“No big update today. Micah’s numbers are fairly stable and he’s starting to cough up the mucus on his lungs pretty good. He’s moving around a lot more now, and the nurse said that he even slightly opened his eyes when she bathed him earlier.
We spent a good deal of the day with our daughter and my wife’s parents. Maria has been through a lot of not having is around and I think she needed some time with us. Janel’s mom has been a real trooper handling Maria and the dogs and the birds this whole time.
Thank you all for your continued prayers and thoughts. Gonna leave you with a short poem I wrote on Tuesday.
My charming baby boy,
Your heart is too small,
For your body,
Your life is now in the hands,
Of some wonderful people,
Who are working their hardest for your recovery.
My darling baby boy,
I hardly know you yet,
I want to know you more.
I want to hear your shouts,
Your tantrums, your woo-hoos,
Your hurt feelings, your bright smiles,
I want to give you all of my love and all of me.
My strong baby boy,
I want to see you grow up,
I want to see you grow old,
I want to see you break your heart,
And find your true love,
To live the great adventure,
To get the best of life,
But mostly my dearest Micah,
I want to know you.”
“Update on Micah
Today some of his blood gas numbers went the wrong way, not by a lot but by enough that he is being re-sedated. He is moving around much less but is breathing over the ventilator much less as well, which is what they were shooting for. The mucus on his lungs is mostly gone as well, which was the reasons for the un-sedation in the first place. Now they want to make him super stable in preparation for the surgery.
Our daytime nurse said she would be surprised if the surgery didn’t happen on Tuesday. There is another baby having the same surgery on Monday. We also learned that there are another 3-5 babies here now with the same diagnosis. Both our day nurse and nighttime nurse spoke exceedingly highly of the surgeon, Dr. Tam. It feels very much like we are in the right place.
Micah was baptized today, just the extraordinary variety. No God parents yet. That all will be done in a ceremony sometime after the second surgery.
Maria spent the day at the Fort Worth Zoo with bff Ashley. Thank you Kelly and Jared for taking her, it made logistics today far easier. Thank you Kate and Nathan for picking my Mom up at the airport, that also made logistics far easier. Thank you Bob for sacrificing your truck to the Orlando Airport roadway gods to get Mom to the airport.
Kelly has set up a meal provision thing for us, if you are interested in signing up let me or her know and we’ll send you a link.
Thank you all again for your continued prayers and support #TeamMicah”
“Update on Micah
Blood gases were good, but he did take on a lot of fluid today. It’s just a balancing act at this point, which is why the surgery is still a go for tomorrow morning. Without it he will just persist in this state, going back and forth just a little.
Had several long conversations with various doctors today, the neonatal cardiovascular doctor in the NICU, the anesthesiologist, and the cardiovascular surgeon. Micah has a rough road ahead and a long day tomorrow.
The surgery is gonna be about 2-3 hours long and involves redirecting/rebuilding the outlet of the right ventricle to go to the body arteries instead of the lungs, where it normally goes. And putting in a stint of some kind so that some blood is still sent to the lungs. He’s gonna puff up due to immune response to the surgery and will have an enormous number of wires coming and going from him. His chest will also be open, with a covering over the opening, for several days.
The roughest part will be coming off of the heart and lung machine. While in surgery his blood will be circulated by the machine which will do the job of the heart and the lungs. His heart will stop for some amount of time. Once the surgery is done, he has to transition back to his heart and lungs doing the work. That is the dangerous point and really it will last for several days as his body rebuilds itself to a rhythm, and then starts adjusting itself to the real world. So far all the medicine he has been on has been tricking his body into thinking he is still in the womb.
Tonight he got a thorough bath and we got to hold him, below is a picture from that.
Thank you all for your prayers, thoughts, and support. The next 48 hours are the big ones. Thank you again.
The next several days were somewhat of a blur, in that nothing spectacular or specific occurred on any given day between day two and the day of the surgery. The wife and I fell into something of a routine. I slept on the reclining chair, which was terrible, Janel slept on the pull out couch, which wasn’t super great either. I spent a lot of time reading the book of Joshua. We spent a lot of time with family. My wife’s mother brought our daughter up to the hospital most days to visit. On week days she would come for lunch and leave before traffic. On weekends we got to spend most of the day with her. My dad came over most days to visit and make sure we were getting fed.
