Baby Jay's Heart

When JJ was born he initially looked great and he even cried like he should. The nurse started wiping him off a bit and he stayed a little blue not starting to turn pink like they are supposed to. The pediatrician wanted to check him out just in case so they took him over to the warmer and started him on a little bit of oxygen. No matter how much oxygen they gave him, his 02 wouldn't stay above around 70%. They just weren't sure what was wrong, usually a little oxygen boost helps a heart healthy baby get to where they need to be pretty fast. He was sent to the NICU for further testing.

In the NICU the doctors tried everything they could. His lungs looked good, his heart sounded good, etc.  They decided to do an echocardiogram which was read, in real time, by the team up at Cleveland Clinic main. This is what revealed his Congenital Heart Defect, TAPVR.

Total Anomalous Pulmonary Venous Return is a heart defect in which "the pulmonary veins (PV), which carry oxygen-enriched (red) blood from the lungs to the heart for pumping to the body, are "anomalous," or abnormal with respect to how they return to the heart".

"There are various forms of this defect, but all of them involve the red blood from the lungs being carried by the pulmonary veins back to the right side of the heart rather than to the left atrium (LA), as in a normal heart. This means that all the red blood is mixed with the oxygen poor venous (blue) blood in the right atrium...

In the most common form of this defect, the pulmonary veins (PV) are connected by a vessel to the superior vena cava (SVC), which carries blue (oxygen-depleted) blood back to the heart. This is known as the supracardiac type. "

So little guy had to have open heart surgery within the first 24 hours. 

His surgery went well, everything was repaired. His surgeon said he should not need any further surgeries, praise the Lord!

He stayed in PICU for about 8 days, hardly any setbacks aside from some lingering swelling, which is common. He was intubated for about 3 days,  then was on high flow oxygen for about 5 more. Went to the step down unit to work on feeding. The second day there he pulled his ng tube out of his nose and did so well with eating that eating that he didn't need it put back in. We were discharged from the hospital on day 13. 

It was a long 13 days. Staying at Ronald McDonald House made it way easier for us to be there with him the whole time. I had to pump milk for him every 2-3 hours around the clock. Honestly, it was the best outcome given our initial situation. The team of doctors and nurses in the PICU are in a league of their own, I do not have one bad thing to say about them. They made sure to take the time to thoroughly explain everything from his surgery to medications to oxygen, etc. 

He went home eating fortified breastmilk from a bottle for the first week and a half or so. Once he went to his follow up cardiac appointment, we started breastfeeding directly for half of his feedings. Then about a week later we stopped bottles and switched entirely to breastfeeding.