No More Achy Breaky Heart

Hope finally ditched her achy, breaky heart in the wee hours of Monday morning. The surgery team literally tossed her old heart in a bucket and sent it down to pathology where it will be studied and go in a library of other baby hearts – kind of creepy, but cool! Her anesthesiologist told us that Hope is a BEAST – it took 800 mics of fentanyl to keep her comfy during surgery – on top of general anesthesia. For reference, if that dose was administered to John, a 105kg adult, he would be down for the count and need a breathing tube for sure! We’ve tried to tell them that she has quite a tolerance for sedation and now they finally believe us!! The first 72 hours post-transplant have been absolute pins and needles because the team is watching for hyper-acute rejection, which Tuesday afternoon we got a scare that she had. A few hours later we found out that the test was a false positive. She had a lot of bleeding during the transplant and received a large amount of blood products to compensate, which meant she was swollen like a stay-puft marshmallow baby – she was so swollen she couldn’t even really open her eyes!’ She was slow to let go of her fluids, which meant she couldn’t extubate with all that fluid on her lungs quite as quickly as they wanted. They were ready to extubate her today, but ran into a snag when the surgery team went to remove her pheresis catheter, which she no longer needs. Her PIC line is too close to her catheter line and they are worried pulling her catheter will disturb her PIC so they want to be extra careful and do the procedure in the OR under fluoroscopy (basically real time x-ray) so they can watch the extraction. So they need to wait to extubate until they are done with that – they have her scheduled for tomorrow morning and then extubate tomorrow afternoon. Her lungs didn’t look perfect this morning so they will do more CPT (chest percussive therapy to open her lungs) today and she’ll just be in even better shape for extubation tomorrow.

It’s been surreal to watch her monitors all change to new normal levels with 100% oxygen sats (vs 75-85% before) and 80-90% profusion (vs 30-50s happy and teens/twenties angry). And we haven’t even mentioned that she is a totally different color – she is PINK! It’s been an unbelievable week with Mom and Dad trying to balance work, school and transplant all at the same time. We are very much looking forward to a quiet weekend with no surprises from Hope!

Below are some pictures from before and after transplant!


After 15 hours, we can finally go see her!!

A little swollen & a lot of hands on deck (but still fashionable with my one slipper on)

13 thoughts on “No More Achy Breaky Heart

  1. she Is a miracle sent from above! I know she will take her new heart and make it worth a lifetime of fun and happiness!
    Praying she will get some comfort soon! 💞

    Liked by 1 person

  2. What an amazing little girl with an incredible fighting spirit she has! Go Hope!! Addie asks about you daily (sometimes hourly😀), she’s sending her love and hugs your way and so are we!!!


  3. It’s amazing that this soon after surgery, you can already see the impact of Hope’s new heart in her pink coloring and vital signs! I continue to pray for the special family who chose to give life to other babies during their greatest tragedy. And I pray that you’re soon posting a picture of Hope at home in the comfort of her own crib 🙂


  4. God is good! Praying for quick and strong progress for Hope, for consolation and grace for the donor’s family and in thanksgiving for the great gift that your family has been given (and our gift of a beautiful cause to pray for). I’m so happy for your family. Hope will probably never know how many lives she’s already touched.

    Liked by 1 person

  5. Praising God for the answer to a lot of prayers. Wishing Hope a speedy recovery! Continual prayers for you and your family as you move on to the next phase of Hope’s amazing life. Prayers for the family that lost their loved one but grateful for their gift! God Bless!

    Liked by 1 person

  6. Makes my heart feel good to hear such good news. Thank you for the pictures. Sending love & prayers for continued healing., hope for easy weekend.


  7. LOVE the t-shirts! Team HOPE is awesome! And those eyelashes on Hope – looking at the tubes and wires everywhere would freak any parent out but you two – that’s where hop0e gets her strength – and tenacity!! This has been a long awaited post – much relieved for everyone!

    Liked by 1 person

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