I held Jack for just a few minutes. Just enough time for pictures to be taken. Just enough time to memorize every tiny detail… his blue eyes, his blondish hair, his big hands with long fingers, his huge feet with the Veronie turtle toe, the softness of his cheek, his cute button nose and pretty round mouth, and that new baby smell.
Then it was time for him to go. He was taken to his own room where they would do an echocardiogram. Kevin went with him. All my doctors and nurses were gone, all Jack’s doctors and nurses were gone, Kevin was gone, Jack was gone. And now suddenly my room was very quiet and still. The busy bees had finished their work, the excitement of a new birth had been whisked away with the baby, and I was very alone. And then, in came our birthday dinner! Two steak dinners with mashed potatoes and green beans, salad and soup, a sparkling juice and piece of pie. So, I ate myself two whole steak dinners, including pie!
Side bar… Kevin and I were just talking the other day about these moments and I said something about the steak dinner and pie, but apparently, he never knew there was pie. “There was pie?! What do you mean pie?! TWO pieces of pie?!!” He’s not letting it go…
So, Jack had his echo, and he did great, once he was settled Kevin came back to me and they moved us to my postpartum room. Just as we were meeting my new nurse and getting settled in Kevin got a call that they were going to go ahead and take Jack back for a valvuloplasty and we could come see him before. The valvuloplasty is the same procedure he had in utero but much less risky. Instead of taking a needle through his chest directly into his heart they would go through a major vein in his neck. My nurse brought in a wheelchair and showed us the best path over to Jack. He was in a different building, so it was quite a trek to get across to him. I met Jack’s nurse, Meghan (I loved that), and she updated me on the plans. Then she asked if I wanted to hold him. Of course! Again, I get to hold him again! I did feel bad for Kevin because he hadn’t yet been able to hold his son. But not bad enough to give up my time, I didn’t know when the next time I’d get to hold him was, I took every second I could get. So, I held my sweet boy, and I prayed over him. Meghan even helped me do a skin to skin of sorts. 3:46 pm, it was about 20 minutes later, and they came to take him to cath lab for his procedure. We went back to my room to rest and wait. I pumped. I hated it. It felt so wrong, so foreign, but I had to do it for Jack. We updated all our family and close friends; I called my mom. We waited. And then we got the call that Jack was done and back in his room. We went right away to see him. 8:26 pm I got to see my baby again, but this time I couldn’t hold him, this time he looked much different.
We spoke with the doctor, the valvuloplasty went fine but unfortunately the valve was just too thick and they could not open it with the balloon. Jack was stable and mostly sedated to keep him comfortable until the next steps. They would present his case in committee to make a decision about where to go from here. Committee is where all of the doctors in the cardiac department meet and go over the big cases to ensure the best path. There were a couple of different paths at this point, but it was going to be open heart surgery. We prayed hard that they would not go straight to the Norwood, which was the surgery that took him down the single ventricle path. We said goodnight to our boy and headed back to my room for some sleep. I tried to sleep as best I could, I wanted to get myself healed and back on my feet as fast as possible for all three of my kids. February 10th, 11:07 am we went back to see Jack and wait to hear from the doctors. I sat by my boy, I kissed his head, I ran my fingers through his hair, I tickled his feet; he was very ticklish even in his heavily sedated state. That afternoon we spoke to one of the doctors, there was no decision yet. There were two surgeons called away from the meeting and they wanted to make sure every single person from the cardiac team was present for the discussion before finalizing a plan. They would meet again tomorrow. We said goodnight to our baby boy again and went back to our room for dinner and rest. February 11th, 10:30 am I’ll be getting discharged today. They cleared me and got all my paperwork settled but said we could wait until the end of the day before actually being discharged. Because of COVID-19 there was only one parent allowed with Jack every 24 hours, but we got around that while I was still admitted because technically, I was also a patient not a visitor. Once I got discharged, we would have to start switching off, other than on surgery day. We went to spend the day with Jack, waiting for answers. We wanted to know the plan, but at the same time we were so scared of what the answers might be. There was still a chance they would decide to make him a single ventricle heart. A path we desperately didn’t want to have to take. 2:57 pm, “mom, would you like to hold Jack?”
Again!! YES, YES, YES! It wasn’t an easy process. It took lots of careful maneuvering of machines and wires and three nurses to place him there in my arms, but they were happy to do it for me. And I held my son, for two whole hours. I was exhausted, postpartum anxiety was starting to kick in, but I wouldn’t put him down, I couldn’t. 4:30 pm, the doctors had made a decision. Pediatric cardiac surgeon, Dr. Imamura, would perform open heart surgery tomorrow morning to try and repair or replace Jack’s aortic valve as well as repair his aortic arch. The news we had been waiting for, they were giving his ventricle a chance to come back, they were giving him a chance at a bi-vent heart life. More answered prayers, more of God's beautiful plan unfolding just for us. 4:54 pm, we said our goodbyes to Jack and headed home to our girls.
We spent the evening getting all the snuggles we could, early tomorrow morning we were heading right back up to the hospital for Jack’s open heart surgery, at three days old.
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