Hope

Every nurse in the NICU seems to be named Katherine. In the 9 days we've been there, there have been a couple of Kates (which may be short for Katherine) and two Megans, but otherwise - all Katherines.

So when I stopped in this morning to check in on Harper and drop off milk and our new nurse introduced herself as "I'm Katherine," I stopped just short of saying, "Well, of course you are!"

Going to Paul's Ride for Life, a charity bike ride organized by very dear friends, was a mixed blessing. On one hand, it was great to see them, it was a gorgeous sunshiney day, my Shea was insanely happy to be out and about, and it was a relief to be out of the NICU.

Then the guilt and sadness began to hit. A week ago I was in the hospital, having a baby. What was I doing out, without my baby? How could I have left her all alone at the hospital? Which led down the dark path of thinking about whether she has enough awareness to really know I was there or is comforted by me in any event..

So it was a little bit of a relief to return to the weary darkness of the NICU, to hold my girl. To let Shea meet his baby sister again and watch him learn the joy of a tiny baby clutching his finger for the first time. To watch her open her eyes and wave her arms, like any newborn baby, and feel sure that she was focusing on my face. To realize for the first time, I want this baby.

Shea holding Harper's hand

So here's my new place: I really want to bring Harper home and treat her as much like a normal baby, like a member of our family, as we can. I don't know whether Harper will live past infancy or if she'll be here 30 years from now. I don't know what her prognosis is in terms of whether she'll respond to treatment, surgeries, interventions, etc. I don't know how that prognosis will inform decisions we'll make related to her care. I honestly don't know how hard it will be or if we can handle it.

But the only way I know how to make this work is to be the kind of mom I know how to be. One who snuggles and snoozes with my baby. One who sings and reads to my children. One who delights when they make new strides. One who travels with my family, to try to introduce them to the world beyond their own doorstep.

Will Harper have the ability to enjoy or appreciate any of that? I have no idea. But I love her and want to incorporate her into our family. The family that Lou, Shea, and I have built. I want whatever time she has on earth, whatever quality of life she is able to have, to be surrounded by us loving her.

As Shea sat on the couch tonight and told me a long, imaginative story about a dragon beach he had visited and gave me a huge hug, I felt sad that I would never get that from Harper. But I could imagine her snuggled in my arms as Shea told me that story. And I could imagine getting excited about a vacation with Shea and Harper together, even if she won't get the same things out of it that he will.

Step one, get Harper the heck out of the NICU. She's still de-satting up a storm, but is off the high flow oxygen. Trying another dose of Lasix, to see if that helps. And because she's losing some weight, they've added some high calorie formula to her breast milk to try to boost her caloric intake. But she's generally stable, handling her food just fine, continuing to improve her sucking.

Lou and I are agreed - barring some major change in her condition or new information from our consult with Dr. Porter, at the end of next week, we're going to start to push to bring Harper home. If that's with a g-tube and a monitor, so be it. If her life is shorter than it would be in the hospital on a respirator, so be it. If it is the first step in long series of surgeries and interventions, so be it. But we need our baby home.