We understand that getting a heart transplant is trading one heart disease for another, and we understand that she will need care for the rest of her life, and that her new heart’s life-span is not that of a normal healthy heart. We also know that without a new heart our baby girl would still be in constant pain, and she would be dying. She WAS dying. Every day she was in pain. She rarely smiled, we had to work hard for her smiles. She cried often, didn’t walk more than a few steps, and couldn’t eat. She laughed only occasionally. In the morning she would ask us to put her on the couch, and she would sit or lie there most of the day. She slept fitfully, and needed g-tube feedings through the night to try and get her some nutrition and healthy weight.
Tiny P has been home for five weeks, and nothing has been the same in our lives since. Everything has changed for us, things are still changing, and they will undoubtedly continue to change for a while.
A friend and fellow transplant mom told me that she was shocked by what a different person her child was after her transplant, and I couldn’t even imagine what she was talking about…
Now I get it.
Our tiny P is not the same person that she was.
She was so sweet. She was loving, and she was the best little cuddler ever. She lived with all the gusto she could muster, she just couldn’t muster very much. She was funny, and sassy, and she loved to make us laugh. She talked so well, at a four year old level. Physically, she was at the same level as a one year old, and in many ways, even younger. She was so weak, unable to roll over or even sit up by herself. She couldn’t walk far, and she definitely couldn’t walk fast. Our girl had never run, and she could only go up the one step from our family room on a very good day. She couldn’t play much, and it made her sad that she couldn’t keep up with her brother and sister.
Tiny P is not in pain anymore. Now that she is not in pain, she is SO much happier (and so are we!)
Our baby girl is still so sweet (even on high dose steroids), and she laughs, really and truly laughs. We didn’t realize until we heard her really giggle after her transplant that she had never really laughed before.
She walks all day, and she rarely sits still anymore. She is getting faster and faster and she will be running in no time. There might be a time when I will actually need to chase her down, and I can’t wait!
And she can not only go up a step, she is starting to step up that step while standing up. She climbs stairs, and doesn’t really get tired.
She is playing. A LOT. She plays with little M and baby J, following them all over the house, and keeping up. I think little M tires out before tiny P does! She gets into their imaginary games now, and it gives us all the feelings to watch the three of them together.
If tiny P wants to sit on the couch now, she climbs up herself, and two minutes later she climbs down to go play or see what “my kids” are up to.
She is eating, and she is eating real food. She is not eating a lot, but she is not needing any additional nutrition through her feeding tube right now!
And she is being naughty…
This week I came into the kitchen after changing some laundry, and our girl was on the counter. She had pushed a dining chair over, and then used a kid-sized chair to get onto the dining chair, and from there she climbed onto the counter to get to some chocolate, because “you put my chocolate too high, mommy!”
My three year old is getting into trouble! She is doing normal three year old stuff, and she is being daring, and I have never been so happy to see someone get her little self into trouble.
The very best thing, my favorite thing, is that when I smile at her, she smiles back.
My girl smiles at me. She can smile because she is not in constant pain anymore.
This is my favorite.
My baby has a new heart. And my baby is a new person.
Nothing is the same anymore, and that’s pretty incredible.