That’s what I keep telling everyone who asks. Dolly does indeed have the defect we originally thought she did. You can read about it HERE. It won’t be a ‘one and done’ (as in one surgery and we’re done) fix like we had hoped. She has a single ventricle and TGA. Bummer. We had prepared ourselves for that though. We didn’t go into this adoption blindly. We know the odds for a child with this diagnosis.
Here is what hit me kind of hard. Dolly doesn’t have an open PDA. Her pulmonary valve is clamped down so hard in her little heart that the pressure on her lungs looks to be high. This has likely caused lung damage. Unless we can reverse some of that damage, unless we can heal her lungs, as it stands right now… she is inoperable.
Yes, that word was used today.
In my head, I immediately panicked. I looked over at FPD, who was holding Dolly at the time. I watched his eyes fill with tears and we both lost it for a moment. If you don’t know us well, you wouldn’t have seen it. I know FPD like I know myself though, and I could tell we were both there. No one wants to hear the word inoperable. Then I kept hearing the word ‘palliative’ being thrown around. For a moment, the former heme/onc nurse in me panicked. NO! Palliative=end of life. We can’t lose our little girl, not when we’ve not even begun to fight.
Then, I took a deep breath. Palliative for Dolly means giving her the very best quality of life so that she can grow, even if we can’t fix her defect. The reality is, she is living right now. She is happy. If we can slow the progression of her heart disease so that she can continue to be happy, then we’re doing what we can. I need to put one foot in front of the other. One step at a time. There are SO many steps before we even discuss the end of her life.
I texted our pediatrician as I left the children’s hospital. I wasn’t even at the check out desk of the Specialty Clinic before she was calling my cell phone. Can I tell you again how loved and supported I feel by Dolly’s doctors? SO loved. Dolly’s doctor was audibly sad. Actually, she might have been more sad than I was. She wanted this to be easy for us. It won’t be. We wanted that too, but it just isn’t to be. FPD and I knew that asking for a misdiagnosis was like buying a lottery ticket, you may win big, but likely, you will end up just the way you started.
We started with a daughter we adore, at the end, that is exactly what we still have.
We consider ourselves big winners already.
It really is life changing in a way I can’t explain though. In one moment we will never be the same. But, I’ve already had those moments. I stepped off a plane in Ghana, and in one moment, I was never the same. I brought home Bubbly, and in one moment, we were never the same. We brought home Giggles and Shy Guy, and in one moment, we were never the same. The list goes on and on. Dolly has changed us. Her heart disease has changed us.
Here’s how much it has changed us…
This was written by ShyGuy. The boy that I wonder about constantly. I wonder if he feels connected to us. I wonder if he is really part of our family or if he is just bumping along, unappreciative, except for the physical things he receives from us (ie his iPod). That’s apparently not the case. In one moment, one baby changed his world.
Can you read it? The second thing he is thankful for, aside from his house (which we apparently keep at the right temperature), is his baby. Because…
We can fix her heart.
Again, in one moment, I am changed.
who is thankful for broken hearts and how they heal, both physically, and emotionally.