Echos of Denial

So here we are with 2 days until the fundraiser and one day before Isabelle’s sedated echo. I have been pretty preoccupied with so many different things- people, work and the fundraiser that I haven’t thought about our appointment on Friday. It’s going to be a rough one. We have to have her abstain from milk after 2am, and then she can have juice until 6. Awesome. Then we have to keep her awake so the chloral hydrate will be effective. The whole process is pretty overwhelming in itself. Anyone who has a toddler knows that if anything sets them off, it’s being hungry AND tired.
I remember our first echo after her initial diagnosis at 17 weeks and praying there was some mistake. Maybe the left side would miraculously grow and we can all laugh and thank God this was a terrible mistake. But that isn’t what happened. It took forever for Dr. Levine to find her aortic arch. Her left side hadn’t grown at all. It was all the same and nothing had changed.
Going into this appointment tomorrow I am praying nothing has changed. I am praying there is no tricuspid regurg, any surprises. I pray her ‘squeeze’ remains good and that her function remains good. I have learned by watching others that there are always surprised lurking inside like ticking time bombs we don’t know are there. It’s scary and I didn’t know I was scared until I forced myself to think about it just now.
Please let everything be the same because this is hard enough as it is. Listening to her try to breathe after chasing Addie for a few minutes sucks. Seeing her lips turn purple from having ice cream because she gets cold faster gets old. And after witnessing a fellow heart mom lose her child after he had a transplant reminds me that once again there is no cure for what she has. Not even a transplant will be enough to feel safe. 75% of HLHS children make it to their 5th birthday. I hope to breathe a little easier by then.
Just another moment where I realize that as lucky as we have been, there are no guarantees in the heart land. Each moment is precious. Every giggle, smile and snuggle.