It's official. We've made it to the Fontan.
I read that back to myself and it brings tears to my eyes. She made it. We made it. We've just got one more major open heart to go. We are among the lucky in that we have a chance at having a child with half a heart live a pretty normal life once we get through this last major hurdle.
Three years ago with this baby in my belly -- the doctors set out hurdle after hurdle, milestone after milestone -- explaining to us that if we we were lucky enough to find ourselves on the other side of each of these hurdles -- the baby's chances of survival would steadily increase:
- Get the baby/pregnancy to full term
- Have an uneventful, complication-free delivery
- Survive the first major surgery -- the BT Shunt -- and the subsequent caths that go with it
- Avoid failure to thrive at all cost, get her to grow, grow, grow so she's a good size leading into the next surgery
- Survive the Glenn -- the second open heart procedure and the caths that go with it
- Have a successful enough Glenn to ENJOY watching your baby grown into a toddler so that they are as physically active, robust, and healthy as possible prior to the Fontan
- Survive the Fontan -- the third and potentially LAST major open heart surgery -- and your kid -- while never free from needing some additional medical procedures and medications for the rest of the their life -- will live a happy, healthy, pretty much normal life.
- If you get to this bullet - it means you've survived the Fontan....go enjoy your child.
When we were in and out of the hospital during the first eight months of her life, I remember seeing the Fontan families. I couldn't even picture my little peanut, my little newborn blob...a toddler. An actual kid, who could talk, tell me how she was feeling, sitting up in her hospital bed with tubes and wires attached to her and having some kind of child-like comprehension of what was happening to her.
I remember thinking to myself. God, that looks hard. Those are real kids. Kids who can talk and have feelings and can express those feelings and thoughts. How the hell am I going to do that? And then I would look down at my little blob of a newborn and think -- god, I hope we're lucky enough to have to go through however hard that's going to be. Please God, get her to the Fontan.
So we're here. And as scared as I am to take this talking, walking, feeling, thoughtful, expressive, feisty, PERSON into her next open heart surgery -- I feel so lucky that we've made it this far -- that we get this chance at normalcy. And I feel equally as grateful at how uneventful the past almost TWO YEARS has been for our family. Because that's also just about as unheard of as anything else. She has done so well. Remarkably well. We are forever grateful. Forever grateful.
She knows something is coming up. Just the sheer amount of time I have to spend on the phone with her different doctors and specialists, the health insurance company, whomever -- she hears the word surgery, she knows I'm talking about her, she gets it means she has to go back to hospital. Sometimes he even cries about it -- saying she doesn't want to go to the hospital -- she doesn't want to have surgery. So, it's hard.
You can't get too into it with a toddler for obvious reasons -- I mean, think about Christmas. This was the first year she was really trying to wrap her head around the concept of Santa. She had lots of questions, she obsessed about his whereabouts and who he was, where he lived and what he was doing at any given moment. Toddlers tend to obsess. So, I don't want to get into it too much with her until we're closer to the surgery date. No need to build up unnecessary anxiety around something she can't fully understand.
How could she remotely try to understand what's coming, or even worse, why it's coming, especially since she doesn't necessarily feel sick -- although I am seeing signs that she needs the surgery -- blueish lips and fingertips, limited energy and stamina when playing with other kids, trying to run around or exert herself usually ends in a "mommy my body hurts, I need to take a rest." All of which they told me was normal for her at this stage. Normal signs that it's time for the Fontan. But when it comes down to it. She's really not going to understand why she has to go to the hospital, why she has to have her chest cut open, why she's in a world of pain, and why mommy and daddy are letting it happen.
But we'll hold off on all that nerve wracking stuff -- we'll wait until we're closer to the surgery and sometime, maybe a week before we take her in, we'll start "playing" it through -- you know, play surgery with one of her teddy bears kind of thing -- just to get her even remotely familiar with the hospital life that she simply just can't remember is such a huge part of her little past.
So, in the meantime, to get away from our unrelenting PT schedule, and just our regular day-to-day crazy shuffle in general -- we're so fortunate and so lucky to be able to leave the frigid New England winter for the cloudless, sunny, blue and unbelievably beautiful landscape that is Southern Utah.
We are so fortunate that my family has a little place in the Utah dessert where we can get away from it all, let the kids run around in the fresh air, swim, play and just have some normalcy and get a nice long break before we hunker down for our next major hospital stay. My husband will only be with us for the first part of the trip and the last part of the trip -- going home to Boston to work in between -- but it's a busy time of year for him anyway and it'll be good for him to get a ton of work done before the surgery as well. We'll miss him but it's healthier for all of us -- especially Haven -- to get out of the cold and into the sunshine.
All of us will need to soak in as much sunshine as is humanly possible heading into April and we are beyond fortunate to have the opportunity to do just that as we head out to the desert.
Like I've said a million times before -- we are so lucky -- in countless ways -- we are just so so so lucky :)
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