“Anxiety is nothing but re-experiencing failure in advance. What a waste.”Seth Godin
Day two of diagnostics began bright and early, but was scheduled to be much shorter. One on hand a lot of the logistical anxiety was over for me. I knew where to go, I knew where the elevators were, the different offices, even the cafeteria (My mom says the mushroom brie soup at CHOP tastes like someone’s grandmother made it. She was very impressed) Most of this day would just be hoping that we had jumped through all the hoops correctly, and that I was deemed healthy enough to have the procedure. I had gone over all the factors that would have denied me in my head all morning, my BMI was normal, I don’t have a history of heart problems, I am in the appropriate age range, I have a support system, I have never had a previous C section, and so on and so forth. I went through the list in my head a dozen times, but it just kept buzzing.
We met with the Neo-Natologist, who was completely hysterical, and went over what we could expect from the baby’s NICU stay, and the best and worst case scenarios for preemies, as SB babies pretty much never gestate past 37 weeks, and with the surgery there are risks they can be born much earlier. Luckily I myself was a multiple, and was born at 32.5 weeks, so my parents and family in general was very familiar with NICU benchmarks and protocol. The doctor was hilarious and really cut the tension of an otherwise really stressful day, we bonded over our love of Disney and he asked me if he could come to my delivery. I told him that everyone else was going to be there, so the more the merrier.
Eventually we did our various meetings for the day, and met with the entire surgical team. We were in a small conference room, and there must have been at least ten people there. We met with the legend himself Dr. Scott Adzick. Dr Adzick INVENTED the surgery we were trying to have on the baby. You can see him all over the CHOP website, and in all of their promotional surgical videos about the procedure, as well as featured in their Documentary related to the same entitled Twice Born. I will include some links on the same below for those who are interested. The man has a quiet calm aura, and you can tell within moments of meeting him he is the most intelligent person in the room. (Which is really saying something, as the entire team are rock stars) He also looks a lot like Dick Van Dyke, and has amazing blue eyes. I told him he was the Brad Pitt of the hospital which he found amusing and commented to me that he was going to tell his wife that when he returned home. Dr Adzick went over the entire history of the procedure, starting from their trials decades ago in sheep, to monkeys, to an experimental human trial, all the way to today. His team has done the most fetal SB repairs in the entire world, and he trains the other doctors in North America and Europe who now perform the procedure at other hospitals. He is truly an amazing person. The type of person who accomplished all this, is head of fetal surgery, and also got an MBA from Carnegie Mellon in his spare time.
We also had the pleasure of meeting Dr. Greg Heuer. Dr. Heuer, also brilliant and empathetic and FUNNY. He really knew how to lighten the mood and has a real passion for what he does. Between the two of them I think they are some of the best doctors in the entire world, and I mean that in the most unbiased way I can express. He went on to tell us about his passion for these kids, and how completely amazing and inspiring they all are. He went on to tell us that once he performs surgery he considers them “his kids,” but he will allow us to foster parent the baby moving forward. Speaking to him gave me a huge sense of relief and a huge dash of hope that our son would be happy and healthy. In his words “These are normal and happy kids, they just may have some different ways to get around and function day to day” And you know what? He is right. And that is okay. Speaking with him was one of the highlights of my day, if not my entire journey here in Philly.
Also in the room, was our amazing coordinator Stephanie, who was such a comforting and strong presence for me. The Anesthesiologist, whose name I cannot remember due to the flood of people I met, but who was a very pretty brunette, I have never seen such a beautiful medical professional in my entire life, and she was a complete rock star. Smart as a whip, and performed the perfect epidural on me later that week. I cannot thank you enough wherever you are. As well as one of the OB’s, and various other team members. Now you’d think with this many people coordinated to be in one place at one time that would mean we got approved …. right? But nobody had said the words to me “You have been approved for treatment” to me and therefore I was still kind of feeling like we were in limbo. I guess everyone in the room assumed we knew that we had been picked as candidates, and we were over tired and oblivious, which in hindsight is very amusing, because at the end of everyone’s speeches they were asking us if we thought we would go through with the procedure or if we had decided against it. Luckily since we had over a month of discussion and writing out a pro and con list already, Jesse and I were on the same page already, and knew that we would want to move forward.
We told the team we were wanting to move forward. We had been told through the process that most likely if approved we would be scheduled for early the following week, so I was ready to rock and roll. After weeks and weeks of waiting I was ready for them to help my baby and begin healing. The team shook my hand and said that we would schedule the procedure “in a few weeks,” and my stomach… dropped.
I began to cry. Not huge choking dramatic sobs. No the kind of crying when the person goes pale, and just a few pathetic tears escape and trickle down your cheeks. The kind of crying when you are just so exhausted and emotionally spent that you cant sob, but the fluid keeps coming out of your eyes. Dr. Adzick immediately looked very uncomfortable and asked me if I was okay. I tried to explain to him in the most coherent way I could, that we had traveled a very long way, and that due to me finding out earlier than normal about the baby’s condition I had been living with this cloud over my head for weeks, and was under the impression that we would just be waiting over the weekend into the earlier part of the following week. I was so embarrassed that I had broken down in front of this brilliant doctor, who most likely now thought I was a lunatic. What I didn’t say to him was that I had been hotel hopping, and was far from home, and in addition to worrying about my baby was throwing money into a pit in order to stay close to the hospital and feed us, all the while paying all of our bills back home, mortgage and car payments etc. I also hadn’t yet gotten my medical leave paperwork approved by my place of work so that was also up in the air, and my anxiety brain was convincing me that I was going to lose my job, lose my medical insurance, and yanno. the sky would also fall leading to an apocalypse of some sort.
He immediately looked over at our coordinator Stephanie and asked her to remain behind after the meeting. I was not sure if this was a good or bad sign. In reality what I THINK happened, is that I assume another patient was approved who was farther along than I. You see, while the procedure used to be performed at an earlier gestation, it was found out that if you wait slightly longer before going under, that the chances of complications went down. I was only around 21 weeks at this meeting. The fetal repair cannot be performed past 25 weeks 6 days gestation. This is all conjecture, but I theorize that a woman who was farther along than I had a more time sensitive situation. whereas I had a few weeks of wiggle room. Of course I would want said mom to get the care she needed, but I didn’t realize all of this until later that evening when I could ruminate on the day as a whole. The following morning I got a call from the office that they were willing to see me the following Thursday for pre-op, and procedure for Friday the 26th of April 2019. They advised me that normally they only do two fetal surgeries a week, as the team is very hard to coordinate, but were making an exception and performing one on a Friday. I’m not sure if perhaps the Easter holiday had put them a little behind, or if they all felt the need to convince the team to make it work after my complete melt down. But never the less we had a CONCRETE date.
It was happening.
The baby was getting help. We were approved!
But.. now what? What do we do in Pennsylvania for the next nine days?
Twice Born Info: https://www.pbs.org/show/twice-born/ (This doc is available on amazon stream, DVD etc. Worth the watch but highlights can be found on here and youtube)
Fetal Surgery Info: