2 days after surgery--open chest. They leave the chest open to allow for swelling and pressure changes. Definitely hard to see your baby on the bed looking at you. And, as you all can tell, he is always WIDE eyed and alert!!!
The next day, August 16th.....CHEST CLOSED! They used A LOT of anesthesia for chest closure--so, he actually slept with his eyes closed.
Another wide eyed view of the boy---DRESSING OFF!
Whatcha think about the zipper??
Tube free---EXTUBATED on August 21, 2012. YAY!!
Mommy won the fight with daddy to hold first. First time in mommy's arms in over 2 weeks. A long time coming!!
Wow--"I can breath on my own." Just a little high flow nasal cannula.
This didn't last long. Will's respiratory rate steadily increased throughout the night. And, then he ended up going on non-invasive BIPAP support. Hard to see that your baby is still working to breathe after 2 open heart surgeries. But, the optimist in you says, "TIME, TIME, TIME." Right before surgery, William experienced a hemorrhage in the right upper lobe of his lungs. So, his work of breathing was going to be more than the average cardiac kiddo. The hemorrhage was a result of too much edema in his lungs. With knowing about the hemorrhage and the lung condition pre-operatively a need for extra support was not too unexpected.
BIPAP....and, his eyes remain wide open! BIPAP and the mask are not his friends! He absolutely hated the mask on his face. Can you blame him? Claustrophobia at the worst, if you ask me!!
4 hour BIPAP break. Originally, he was doing 4 hours on BIPAP and 4 hours off BIPAP. Then, it went to 6 hours on with 3 hours off. Then, on all day except 3 breaks of 2 hours each....CUDDLE TIME ONLY ALLOWED DURING THOSE BREAKS!! This has been really hard on the mom and dad. It was over a week before surgery when he was intubated for distress and then another 8 days after when he was extubated. But, once again, we had to remind ourselves....TIME, TIME, TIME!
With all the great things that have happened for William since surgery, there was bound to be a few bumps in the road. Bipap and needing it for a few days (or 6) was a bump in the road. Then, having the cardiac surgeon walk in with a somber face to give you the echo report on William. His post-operative echo of his heart was completed on Friday, and there were some concerns! YUCK! His echo showed that the opening of the confluence and left atrium is wide open as it should be. But, the pulmonary veins are showing some signs of restriction. So, another cardiac cath is likely on the agenda soon. Hard news to take. His defect is rare and complications from it are even more rare. As, Chris has said many times....William is a RARE BIRD!!
After some time to process the news, the mom and dad needed some ALONE time with the boy. So, here are the pics from our moments.
Mommy's next time holding a boy---Daddy went first though. Well deserved holding time for Daddy, 3 weeks since the last cuddle time for daddy and son.
GIGGLES!! Best thing for the mommy and daddy to see!!!
Pure love!!
Watching the daddy despite being in mommy's arms.
And, then we got rid of BIPAP completely. William would fight the whole time he was on BIPAP that it might have been counterproductive. So, they let him have more freedom! And, William was ready to roll with it. Check out the little boy in the big swing!! Great to see him do baby things...everyone would walk by and Will would pop his eyes open and follow them down the hall until they were out of view. Funny taking time to explain to staff that hasn't met William that is not an exceptional newborn with his alertness but rather a 3 1/2 month old DOING BABY THINGS!!!
Cuddle time with mommy this morning. See the skinny baby--hard to see how SKINNY he is. Now that he is edema free, he looks SKINNY! The nurses all love William so much. See the KU basketball on his cheek. His nurse, Garrett, who loves MU sacrificed for Will's sake. We like to think he came across from the dark side to the light!!! But, Will is showing his Jayhawk spirit!! And, Baby Jay even resides with Will in the warmer!!
So, here is an updated pic from just a few minutes ago. He was intubated today for his CT scan of his chest. The cardiologists, cardiac surgeon, and radiologists decided that a CT angiogram would give the best images with the least intervention. And, as we all remember...cardiac caths are not easy for William. So....the waiting game continues.
Chris and I will have a meeting with Will's cardiologist and the cardiac surgeon tomorrow afternoon to discuss all of the findings.
We love the Cunninghams! you are in are thoughts and prayers!
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