My wife had gone to sleep. I was holding my son, Micah, now a day and a half old, in my arms, while sitting in a chair in our room at the hospital, reading things on my phone. He had drifted off to sleep, something he was very good at, and did quiet a bit even while eating. I started to drift off too, and decided it was time to put him down in his mobile crib. I placed him in the crib and bundled him up and rolled him over to the couch/bed that I was sleeping on so I could watch him as I laid on my bed. He was a little above eye level laying there, but I could see him enough to tell the most important thing, whether or not he was breathing. Because that is what you do with babies who are sleeping, you watch to make sure they are breathing. Every once in a while, even when sleeping. You just wake up and look and you look and you look, because it is dark and they breath so fast and shallow that it is hard to see the movement. And you pray and you look and then you see the rhythm, you catch it, and you sign and close your eyes again and fall asleep for a little while. At least that is what I did with Maria, our firstborn, and what I did with Micah too, you know, before he had a breathing machine.
Two hours later we were awake again, Micah was feeding a little with mama. As had been the case several times the night before, he got tired while eating and fell asleep. We put him back in his crib. He made some whimpering noises but besides that wasn’t really fussy or crying. He’d been making the same whimpering noises the night before as well. It was a vast difference in comparison to our daughter. She did not like being put down, she would last a short while in her crib but then, sometimes only moments later, would burst out crying and demand to be held. Micah wasn’t like that, he was cool with being in the crib by himself. It was okay with him. The nurse came in shortly after that and took him to do his morning tests and review.
He was gone for a little while. I went back to sleep. My wife did as well, or she got up for a little bit…I honestly don’t remember. I was tired. Shortly after that, say 8am or so, the nurse came back in, but not with Micah. Micah had looked a little blue to her and his blood sugar had been low so she had run a blood acid test to check the level of his blood acid. This test came back with a low pH, which is not good for infants. So not good that he was immediately admitted to the Neonatal Intensive Care Unit (NICU) at the hospital. They were checking him there to see what was wrong and would be back shortly to tell us what was going on.
As you would naturally suspect nervousness set in, and worry, and a tiny bit of panic. Luckily the lack of sleep and caffeine does wonders to suppress the urge to go crazy with worry, and coupled with my usual calmness I took a step back and looked at the situation as best I could. So I prayed. In all reality it was what I could do given the situation, which was in the hands of highly trained medical professionals and God. Not mine. Therefore I prayed. I also called my dad and told him the situation, which prompted him to start driving our way from his hotel, about 30 minutes away in traffic. I also got on facebook and told people he had been admitted to the NICU.
This last step was very important to me. I don’t live in a vacuum, and I don’t want to. I know my friends would want to know. I know they would want to help. I know like me they couldn’t do anything physical at that moment, right then all they could do was what I could do: pray. I wanted to let them know that we needed prayers. This was important to me.
Some time went by, my wife got up to go to the rest room. I checked my phone. Someone came in who I hadn’t met before. She was the NICU doctor. She introduced herself and asked where my wife was and I told her she was in the bathroom. She took a seat in the chair I had vacated when she came in and I sat down next to her. She wasn’t telling me anything. She looked anxious and worried. I could feel the anxiousness and worry coming off of her. I can’t remember exactly what I said, but it was one of the following:
“Good news or bad news?” , “Is it good news?”
She shook her head from side to side. I signed.
“Is he alive?” I asked.
“Yes, but there is something I need to talk to you both about.” she said.
I signed again, in relief this time. My wife came and sat next to me. The doctor had been holding something in her hand, a piece of paper.
“Okay, I wanted to let you know that Micah has a heart condition. It is called hypoplastic left heart syndrome.” Here she gave us the paper, it was a picture of a heart with the words hypoplastic left heart syndrome written across the top of the page. “His condition is a congenital heart defect with no known cause. It affects the left ventricle of the heart, see,” here she pointed at the picture of the heart on the piece of paper, “this part of his heart should be as large as the other side. His did not grow, sometimes the doctor will catch it on the sonograms but just as often they won’t.”
We looked at the picture. It indeed showed a heart, except the left ventricle was shrunken.I honestly had no idea what that meant. I have always had a bad time with the circulatory system. Not from an understanding perspective, but from a staying-standing-while-people-talk-about-it perspective. In biology class in high school, the teacher said I turned as white as a sheet when we started talking about the circulatory system and was surprised that I took as long as I did to raise my hand to be allowed to go to the bathroom. I don’t have this response to the sight of blood or anything like that. Just the medical explanation of the heart and its system. So I knew basically nothing about the heart. And I only was able to grasp what she was telling me directly.
“Up till now he had an artery, the ductus arteriosus that was open which was keeping blood flowing to his body. It is open while we are in the womb and then a few days after birth it closes, since by then we are using our lungs.”
We nodded. I still really didn’t understand. But the why was not important to me yet. In the moment I don’t like to ask the why question unless it will inform a decision I am going to make. I knew at this point we weren’t there, we were at “This is what is going to happen” and that’s what I wanted to know.
“We have him on a drug now, progesterone, that works to keep that artery open. However, it is not a long term solution. He will need surgery for his heart, several actually, and that is where we are headed now. We are going to move him to Cooks Children’s in Fort Worth for the surgery. You can of course tell us to move him somewhere else, that is your right, but Cooks is closest and honestly the doctors that will be looking after him there and the surgeons are the ones I would want if it was my baby.”
We nodded. The thought, ‘Chicks dig scars’ flashed across my mind, knowing that Micah would have a pretty massive chest scar from this. Seriously, that was my gut reaction.
“Do you have any questions? Is the transport to Cooks okay? If so we will get all the paperwork going and get the transport team notified.”
I don’t remember asking anything beyond wanting to know when we would hear about the timing of the transport. My wife hadn’t been discharged yet, we needed to know if we were gonna need to split up or drive together. We gave them the okay for the transport.
The doctor had been good about the news, she looked us in the eye, she was sympathetic, she held our hands at the end.
“This is going to be a long road, but you are in good hands.” She said, and then she left us to go back to our son.