Those short months turned into weeks and then into days. Before we knew it, we were heading for an indefinite stay in Houston. A requirement of the TCH maternal/fetal program and delivery at Texas Children’s is moving to Houston a month before your baby it due. If something happens, they want you close. We were able to stay at a friends apartment for a few weeks and then moved into the Ronald McDonald Holcombe House about 2 weeks before Case was born.
I was induced on a Wednesday morning and Case was here by 4. There were 3 people in the room for me and about 5-8 for Case. The NICU team arrived, and the doctor told me he would try to let me touch Case if he was well enough. You see, when you have a sick baby, and you know about it ahead of time, luxuries like holding your baby or even touching your baby are not promised. I longed for those moments. When would I hold him? When would I get to see those tiny feet, and 10 little fingers? I knew he would be taken quickly, because babies with defects like his can go downhill quickly. I was doing all the work while he was inside me, but outside, with room air it was different. The questions of “How would his heart react? Is it as bad as we thought?” need to be answered.
The NICU team assessed him. He wasn’t crying but wasn’t quiet. He was perfect. I caught a glimpse as they raised him up to put in the cart. After a few minutes it was determined that David and I could hold him for a picture, but then they would have to leave. So I held him. For about 20 seconds, and it was the most wonderful 20 seconds I had ever experienced. I said goodbye to David, kissed Case and was left in the room with the nurse and MD for me.
Dr. Ayres was waiting for Case in the NICU. This was a relief to me. Each and every time we were with her, we had her undivided attention. Although she has hundreds of patients, she has a way of making you feel like you are her only one. So to know that she was with Case, well, it meant a lot.
The evening and night passed and by 7am I was cleared to go see him. He was hooked up to many wires and tubes. His oxygen levels plummeting into the teens overnight. I was able to hold him again, for a few minutes. Before the doctors came, and another echo was ordered and then an X-ray. I went back to my room to get something, and received the call. They can wait no longer. “Come now, we are prepping for surgery.”
The results from the echo showed what we thought during pregnancy. His pulmonary artery so small, fragile, with little blood flow. Too small to function as his aorta. A surgical option was to let him grow and in order to do that they had to make his ASD bigger by literally tearing a bigger hole in between one of his top and bottom chambers to get more oxygenated and deoxygenated blood to mix. The only way to get his oxygen levels up, and the only way to see if his pulmonary valve and artery could function long term. So at 20 hours old, Case went in for surgery. A quick procedure, maybe a total of two hours, but he was intubated now, and I couldn’t hold him, or touch him, or even talk to him. He was critical. But y’all, prayer works, and Jesus is sweet, and within 4 days, this little baby that had stats in the teens was on room air. He was eating, and beginning to gain weight. His doctors, they stood amazed. These things, they are not normal in NICU4, and they are not normal for a heart baby. After two weeks, Case was discharged from the NICU to RMH. His big surgery still up in the air. We needed a hopeful surgeon and for his heart to become stronger.
Throughout our appointments prior to Case’s birth, surgical options were laid out for us. The things that could happen, the things that might happen, and the things we wanted to happen. We wanted his aorta to become his pulmonary, and his pulmonary to become his aorta, but this surgical option had been on the back burner. His doctors didn’t think it was possible. His pulmonary too small, his VSD too large, and we can’t forget about that valve that is restricting blood flow. But 6 weeks later, after more appointments, more echos, more scans, we found that hopeful surgeon that just couldn’t let it go. Dr. Charles Fraser. The only surgeon we could find to take a chance on our boy. The only surgeon to give us hope. He just had to take a look for himself. Because, for babies like Case, the window for certain surgeries closes at 6 weeks, and Fraser just had to try. He wanted to give Case the opportunity for a more normal life and for less future surgeries.
The Lord, He is so good. Showing us, that he would heal Case’s heart, putting the perfect people in our path. Any other surgeon would have said no. But Dr. Fraser, he said “yes, I have to try.”
These mercies, they are awe-inspiring, hope-giving, truth-illuminating and courage-giving mercies that are new every morning, and I’m not sure about you, but I could never live without them.
Click here if you’d like to read my previous posts from CHD awareness week and Case’s story.
[originally posted 2/9/2017]