Cardiology
A couple months ago, the wonderful surgeons replaced Miles' faulty aortic valve with his healthy pulmonary valve and gave him a new pulmonary valve from a cadaver. Unfortunately, that valve has failed - meaning blood is freely flowing as if there wasn't any valve there at all. His heart is beating extra hard to help offset this and so they expect to see some abnormal development of his heart muscle (cardiomyopathy) and some fatigue. Since they were planning to do the second heart surgery in a year or two anyway they will just watch it more closely and perhaps bump up that timeline. The later they can do the surgery, the better the chance is they can get a large valve and conduit in him which will lengthen the amount of time until his next surgery... but the longer the wait the worse the cardiomyopathy gets. This is a familiar game. I hate this game.
Neurology
Two weeks ago we went back to the hospital for another 24hour EEG. The scabs on his head were still there from the EEG only two weeks before so it was a great conversation starter with the EEG tech. It went something like this: "See those scabs? That was the other guy, he did a horrible job and was much too rough for an infant's tender skin. I know we won't have that problem with you, I can just tell you are going to be much much more gentle. Much. More. Gentle." And it worked. The EEG was infinitely better for everyone. We went to the hospital because Miles kept having repetitive extreme startling reactions that looked suspiciously identical to infantile spasms. At first, I attributed them nervously to reflux but when they started happening in sets of five even when it had been many hours since he last ate (like in the middle of the night) I finally got some on camera, sent it in and was immediately called in to the ER. During the EEG, Miles had his episodes a few time and I was certain we were seeing that horrible beast of all seizures, infantile spasms, and it was a very sad, very dark time. However, when the morning came, the doctor called me up and said no seizures! no spasms! you're a crazy lady with some extreme paranoia! Ok, not quite but that's what I felt like he was saying. Turns out Miles has a very sensitive startle reflex... so even little bubbles in his tummy, or a breeze on his skin makes him startle. Within ten minutes of this wonderful news, Miles laughed at us for the very first time. Your comedic timing is on point, young man.
Mom I'm SO over this (PS so is Mom - Dad you get hospital duty next time)
Genetics
This week we met with an outstanding neurogeneticist - a true expert in Tuberous Sclerosis. Our previous geneticist squeezed us into an appointment to see her on Tuesday night at 7:30-9:30pm and the whole family had to be there. No I'm sorry, I said, it is not possible for us to make that as we have a toddler and we live on Bainbridge... ok, they said, her first available appointment is in late 2017. Welp, a late night it is. We learned that Miles' gene mutation is on the TSC2 gene and its particular mutation of one single nucleotide switch at this very important spot has never before been seen!!! As in NEVER. Don't you love being special? Unfortunately the fact that this is a TSC2 mutation statistically means the worse end of the spectrum in all the various manifestations. Of course, that's just statistics and I hated statistics in school, why should that change now. However, the doctor was so intelligent, kind and upbeat and for the first time I felt like I could count on a doctor to actually treat Miles as a whole baby (not just each individual organ of concern), who could coordinate his care, connect us to worldwide experts, introduce us to trials and preliminary studies and make sure he is seeing all the right specialists at the right time. Of course she happens to also be the world's busiest doctor but I plan to book her out every six months (starting late next year) into perpetuity.
Neurodevelopment
Miles is the most social baby. He loves faces and lights up as soon as he realizes somebody is paying him attention and interacting with him. He talks up a storm and it brings him immense pleasure to do so. We are over the moon grateful to see him doing so well cognitively. Due to the seizure medication and his heart working overtime and healing, we have a very sleepy baby. This is good for Kai (more one on one time with mom) and great for nights (usually only up once at night) but apparently when you sleep that much you don't get to work out very well... and your head gets flat. All this time, with all the hundreds of doctors appointments and everyone is paying attention to tumors and seizures and heart beats and stuff and nobody thought to look at his head until it was a big, flat problem (womp, womp). The doc says we could do a helmet... but as it is purely aesthetic and Miles has many other challenges to his aesthetic future (i.e. face tumors, eye tumors, teeth tumors, gum tumors, nail tumors etc) we decided to hold off. He is behind physically showing delays in his neck and core strength but we are confident it is because of his early arrival and very long hospital stay, surgery, sedation time and recovery time. He is starting physical therapy and I am super jealous - only three months old and he already has a personal trainer and a set aside time for exercise multiple times a day. Exercise... I remember exercise. Also, weighing in at 10.7 pounds, Miles finally made it onto the growth chart - he is a one per center!
Mom's heart and head
For a while there I was feeling pretty good - like I was going to tackle this new world with grace and learn wonderful lessons along the way. Then Kai began to really freak out about having a brother and started demanding impossible things of me. Then my husband signed himself up (ok - he was voluntold) for a new leadership position in our church that will require a ton of time and energy demanding more impossible things of me and then we received some disheartening news about Miles' physical development and the impossible things we will be doing together and I kind of stopped feeling pretty good. People have asked what they can do to help and I'm so thankful and relatively good at asking when I really need something. Right now, I relish having people to talk with who understand, who empathize knowledgeably or have unique perspectives and stories to tell. I LOVE when people have actually taken the time to learn a little about Miles' condition - there is nothing in the world that means more to me than that. My dad got signed up right away to volunteer for the TS alliance's federal lobbying program in DC and even bought little TS Alliance K-Cups for his coffee. How cool! I love learning about people's family members who have children with mental or physical disabilities, and how they cope and the joy that child brings; I want to hear if you have friends on the autism spectrum - did you have seizures as a kid? Please tell me. In a smashing-the-facebook-colored-glasses sort of way, it makes me feel much less alone in this new very lonely world because so many people are doing the impossible and I can't wait to be inspired. There's a wonderful song in Rodgers and Hammerstein's Cinderella called Impossible and I keep dwelling on the last line:
"Impossible things are happening every day."
It's possible.
