Sunday, July 24, 2016

Sunday...

Loving a child doesn't mean giving into all his whims; To love him is to bring out the best in him, to teach him to love what is difficult. ~Nadia Boulanger 




Wednesday, July 20, 2016

Wordless Wednesday...Tiny P's Hospital Pictures














Sunday, July 17, 2016

Sunday...

What matters is LOVE...and love is relentlessly showing up for your people. ~ Glennon Doyle Melton. 



Friday, July 15, 2016

Another Day, Another Cath...

Our tiny P had her seventh heart cath yesterday, just a quick routine one this time, to get a biopsy and do a quick pressure check.
She has had so many procedures, and she knows what to expect now. She talks about it for days, and she had a lot of questions. She is so smart, and trying to figure out how to calm her fears when she understands so much can be a challenge.
She knows that when she is inpatient she already has an IV, and they are able to give her anesthesia via her IV, but when she is outpatient, like yesterday, she doesn't have an IV, so they use a mask for the anesthesia. Our girl dislikes the mask so much...they tried a strawberry scent this time, but she still hated it.
Before any medical procedure, she always takes a pre-med to help calm her nerves, and this pre-med definitely makes her loopy and happy, but it is also supposed to make her not remember anything...I usually play her a song on my phone each time while we wait, and I make it a point to play a different song every time, just to see if she will remember. She always does.

After her procedure yesterday, the cath surgeon came to visit her, and we were talking about how she dislikes the mask, and tiny P said she wanted to get an IV next time. He was surprised, but said they could try to work that out, and he asked if she had gotten a pre-med. We said yes, and tiny P said that it was spicy. He was very surprised that she remembered the med, the mask, and the music, haha. Our girl...

She did awesome, as always. Her biopsy came back as grade 1R rejection...not the 0 that it was last time, but still the lowest grade, so her team is happy. She is a champ at laying still for the four hours afterwards, and we were all thrilled that we got to go home last night!

She is not thrilled that she has to take is easy for the next two weeks, and has pretty much just decided she is not going to do it, so that should be fun...



Sunday, July 10, 2016

Sunday...

Perhaps the butterfly is proof that you can go through a great deal of darkness, yet become something beautiful. ~ unknown




Thursday, July 7, 2016

Tiny P Things...

One week from today, very early in the morning, we will check in to the hospital for tiny P's next heart catheterization...

This will be her seventh heart cath since her heart transplant, so our tiny P knows the drill and so do we...but I don't think it will ever be easy. We will always be a bundle of nerves in the weeks leading up to her cath, wondering about the biopsy results. Her last results showed zero rejection, and there is no reason to think that this cath won't be smooth.


But this is the life of the heart world...

And our heart babies do well, until they don't. And it often happens that they don't very suddenly, and we hear the stories of kids we know in our heart circle who go into their cath, expecting all to go well, because it always has, only to get the very worst news. It shakes the parents...it shakes us all. All of us in the heart community rally around the tiny, fragile, fallen warrior, and all of us lift up our fellow heart parents as best we can, helping to shoulder their burden...but in the back of all of our mind, we are wondering when it will happen to us, and we are wondering how we will handle it when it does.


And then we go home, and we grab our tiny heart warrior up, and we hold them, and we smell their head, and we feel their warm body, and the beat of their heart...still strong, still steady.

We hold our tiny P a little closer, a little tighter these days, the days leading up to surgery. We always say, a little jokingly, it's JUST a heart cath, it's nothing, it's our seventh time since transplant so obviously we're pros...it's the simplest of procedures. But, the truth is, no surgery is simple for a heart kiddo, and two hours under anesthesia is a big deal for any kid. We are old pros at this, but it will never, ever, be easy...