I haven’t thought about the other baby much.
Occasionally I would, but it is such an overwhelming, guilty feeling that I sweep it out of my mind and try to distract myself by thinking about the weather or something else relatively safe.
But now that the Boston option is a no-go, and we’ve waited a month and a half (they say average wait for a heart is 6-8 weeks, but it could be shorter or much longer….) I find my thoughts going to the other baby much more often.
It’s a surreal feeling to think that right now, there is a baby out there laughing and playing and healthy who will at some point and time in the next days, weeks, or months, be giving their heart to my baby. There are parents out there enjoying the giggles of their little one, tickling them, changing a diaper, and giving tight squeezes, who will be saying goodbye to their sweet child and saying okay to a gift that will give my daughter life.
My heart aches for them. I know their grief and their fears. I know them because on numerous occasions, I stood by my child’s bed with the real knowledge that the next breath she breathes could be her last. I’ve sat in a room while they did chest compressions on my daughter’s heart in hopes to keep it beating. I’ve walked into the room and seen her heart-rate plummet in seconds and doctors and nurses run to save her.
But my baby is still here. And theirs won’t be.
My hope, my prayer, is that the knowledge that their little one’s heart beats on in another, while it won’t make things better, but will bring a very small measure of comfort.
I also pray that the baby’s parents will make the most of every second with them. That they would hug tightly, love deeply, and embrace all those fun moments.
Really, these are the only things I can pray for. It is SO SO SO hard, because I REALLY want Annabelle to get her heart soon. The longer she waits, the more chance she has to deteriorate, and the sicker she is at time of transplant, the harder the recovery. But praying for a heart soon makes me feel like I’m praying for another baby to die soon. And that is such an awful, awful feeling.
I decided to write this post so I could just get all the thoughts (okay, not ALL, but some of them… there are a lot!) out of my head so I can focus on other stuff. I want to focus on getting prepared. In my heart I feel it won’t be too much longer. And I want to be ready. I don’t want to scramble to check everything off my list (I like lists…) There is SO much to do. Once she gets her heart, from everyone else’s stories I’ve heard, the next 6 months to a year are craziness with recovery, meds, doctor’s visits, and for us, the adjusting to having a baby HOME for the first time.
So here is to making lists, checking them twice, not thinking about unpleasant thoughts, and knowing that no matter what happens, God is in control and we don’t have to worry about it. Easier said than done… but true none-the-less.
As I wrote this, I took a break to check e-mail, saw a blog update from someone else, and read it.
The blog was another heart baby’s parents’ blog, who is scheduled to go for his Glenn next week. In it, Bowen’s dad talked about how sometimes he gets so busy “doing” stuff that he doesn’t take time to sit down and process and rest. The irony that I had just written how I wanted busy myself with everything that needs to be done so I didn’t have to think about it all, isn’t lost on me.
Annabelle today is doing well. Sleeping soundly at the moment. She did cough a lot yesterday, and was snotty last night, so we are on precautions again (nurses have to gown up and wear masks when they come in) just in case. They haven’t sent a viral panel yet… she hasn’t had a fever or anything.
Please pray that she ISN’T sick again, that this is just a little snot and clears up quickly.
And about the heart and timing… God’s will. Really, that’s all I can pray for at the moment. Anything else is overwhelming.
My wonderful 10-yr-old doctor (she says she’s not going to be a doctor, but a vet… er, actually she wants to run a no-kill animal shelter… but they would still wear masks sometimes right?) and my sweet 7-year-old nurse. I LOVE spending time with my girls!
RT is giving Annabelle her treatment with her dragon mask. For the first six months of her life, she HATED them and screamed the whole time. Now, she just says whatever, bring it on. Occasionally she puts her hands up there and tries to help too!
Daddy and Annabelle playing!!!
She LOVES her shaker and toys! Annabelle is becoming a professional toy player!