Monday, November 5, 2007

NICU rhythms

After five days, we're slowly readjusting to the unique rhythms of the NICU. It's a place of paradox: Both peaceful and stressful, miraculous and tragic. No one wants to be there, but there's nowhere you'd rather be considering the circumstances.

We forgot how wonderful it is to hold a baby in our arms. We love Hope's soft skin, running our fingers through her auburn locks, staring straight into her eyes and wondering what she'll look like tomorrow. Best of all, we can gaze into her face without a mess of tubes, wires or oxygen apparatuses. Because he couldn't breathe without oxygen, we had unencumbered views of Will for about 10 seconds after his delivery and again when he died.

So that's been such a blessing with Hope. It feels so right to hold her close and whisper ga-ga-goo-goos. It's so tranquil you can almost forget that two of the letters in NICU stand for "intensive care." But you can never let your guard down. You know you shouldn't, but can't help it: One eye always is focused on a screen showing Hope's heart rate, breaths per minute and oxygen levels throughout her body.

That's the duality of the NICU: Utter relaxation peppered with frequent worry. If her oxygen levels fall below 88 percent, a persistent ding-ding-ding alarm sounds. If it falls below 75 percent, it changes to a jarring DANG-DANG-DANG and the nurses come quickly.

Fortunately, there's less cause for worry these days with Hope. She seems to be doing well. She's drinking breast milk from a bottle and the amounts increase daily. Her heart abnormalities haven't necessitated intervention. She's about a half-degree away from being moved from a warming incubator to a crib. And docs are tantalizing us by sprinkling phrases like, "When you take Hope home ..." in conversation.

We haven't mustered the courage to ask when that might be. We're big into jinxes and that seems like the ultimate no-no. And Hope still has work to do. One of the things about hanging out with doctors 10 hours a day is you learn scary words like "Tracheomalacia." Basically, that means Hope's trachea -- the windpipe -- is a bit floppy and not fully developed. It goes away with time, but it causes her to make wheezing motions. Also, the girl's got to start chowing down. She's lost about 3 ounces since her birth, which isn't yet a cause for concern. And neither us nor the doctors know whether her genetic condition will complicate things.

Until then, we wait and count our good fortune. We prayed like hell we'd never have to be back. Now, we miss it instantly when we leave.


Kimberkoz said...

Hope! You are so precious, you bring tears to our eyes.

Mo and Joel, of course you know that Jeff and I are praying like hell that Hope gains a little weight, moves to a crib and comes home soon.

We love this blog. The videos are so wonderful. Thanks for letting us share these moments with Hopie that put into perspective what's really important in life.

Love, Kim and Jeff

Anonymous said...

We love seeing Hope's gurgles and the three of you together. Those are such precious moments. Keep them coming. : )

As parents of a child with a different genetic condition, we have a tiny inkling as to the stress you're facing. As Mo knows, our Liz has similar growth restrictions and has endured a number of health issues as well. I can already tell that Baby Hope is strong in heart and Will.

Our thoughts and prayers are with you constantly.

Take Care of Yourselves. Try to eat and rest when you can - because Baby Hope needs well-rested parents.

Lisa, Brian & Liz Hedger

L said...

Joel and Mo,

Hope is beautiful. She really is a captivating baby girl.

Glad that she had a good first week with so many accomplishments.

All of three of you remain in our thoughts and prayers.

Leslie and Steve Pardo