Micah was stable, for the most part. There was a balancing act being done between the medicine they were giving him, his breathing rate, and his fluid level. I couldn’t really tell at the time but Micah had puffed up pretty dramatically over the first 48 hours. This was due to him not moving coupled with getting lots of IV fluids. They started him on diuretic medicine pretty soon after we got there but him being sedated still left him with a lot of fluid in his body that wouldn’t normally be there. The more awake he was the better he was able to get rid of it, but the more awake he was the more he breathed on his own, and that brought with it a different set of problems. At that time Micah’s heart was really only pumping blood out from his heart to his lungs and then back from his lungs to his heart. His body was getting only a small trickle of blood, like 1/7th of what was going to the lungs. This number could be increased by making him breath slower. The less you breath, the less the lungs think they need blood and the less hard the heart pumps…or something to that effect. Like I said before, I’m not a doctor and at that time I still didn’t know a whole lot about the circulatory system. So everyday was either one way or the other: he was too sedated so he had too much fluid or he was too awake and didn’t have enough oxygen going to his organs. Obviously he couldn’t persist in this state, hence the need for the surgeries.
Speaking of, as the days wore on, we spoke to more and more folks about the upcoming surgery and what it would entail. I distinctly remember speaking to three people in particular. First the cardiac nurse practitioner, then the anesthesiologist, and finally the surgeon himself, Dr. Tam. Each talk hit on a lot of the same technical points, but each talk was from a different angle. The nurse practitioner focused more on us, what would happen during the surgery, when they would call us, how they would contact us, where we should wait for news, what to expect in general from our perspective. It would be an 8 to 10 hour ordeal. We would get called once the preparation was done, which was roughly 2 hours. We would get called once Dr. Tam began to operate. We would get updates every two hours after that. Micah was the second surgery of the day so it would be in the late morning. The nurse was a veteran, she had seen a lot of cardiac kids, she was fairly calm and had a very sweet demeanor.
The anesthesiologist was more direct and intense in general, different personality than the nurse practitioner. Micah would be heavily sedated. No he had no allergic reaction to anything. No we didn’t either, or at least not anesthesia. Micah would be on the heart and lung bypass machine. While on it, it would serve as his heart and lungs and allow Dr. Tam to work on his heart. The work would more or less be a complete restructuring of the heart. Once the work was done, then they would restart his heart, and get him off bypass. After that, the sedation would come down, but in general he would still be sedated and on strong pain meds once we saw him after the surgery. My son’s heart was going to get restructured. For some amount of time it would not be beating. For a long amount of time it would not be beating. And once they were done they would have to get it started again. It still sounds incredibly crazy to me even now. Even now after the surgery is long over, my mind still boggles at what they did. At the time it was literally too overwhelming to process emotionally.
Honestly, I probably still haven’t fully. As I’ve said before it takes me a long time to process large changes. For instance it’s just now sinking in that we really did move to Dallas, and we’ve been living here for over a year now. This was so much change, so fast, that a lot of the emotion of it got shuffled into a bin and got put on a shelf. I take it out sometimes now and deal with little bits of it, but at the time I focused myself on the technical details as much as possible. It was the best distraction I could find when I was faced with the terrifying truth of what was about to happen. After the anesthesiologist was Dr. Tam, but before we talked to him I looked at and read up on as much about the procedure and Micah’s condition as I possibly could. It was like the anesthesiologist said. It was a complete restructure.
Talking with Dr. Tam was pretty fantastic, honestly. He’s about as even tempered an individual as I’ve met. Somewhat soft spoken, very deliberate with his words, but also very intense, with a very deep feeling of “being right” about him. He didn’t start by talking about the technical aspect of the procedure. He started by giving its history. The development of the procedure in the late 70s and early 80s where it only had a 5-15% success rate, which was on par with the transplant option. He talked about how it had been refined, how some hospitals had abandoned it early on and how some others had picked it up. He talked about how now the chances of success had increased dramatically, flipping the statistics to close to 85-95% success. A lot of that had to do with early detection. He said the chances of survival were less for babies that had gone home and then been brought back in. Micah’s chances, he thought, were closer to the 95%. Then he talked about the procedure itself. But really it was the same as I had read and seen. Walking away from the talk, I felt very reassured that we were in the best hands we could have been.