The day is Sunday, February 15, 2015. Case is almost 6 weeks old. His big surgery is on the books for the following Wednesday, but he becoming more sick by the day. We have clinic Monday and Tuesday for all kinds of pre-op stuff so we are heading to Houston early. We get checked back into RMH and prepare for a long day of appointments on Monday.
We arrive to clinic and go through the usual procedures–one more echo, one more x-ray, one more pulse ox, one more EKG. We are meeting Case’s surgeon for the first time. The man we have been praying for. The man with steady hands and determined heart. We meet Fraser and his team. He is kind, but transparent. He makes no promises. He tells us his surgical plans. Plans people, plans. Because Case’s pulmonary is still measuring 3mm wide, and in order for it to become his aorta it needs to be 5 mm wide. But he says he needs to see for himself. To make sure we don’t miss an opportunity to make the switch happen. We trust him. He’s the best, world renowned and we are out of options. Case has lost more weight. His skin is dusky, his finger tips pale blue, his lips a grayish pink. His tiny heart has been working in overdrive the past six weeks. Trying to keep up with his body, but he is tired. So very tired. Fraser holds him, listens to that heart, then answers our questions.
Because we are already at the hospital, they send us down for lab work. By now it’s after 5 and the waiting room is crowded. There are screaming kids, crying babies, stressed and overwhelmed moms and dads, just trying to survive lab work, let alone what comes next for each of them.
They call Case. We go in. The room is tiny and the tech can’t get a vein. She tries and tries. Case is screaming. He is passing out from screaming so much. They call VAT (vascular access team) , and it is even difficult for them. They finally get a vein, get the blood and we leave. Case is so tired. He sleeps and refuses food. David and I take turns staying up with him during the night. I don’t think either of us have slept since in days. We are are too nervous. Our minds, they won’t turn off. Thinking of the things that could happen. The conversations we had to have. “What if we don’t walk out of this hospital with our baby?” “What if we leave as two and not three…?” Conversations that no parent ever wants to bring up–but we did, and we know what could happen. But we trust, because not trusting, like I said before, it’s just too hard.
We arrive in clinic on Tuesday morning. Case has still not eaten and is lethargic. His cardiologist, Dr. Ayres, runs into us, I ask her to look at Case (we were there to see Fraser’s NP) and she begins checking him out, making calls, something is not right. She says I did the right thing to find her, but what if I waited to long…? The NP comes, gets some Pedialyte in a bottle and he drinks a little. He is dehydrated and worn out from labs. For about 6 hours surgery is off until they can get him a bed on the step down floor to better assess him. He finally eats and the decision is made–we can’t wait. Surgery is on. Case and I spend the night on the cardiology recovery floor and David goes back to RMH so we can keep our room.
It’s February 18th now, a day I will never forget. We leave the room at 6:30am, Case is still sleeping. He’s in his extra clothes from the diaper bag because we didn’t have anything else. We go to the surgical floor and meet the anesthesiologist. The Child Life lady is there, and she is wonderful. Her calming voice stills my quivering soul. David is quiet. We can’t put into words the feeling of letting your baby go. Giving him to physicians for what will be a 12 hour surgery. Chest open. Bypass. At six. weeks. old. We give him one more hug and kiss and watch the MD and PA walk with him down the hall, through the double doors, into that sterile OR where his life will be put on hold. My heart is breaking. I do not know if I will see him alive again, and I’m trying to hang onto this memory, ingraining it in my brain. His blue eyes, his pale skin, his sweet smile. David and I walk to the elevators and we both cry. We needed to. Before we went down to the waiting room, we just needed to cry. So we did. Our kid is in the OR and we are left there, at the elevators waiting. crying. praying.
If I have learned anything from those days, it is this– It is ok to fall apart. Sometimes, we need to fall apart to be put back together. At that point, it hurt like hell. I have never been so broken, or felt so abandoned. The weight of the day is oppressing and I feel as if I can’t handle it. The darkness is flooding back. The doubt, the worry, the lack of worth. But there was light, and we were being filled. Being filled by people who just showed us love when we needed it. It was a long day, and I’ll tell more about tomorrow. But just know, we were empty, so so empty, but being filled.
[Originally posted 2/10/2917]
If you would like to read more of Case’s story, click here.