Tiny Vessels, Big Journey

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I was just telling Stu that I really needed to blog about Norah’s surgery before the realistic memory of it has completely faded. Then he showed me some pictures of her when we first got to visit after surgery and it all came flooding back. That limp face and body with wires and stitches and bandages. Machines were beeping in the background with great meaning. One skipped beep, one extra beep and we jumped. Why is the nurse so nonchalant? Is something going wrong as we stand here with crooked necks watching a screen? It was horrible. No parent should have to see their child this way. And yet some of us do. And many see far worse.

Norah just after open heart surgery

Norah sedated just after open heart surgery

We were lucky. Blessed beyond reason, really. Norah’s surgery was quick, uneventful and successful. We had two sets of grandparents there for support. Norah had one fantastic nurse after another. And her healing, words don’t really cover how amazing that has been. At just a week post surgery the chest incision was nearly completely healed over. Her wrist, where they placed an arterial line (to carefully measure blood pressure) looks worse than her chest. Her arteries are so small that they had a hard time getting that line in. It appears they may have damaged a tendon in the process since she isn’t straightening the last three fingers on her left hand. We are working on it daily and will see a physical therapist for advice.
The first night after Norah’s surgery was rough. They had a hard time managing her pain and anxiety. The cries were gut wrenching. Relief only lasted for 30-45 minutes at a time. Norah fought the effects of the morphine. But the next morning when they removed all of the tubes and lines she was immediately calmer. And I finally got to hold my precious girl. We rocked and in many ways it felt like the first time I had held her, a bit awkward, very emotional and about damn time.

Getting to hold Norah post-op

Finally getting to hold my baby girl

The first full day post-op held drastic improvements for Norah. She was more awake, in less pain and more relaxed. She started taking her bottle again. But, as with any hospital stay, rest was elusive. Norah’s sensitive hearing and constant interruptions by hospital staff meant only short naps and no long stretches of sleep at night. In the midst of all of this pain, fatigue and anxiety Norah was a trooper. She managed a few smiles here and there. Things continued to improve so drastically over the next night and day that the whole group of us were in awe. And so it was a mere three and a half days after Norah had been fighting for her life in open heart surgery that she was discharged.
I encountered a very young brand new mom in the hospital hallway one afternoon. She was holding a tightly wrapped, tiny, screeching newborn and attempting to push an empty hospital stroller while soothing the baby. I asked if I could take the stroller for her. She paused, looking dumbfounded and panicky. It took me back like a flash to the first few weeks after Norah was born. I think a part of her would rather I take the screaming baby but she accepted my offer and we walked together back to the Cardiac ICU.
My own transition handling Norah after surgery and getting back into a routine has been much like the beginning. We cannot lift her under her arms and it’s more awkward than I imagined retraining the way we lift and carry her. That sense of constant worry is back (not that it every fully went away). I’m struggling with the balance between soothing and spoiling. Norah’s nights have been rough, with more frequent waking and crying jags reminiscent of her colic days. But she’s better every day.
Norah’s no longer on pain meds (not even tylenol). She had her last dose of Lasix yesterday. Her sutures have been removed. We followed up with her cardiologist here in Charlotte and everything looks really great! Her heart is functioning well and has relief now from the extra work it was doing. It was a bit disappointing, anticlimactic if you will, to learn that the high pressures have just been moved further out, though, to where the patches end. We knew that would be the case but it’s still hard to realize. What happens now? Well, we continue praying and hoping that Norah’s blood vessels grow with her. Even better would be if they grew faster than her. And we focus on how thankful we are that her heart is relieved. And we focus on how thankful we are that this procedure gave us everything we asked for…no complications, successful repair and speedy recovery.

Norah's incision one week post-op

Norah's incision one week after surgery

We are so proud and overwhelmed at the support system around us. I know so many of you wanted to be at the hospital with us and we felt your arms around us the whole time. Mom and Tom, and Dad and Deb were thoughtful, eager, dependable support for Norah and for us. We were well cared for, allowing us to focus on Bug. Mom made the long exhausting drive with us….again. And her handmade hospital gowns wrapped Norah in very stylish love and were a huge hit with the nurses.

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Hunkering Down

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Norah Bug

What a beautiful little girl!

I can’t believe the time has come. It feels like it took both forever and no time. As you can imagine we’re quite busy preparing so this will be short. We leave tomorrow morning for Philly. Monday Norah will have her pre-surgery appointment at 9am. That’s when we’ll find out her surgery time for Tuesday.
We make this trip with many anxieties but primarily with great hope and an amazing sense that we are wrapped in love from all directions, some unseen. I don’t even have to ask because I know all of you are hunkering down with us. Praying. Focusing on Norah’s strength, speedy recovery and the success of this surgery. Thank you!
Also, we’ve uploaded three new videos to the vodpod channel that you can find on the right hand side of this page. To strangers they are probably very boring but for those of us who love Norah they are quite captivating.