Update #7 on Isabella Rose - April 5, 2006 - 56 Days' Old - Gestational Age 32 weeks + 5 days

It wasn’t 24 hours after my last update, that Isabella took a small step backward. After six days on nasal cannula, she “pooped out”, as the nurses say, and was placed back on CPAP to provide her with subtle, yet necessary pressure to remind her to breathe. Isabella’s little face is once again hidden behind lots of tubes and velcro strips, but she’s getting the help she needs and that’s all that counts.

She has grown consistently for the past few weeks and now weighs 1,315 grams, about 2.9 pounds. Steady weight gain is an important indication of Isabella’s progress since most preemies born at 24 weeks develop feeding issues. She did develop a mild case of reflux this past week and oddly enough, as though she was a middle-aged bachelor living on chili dogs and beer, Isabella's reflux is treated just the same - with a daily dose of Zantac. Even with that, we are thrilled that she has avoided other serious problems thus far, and tolerates her feeds of 25 ccs, every three hours, just fine.

Because she is back on CPAP, we cannot do Kangaroo Care, which frustrates me more and more every day. As Isabella gets chubbier and less fragile, my need to hold her grows more intense. It’s been almost two months since I carried her inside me, and as time passes, it breaks my heart every day knowing that the voices she hears and the hands that touch her are almost always not mine. I am tortured that she might be lying there day and night, frightened by the sounds and the noises that surround her. As she curls up alone in her man-made womb, does she long for someone to hold her, rock her to sleep and help her not be afraid? And when it’s time for me to leave each day, and I slip my finger out of her grasp, does she feel abandoned? I have come to accept that everyone right now gets too little of my time – Jade spends more hours with her wonderful, new nanny, Ydalia. Patrick gets far too many of his dinners delivered by a guy on a bike. But they’re both resilient, tough and understanding. What keeps me up at night is that Isabella won’t recover from a mother that couldn’t stay with her morning, noon and night.

Isabella’s doctors rotate every thirty days. It is a maddening process for a parent, like breaking in a new pair of shoes just when the old ones start to feel good. Isabella’s doctor this month is Amy Presti, a tall, intense brunette who floats around the NICU in hip maternity jeans and shirts that barely hint at her condition – she’s eight month’s pregnant. She’s never in scrubs or adorned with the ubiquitous stethoscope around her neck. If you look at her quickly, you might mistake her for a NICU mom, except she’s always smiling. The nurses told me that Dr. Presti was very aggressive in her treatment of preemies, and she soon proved that. On her first day, she decided to take Isabella off CPAP and give her the chance to breath unassisted. Isabella lasted thirty minutes before she became apnic, meaning she forgot to breathe – so back on CPAP she went. On her second attempt, just this morning, Isabella lasted for ninety minutes before her breathing became rapid and shallow. She’s back on CPAP now, but Dr. Presti’s experiment showed that Isabella has made progress breathing on her own.

Each doctor has his or her own style of care. Some come sit with me by the isolette and answer every question in detail and with patience. Others give me a “drive by” consultation – I flag them down in the hall, spurting my questions like rapid gunfire before they become a white-lab-coated blur, off to save the next baby. I fantasize about building the perfect “Robo-Doc” for Isabella, made of Dr. Frayer’s patience, Dr. Perlman’s experience and humor, and Dr. Presti’s aggressive nature, all wrapped up in George Clooney’s body. George would sit at Isabella’s bedside 24/7 – she’d be his only patient. He would develop innovative preemie therapies just for her, call me with hourly updates on her condition and give me a pedicure in the NICU lounge, whenever I asked.

Until that’s possible, I’m happy to have a team of experts that complement one another perfectly, even if I need a checkered flag to talk to them.

The pictures this week show Isabella back on her CPAP, and holding on to Daddy’s finger with both her hands. She loves that!

We couldn’t ask for better friends. Thank you all, so much, for continuing to send us good thoughts, great emails, and incredible support.

Much love,
Marcia, Patrick & Jade