Much Deserved R ‘n R

Hope had a quiet day getting some much deserved R ‘n R while Mom worked and Dad hit the books. But not before we donned our costumes to match Little Hope’s Tin Man from Sunday. Hope is going to spend a few days still intubated and heavily sedated to help aid her recovery so we don’t expect much change until closer to the weekend. Her head is pretty swollen because her body needs some time to adjust to the new plumbing. All her oxygen-depleted blood from the chest up will now flow passively down to the lungs (meaning it’s not “pumped” by the Heart). Our lungs have relatively low blood pressure (~8-10) and can handle this, but the first few days the body typically shows some visible congestion in the form of swollen bobble heads on the babies. This is totally normal and unfortunately also accompanied by wicked headaches. Glenn’s are notoriously cranky babies for a little bit after surgery for this reason. In Hope’s case, they are going to keep her pretty heavily sedated to help her through these first few days.

Hope will remain temporarily deactivated on the transplant list until she has recovered from surgery sufficiently to be able to withstand another heart surgery. This is at least 48 hours post-op, it they’ve prepared us that nothing about Hope’s path has followed any norms and it may take her more than 48 hours. Maybe she’s following the yellow brick road in her dreams? With all the sedation she’s on, you can guarantee she’s at least having some trippy dreams!

18 thoughts on “Much Deserved R ‘n R

  1. Love all the pictures and especially appreciate the attitude you display in handling every new situation that comes your way.

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  2. So happy to see you enjoying Halloween, great costumes. Imagine Hope’s thoughts waking up to see Dad as a munchkin!! Still sending prayers and hugs.

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  3. So very happy the surgery went well!! Between the surgery, medication and seeing Dorothy and an over-sized Munchkin, Hope must definitely feel like she is in Oz!

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  4. How you keep your ‘balance’ is only through God’s Grace. To think it’s been 3 months since little Hope arrived and rocked your world is amazing. Thanks to this blog, there is a whole world of people following Hope’s progress and pulling her through with our prayers. And those prayers include her amazing parents. Praying you ALL through the rest of the week.

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  5. I loved the pictures of all 3 of u. Watching ur family work, & pull together & make the best of all life has thrown at u, brings joy to my old heart. I love u all & pray daily for a new miracle to be given to u. Please give Hope my hug & kiss. I will quietly watch & read ur blog. Enjoy this season of Thanks. Dad

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