Tomorrow, Mireya will go for her third open heart surgery. This is a big one, and I've found myself far more nervous about this one than any of the girls' previous open hearts. It's a big difference - Hope's surgery and Mireya's first two were when they were newborns. It is heart-wrenching to turn over your brand new newborn baby. Beyond describable. But this is different. Now she is a little person. She has a fully developed personality. She has opinions, likes, dislikes. She is a funny, little imp of a girl and I can't imagine turning her over, for a procedure that will likely have her waking up in pain. I'm so terrified she is going to be scared, that it is going to change her somehow, and that I won't be there to protect her.
But it is inevitable. Just like right before every procedure she has ever had, which now totals at 7 caths, 2 open heart surgeries, and one g-tube surgery, she needs this surgery. Over the last few weeks, her eating has become poor. She is breathing harder and harder, her hands and feet are usually purple and cold, she has taken on a bluish tint, and the last few days she has been sleeping a fair bit. Her O2 levels remain in the 80s, which really surprises me.
All went well at pre-op on Friday. They did a CT scan so that they could get a 3D image of her heart, to provide her surgeon with a better road map. Surgery was supposed to be today, but we got bumped until tomorrow. Originally, they tried to bump us until Friday, but I was not happy with that at all. We've made a ton of arrangements to make this work. We've taken off of work, sent Hope and Sanders away and were prepared mentally and emotionally. TO have to wait another 4 days would have been excruciating. As it was, the extra day was a bit much for me.
Her surgeon, Dr Baird, is going to go for the full repair. When we discussed it back in January, we did not think this was going to happen. Dr Friedman, her cardiologist, seemed to feel pretty strongly at the time that she was not ready for the hole to be closed, so we went into this thinking that they would "only" be replacing the conduit and unifocalizing the last collateral artery and that we'd have to send her back to the OR sometime around 3 or 4 years old to patch up the VSD. At the time, he thought the pressures in her heart were too high and the closing the VSD could make things worse for her, even be catastrophic. Once they close it up, they can not unclose it. So I was pretty surprised at pre-op on Friday when he told me that they had decided to attempt to close the VSD. They are going to try to do what is called a fenestrated VSD. This means that they will leave a small, hole in the VSD patch. This hole, may close up on its own, or it can be closed later on in the cath lab, hopefully avoiding another surgery. If after attempting to patch it, the pressures are still too high, they will be able to take it down before closing her back up. I'm nervous about this, but Baird is one of the best and he is confidently aggressive. This is what I like about him.
I feel like we've been preparing for this forever. In some respects we have - since Mireya was born, we knew there would be a surgery further down the road. I think we thought it would be further along. Since she was born, it has been procedure after procedure. After her first two surgeries, we were in for a cath every three months - January, March, June, October, January, and now..... The caths have become sort of routine for us. I've even worked in the morning of the last two caths. Surgery feels so much bigger. We've become familiar with the staff up in the cath lab, which has its own prep and recovery area. For surgery, we go to a completely different floor. The pre-op prep area is shared by many departments in the hospital, as is the waiting room, and recovery takes place first in the OR, then up in the CICU, which is where we will see her again. When the team believes she is ready, they will transport her up there and will be welcomed by a team of specialized nurses. They will spend an hour tweaking the machines, the meds, etc. before we are allowed in to see her. Sometime in that time, Baird will be by to tell us how it went, but I suspect we will see Friedman before we see Baird. He's usually pretty good at finding us.
We will do our usual - wait with her until they tell us it is time to say goodbye, then we will head out of the hospital to kill time. There will be a lot of time to kill - probably close to 6-8 hours. We like to go out to lunch and have a cocktail to take the edge off. Stephanie's on Newbury is where we've gone for 2 out of 3 of the last surgeries. The liaison will keep us updated on the hour and whenever they do something important, like make the incision or put her on bypass. That is our plan for tomorrow as well. After lunch and a little walk, we will head back to the hospital to wait it out. It will be a long day for sure.
I've had trouble keeping up with the blog since going back to work. It's been busy, but a good busy. I've been happy. I'm hoping to use some of the time in the hospital to update everyone on what we are up to.
The most exciting news is that I will be once again raising funds for Boston Children's Hospital, but this time I will be running the New York City Marathon for the hospital. If you'd like to help me raise important funds for the hospital, here is the link:
http://fundraise.childrenshospital.org/goto/Crellin
I am obligated to raise $3000, but would like to double that. I raised over $5000 in 2015 when I ran Boston on the Miles for Miracles team. I want to go beyond that. Can you help me raise my minimum by July?
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