Dusting off some pictures.

I was going through pictures this past weekend looking for pictures of Ray for his birthday post. I found some pictures from Jaxsons horrible 4 month hospital stay, right around the time he had his open heart surgery. They were pics that got put away, ones that didn't go into his baby book. Not that they are much different, it was just a reminder of that scary time. And next month will be the 4 year anniversary of when he was first admitted for that looong stay. It seems so long ago but yet so vivid. I still don't know how our family survived!
I'll give a short history on this stay. So much happened but I'll try to be brief, since I didn't have a blog back then, you can't go look it up. I wished I did have a blog then. I do believe its important to remember even the bad stuff. Like it would be nice to be able to go back and remember this was the day a new line went in. Or this was the day he was reintubated for the 4th time.
Jax went into the hospital on April 17th, 2006. He was 4 months old. He was admitted for respiratory distress, something he'd been in for every month since his birth. AV canal defect and his huge PDA was making it impossible for him to keep his sats up. His left lung never stayed inflated because his heart was taking up his whole left chest. I can't believe his cardiologist told me at birth that they wait to fix this defect until they get bigger. But most kids I know with this defect never gain weight and struggle until its fixed. After being on the floor for 4 days, on night he really went downhill and was sent to PICU. They put him on c-pap but quickly had to intubate him. That was the beginning of hell. He initially had pneumonia. But that of course caused heart failure. So picc lines and art lines went in, and then of course the infections started. After one month in the hospital he still couldn't stay off the vent. He was finally infection free so we scheduled his open heart. But the night before surgery, he spiked a temp. I remember crying and thinking he was never going to be well enough for surgery. They decided to take him to the cath lab, thats when they saw that his PDA was huge. The doctor tried to close it, but it was unsuccessful. After another two weeks of not being able to extubate him, they decided to do surgery to close the PDA. That was his first heart surgery. It was also unsuccessful at keeping him off the vent. They would extubate him and he would last maybe 24 hours. We were in our 3rd month in PICU when he had his brain injury. The brain injury was from severe hypoglycemia and hyperpyrexia (critically high temps) He had a fever from a drug reaction, and they weren't feeding him because he had a chylothorax (fatty fluid in the lung) and he was on blood thinners and was oozing from all of his IV sites. So they stopped them all. When I got in that morning he had no nutrition, IV or otherwise going into his body, and his heart was racing and his temp was high. As soon as I was about to ask about no fluids, the lab called. His glucose was 17! But they believe that it bottomed out to 0 if you think of the time it takes to draw the lab, send it, and the lab to read it and call. So they pulled glucose of the crash cart. I was fuming, little did I know what it did to the brain. Then they let his temp get to 108. Seriously, this is with a nurse by his bed ALL OF THE TIME! Ok, I'll keep going because I could go on forever about the brain injury. Anyway, we demanded a care conference and for the head cardiothoracic surgeon to be there. They couldn't do his open heart for at least two weeks to try and let the brain heal a little. But they had to stop the chylothorax. So he had his second heart surgery to try and stop that. So now he has the bra-line scars on both sides. But that indeed dried up the chylothorax and they were able to pull the chest tube and finally get him extubated. But it was touch and go. They kept him on c-pap 24 hours a day with the exception of 2 hours when he had CPT. And there were multiple times that they wanted to intubate him. We were able to keep him extubated and on c-pap for 9 days until he had his open heart.
This first pic is him on the c-pap. He had gotten so fat from continuous feeds and zero movement for 3 months. Plus all the fluid he retained with his sick heart, and his huge belly from constant air. These pics are dark because its a disposable camera. We didn't have our digital back then. It was a bingo gift one week (the hospital played bingo every Wednesday and gave the whole hospital a gift. After getting tons of stuffed animals they had to be creative with his gifts)It had a Christmas logo on the bottom. Thats why the pics are uneven, I cut off the bottom.

This was the day of his surgery. They took his c-pap off so we could all hold him before he went in. This is my mom holding him.

The first few days after surgery.

His million pumps. 18 to be exact. The back and front were filled.


Slowly losing a little puffiness in his face.

He stayed on the vent for 10 days post op, and finally was able to be extubated. He was in the hospital for 120 days, all but 14 days were spent on the ventilator. He had 4 major surgeries, and countless procedures. I can't remember how many different picc and art lines he had. Or how many CT's and MRI's he had. Sometimes its good to look back at these times and just thank God for your miracle baby!