It seems like I'll never finish this story. There's something new everyday with this kid. Here's what I have so far. I'll keep trying to finish it...
Although Linus is Simon's identical, I don't think they look particularly alike. Maybe it's just a "mom thing". He cried at birth and had pretty good O2 sats for a while, but needed an oxygen hood before leaving the stabilization room and heading up to observation. He was pink and beautiful and wide eyed. He didn't seem quite as laid back as Simon, but didn't hold a candle to the fit Dexter was still throwing. He's my "happy medium" boy.
He did well on minimal intervention & was taken off oxygen less than 24 hours after birth. On my 2nd visit to the NICU, Sat morning, he was getting his first bath. It was my first glimpse at his temper. Such a cute tantrum and it stopped when the nurses were done cleaning him up. Later that day I was told he and Simon were doing so well that they planned on graduating them to isolettes. I was thrilled at his quick progress.
The next morning I called down to check up on my boys. Dexter's labored breathing had scared me a little the night before so I was worried about him in particular. Instead of patching me through to the nurse taking care of them, the neonatologist came on the line. She told me they were just trying to find our room number to call about "baby b" having issues. I thought she must have been confused and was talking about Dexter. She went on to say that he was in distress, he was grey, they had lost pulses in all 4 extremities and believed he had an aortic defect. She had to get off the phone suddenly because Linus was being wheeled past her right then. They were transferring him to NICU III and would call me back after an echocardiogram gave them a better idea of what we were dealing with. I was in shock. I'd seen the boys just a few hours ago as I took Trina's milk to the NICU after every pumping session. After an hour I called to check in on him, I couldn't remember if she gave me a time frame or not. I was told that they were still doing tests & they'd call me back.
It was time for me to take more milk to the NICU, but I was afraid if I left the room, they'd call. I waited as long as I could before going upstairs. I was only there for about 10min before I got a text from Trina reading "come to the room NOW". I ran out of there, down the hall and to the elevator. I paced and cursed at how long the damn thing took. When I walked into our room I didn't expect to see our pediatrician sitting there. Where was our neo? Trina was crying so I went to her. Dr H said that she'd been with Linus and they were 75% sure they had a diagnosis so she wanted to come talk to us before they summoned us to his bedside. It was believed he had congenital aortic stenosis. Since it is rare to see symptoms in infants, his case must be severe and he would most likely be transferred to Children's Hospital and need surgery to resolve it. How could this be?? I had JUST seen him. The last pictures I took of him showed his big bright eyes and fat cheeks. Surely there was a mistake. I didn't hear much else of what Dr H said. I remember bits and pieces of her telling us what a wonderful hospital Linus would be going to and to keep hope alive no matter what the odds were. She left and Trina was sobbing. She'd only seen Linus twice. Once for a minute in the OR and once in the NICU. I held my wife and tried to make sense of all of the information that was being thrown at us.
A few minutes later our room phone rang. It was our neo, she wanted to talk to us at Linus's bedside. We loaded Trina up in a wheelchair and headed out. NICU III is so much brighter, busier and scarier than NICU II. Dr F explained that Linus had critical aortic stenosis. His aortic valve was completely obstructed and the only way oxygenated blood can leave his heart is by way of the PDA, which had closed as it was supposed to. This caused him to go into cardiac crisis. They had started him on meds to trick his DA into opening again and had also put him on a ventilator. I was assured he was very sick but looked much better than he had. When I saw him I was in shock. THIS was better? He didn't even look like my baby. His skin was a mottled waxy hue and he was so still. I broke down and cried and touched him as gently as I could. Dr F said the transfer team was on there way. They go there quickly and began the long process on moving him from his bed into the transfer isolette. Trina and I watched them prepare him for the move with tears running down our faces. One of the flight nurses that was transferring him gave me his floor and bed number so I could meet them over there. And then he was gone.
I took Trina to be with our other two boys in the NICU and made arrangements for my sister to come stay with her. By the time I had thrown a few things into a bag for myself, my mom and younger sister arrived. They drove me the short mile to the other hospital. By the ime I made it up to his floor I was almost running. I had to slow down and breathe. I knew freaking out wouldn't help him. There were so many people crowded around his bed, doctors nurses surgeons tech, respiratory therapists. Some of them introduced themselves, some ignored me. I felt like a deer in headlights. A nurse took me aside and started asking me basic question. What's his name, birthday, birth weight, your name, your relationship to him, your social security number. It was grounding to have so many answers when I felt like I knew nothing.
A doctor came to talk to me, but treated me like an idiot. "Your son has a sick heart and it needs a little help" If I hadn't been so shell shocked I would have been really offended. I think I said something like "How long can you keep the PDA open?" He hemmed and hawed. Said something about how it couldn't be kept open indefinitely. I was done listening to him. I walked away.
Another doctor came up and introduced himself. He explained that Linus needed a balloon catheter procedure to open up his aortic valve. Eventually he would need open heart reconstruction, but no one was comfortable doing that at this point. He was too small and too sick to survive such an invasive procedure. They were hoping this catheter deal would buy them the time they needed to be able to do more later. He made it clear there was a very good possibility that he wouldn't make it through this procedure either but that it was their only option. He asked if I would sign consent and I told him I would. A few minutes later he came back saying that although Linus was a critical case, he was relatively stable for the moment. He wanted to wait until morning to do the catheter because there was no ECMO team available until then. He didn't foresee needing them, but also didn't feel comfortable not having them there in the Cath Lab. They would monitor all night and only go in if there was an emergency, otherwise they'd do it in the morning. I said ok and called Trina to tell her about the change in plans. As I hung up, he reappeared and said, we have to go in now, his blood gases just came back and they're bad. I had emotional whiplash. I said "But you said you needed ECMO and that they'd be here in the morning" He replied "Your son won't make it until morning." They started preparing him immediately. I was terrified...
Coming into this world.
Under the oxygen hood in observation.
Last time I saw him "healthy".
Right after his 1st surgery.
Day after his procedure, with his eyes swollen shut.
All of the gear keeping my boy alive.
Crying at Linus's bedside. A daily occurrence for me.
Tanning. I think those are Gucci sunglasses.