Update #5 on Isabella Rose - March 21, 2006 - 42 Days' Old - Gestational Age 29 Weeks + 2 Days

Isabella is such a bore! Boring, boring, boring…and we couldn’t be happier.

This week, one of her many doctors, a sweet, brilliant woman with a thick Polish accent who insists we call her by first name only, “Anita”, told me that Isabella is “the best 24-week old I’ve ever seen”. That's our girl!

Last Wednesday, Isabella’s eyes were examined by an ophthalmologist for signs of a disease called Retinopathy of Prematurity (ROP), a disease of the retina which involves abnormal retinal vessels that grow mostly in an area where normal vessels have not yet grown. It is divided into five stages, with 5 being the most severe. Timing is an important factor
with ROP; the disease can advance very quickly and delayed treatment greatly reduces the chance of a successful outcome. ROP is caused by many factors associated with preemies, including high levels of supplemental oxygen, something that Isabella needed only briefly. Still, like many preemie conditions, babies like her born very early are afflicted the most. Stevie Wonder was a preemie and he is blind because of ROP. Our amazing little girl has Stage 1 ROP and we've noe been told that in the worst case, she may need just a great pair of Armani reading glasses to get by.

There is so much about her now that makes Isabella more of a “baby” these days than a preemie. For the first time last week, when Patrick opened the door of her isolette and said, “Hi Isabella, it’s Daddy”, her gaze suddenly shifted towards his voice - I think she may have even winked at him. She now clocks in at two and a half pounds, twice what she weighed at her
lowest point a few days after she was born, a mere six weeks ago. Isabella can tolerate much more human touch now, but we still can’t do kangaroo care until she is off her CPAP. Instead, we reach inside her little plastic world, grasp her hands in ours, or cradle her legs as she sleeps. If we’re lucky, sometimes she’ll shift her position and reach out her hands, once again looking for our fingers – or at least that’s what we tell ourselves. It’s good to feel she needs us for something.

On those rarer occasions when she’s upset, Isabella manages to squeak out a soft little whimper - it sounds more like a cat’s meow than a baby’s cry, but it suits the scale of her tiny body just fine.

Today, I stroked her cheeks for the first time and she didn’t say a word about it – hopefully it won’t be long before we can kiss them.

The doctors and nurses refer to all of the NICU parents as “mommy” and “daddy”, as in “She’s tolerating her feeds well today, Mommy” or “Her x-ray looks okay today, Daddy.” This really bugged me in the beginning. It made me feel invisible, and by
extension, made me think that Isabella was just another baby to them. I could not have been more wrong. Lynn, a maternal, gale force wind of care in the NICU with over 30 years’ experience, handed us some “Isabella” stickers the other day – she said she always checks out the store racks for the names of “her kids”. Another nurse, Maria, brought in two beautiful, handmade, elaborately decorated and personalized cards that she whips up every so often. They now adorn Isabella’s isolette. Every baby with an open-ended reservation in the NICU received two similar cards from Maria that day. Weeks ago, we came in to find Isabella sporting a flirty knit, ruffled cap, made just for her little lemon-sized head. We still don’t know which nurse did that for her.

Some nurses call Isabella “Izzy” others prefer “Bella” and in the beginning, a few called her “Soy Nut”, because that’s even smaller than a “Peanut”, or so I was told. Some insist Isabella prefers laying on her belly, others swear she does better on her back or right side. One of my favorites nurses, Amy, cried along with me when I first held Isabella. And when her breathing tube slipped out while I was holding her in my hands for the first time, causing her heart to stop beating for a few seconds, it was Lynn that got my heart beating again with a giant bear hug.

The charge nurse, the one whose job it is to hand out shift assignments, told me that the nurses jockey for position to take care of Isabella. They call in before their shift to claim her, or write their name on the list next to hers the day before. One nurse even told me how irritated she was that another had been “hogging Isabella all week”. I laughed at that story, but moreover have been so touched that they find her almost as special as we do. I now understand that while their parents may be forgettable, every kid in the NICU is special to each one of those nurses. They are a dedicated tribe of ferociously talented
women that acts as surrogate mothers, medical jargon translators and family counselors, in addition to their other duties. They cheer with us when our kids breathe over their ventilators, and when a scary complication arises, they comfort us with stories of other 24-weekers that now attend Harvard. The doctors may be the generals, but these nurses are the foot soldiers, winning the day-to-day battle to save Isabella’s life and that of every other very special baby in the NICU, one 12-hour shift at a time.

Enjoy the pictures - the last two are from this past week, and the first shows Isabella when she was half her current weight. I thought you might find it interesting to compare.

Thank you all so much for being there for us every day.

Much love,
Marcia, Patrick, Jade & Isabella