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.
*funny*
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!
Oh Krista, lovely pics! My heart hurts for everything your whole family is going through.
Many prayers your way!
Beautiful pictures! My heart aches for you too, just like Jessica said. We are praying!
Wow! There is so much to process. Your girls are all beautiful. Praying for you.
Krista, When I pray for Annabelle I pray for the other family too. The family that will be making the most difficult decision to give the gift of life to someone else s baby. Try to let this all rest in the Lords arms, he knows what you and Annabelle need.
God Bless…
Aww, I love the polka dot shirts. Such a tough thing to think about…the other family. Thanks for the reminders to treasure every moment with our children.
Just like the others already said, my heart truly hurts for you. Praying for your family and for good health for Annabelle.
Continuing to pray for Annabelle and your whole family. I am constantly reminded in my own life that God sees the BIG picture , we don't ,HE knows what is going to happen already. It is good to know as a christian that our future is in His hands , that He is with us always. God bless you
Continuing to pray for Annabelle and your whole family. I am constantly reminded in my own life that God sees the BIG picture , we don't ,HE knows what is going to happen already. It is good to know as a christian that our future is in His hands , that He is with us always. God bless you
Krista,
I will pray for Annabelle. Whatever happens, NONE of it is outside the will of our heavenly Father. The Bible says His eyes roam the earth, to and fro, to watch those who love Him. And what a testament your faith is now! How closely He holds Annabelle to His heart! As much as you love her, He loves her a zillion-kabillion times more….and the baby who may give her a new heart, too.
May God bless your family richly. You are in my prayers.
You have such a tender loving heart, Krista…
Krista, thanks for sharing from your heart about the heart two precious children will share. One family will give the gift of life to another. What a picture of Christlike sacrifice.
I love the pictures. Anabelle looks adorable.
Your pictures are beautiful, and my heart hurts for your family and everything you're going through. I'm praying for God's timing and for your baby's new heart. God bless you.
Krista, I've said it before but can't say it enough. You are such an inspiration to me.
I hate to admit I hadn't really thought much about the other family,but your words touched me deeply. I will continue to pray for you – for both families.
Krista,
How well you expressed such raw and painful reality as a mom who loves her sweet girl with her everything. I will keep Annabelle close in my thoughts, heart, and prayers–as well as you and the rest of your family. And the "other" family too.
Krista, love the pics. Annabelle is sooo cute!
Now…you know I’m praying, but when you think of that other baby, don’t think of a child who is a normal, giggling child one day and gone the next. Instead, remember Rachel, who was in an Isolette for 2 months. Her heart was strong; her brain and lungs were horribly weak. And we were never in a private room. Instead, we were always surrounded by babies in other Isolettes, some who didn’t survive. Strong hearts, but with bodies unable to continue for other reasons. One friend’s daughter was born without most of her brain. Only the medulla showed activity. When she died, donating her organs helped my friend grieve and move on, and to give her child a legacy she would not otherwise have.
Krista,
I chose your blog for the "I Love This Blog!" award. Check out Redwood's Medical Edge tomorrow (2/26/11). As a former pediatric ICU nurse, I'm captivated by your posts. Praying for you and your family.
I know other people, who have received liver or kidney transplants. They had the same mixed feelings.
Bottom line, they came to the place where they hoped their survival would bring a sense of purpose and comfort to those who lost loved ones. Your prayers for them will help.
Krista…I am praying for you and your family. You give me so much hope and inspiration, at a time in your life where I can't even imagine your pain and fears. I really liked what you posted a while back about "the other baby" when you pointed out that that precious baby was going to be called home to Jesus regardless. Think of the gift you are giving another family to have their child live on in your baby. I can't think of any greater gift at such a horrible time in their life. I pray you find peace in your own words and wisdom!
Much love, Jessica Scranton
my heart was deeply touched by this post. tonight was a difficult night with my daughter…she was just being stubborn and pig-headed. but after i write this, i'm going to go into her room, where she's sleeping, and hold her tight…just because i can. i will continue to hold you and brock and your girls in my prayers. i will also add the other family to my list. thank you for being so transparent. i won't forget what the Lord is teaching me through what you are going through.
Krista,
I admire your transparency on your thoughts of the other baby. We continue to pray for Annabelle and your family.
Since I learned Annabelle needs a heart it is always in the back of my mind that my currently healthy baby may be "the other baby". I treasure every moment with her. If I lost her I think I would get some comfort knowing others lived because she did not.