Update #8 on Isabella Rose – April 13, 2005 – 64 Days Old – Gestational Age: 33 weeks + 6 days

Isabella has been doing some fancy footwork this week – her dance of choice is called the “NICU Shuffle” and it goes like this: two steps forward, one step back.

The forward steps have been really big ones.

For the first time this week, rather than receiving her formula through a tube jammed up her nose or down her throat (called a “gavage feed”), Isabella now drinks from a bottle. This may not sound like much to us, but her doctors are very impressed that she reached this milestone so soon. This not-so-small feat of feasting requires that Isabella coordinate her ability to suck and swallow with her need to stop and take a breath. She alternates bottle feeds with gavage feeds, allowing her time to rest in between and reserve more calories for growing. After seven days of dazzling us with her drinking abilities, Isabella now weighs 1,540 grams, about 3.4 pounds.

Isabella also moved forward this week with Kangaroo Care. On Sunday, Patrick held her outside the isolette for the first time. As Isabella slept peacefully in her Daddy’s arms for thirty beautiful minutes, the staff scurried over to “ooh”, “ahh” and take pictures.

Isabella has stopped having the “events” that plagued her for nine weeks when she would stop breathing. Now, each time we hold her or she bottle feeds, the nurse removes all her CPAP tubes and she breathes off the ventilator. Her breathing has become strong and reliable this week, and when the doctors do their rounds every morning, they describe her as “very stable”. But like a prisoner petitioning for early parole, Isabella has to show her doctors a few more days of good behavior before they will release her from her ventilator entirely. Hang in there Isabella, you’ll be breathing freely soon.

Isabella’s giant step back this week involves her vision. Her ophthalmologist, Dr. Lee, examines her eyes weekly to assess a condition she suffers from called Retinopathy of Prematurity (ROP). As I discussed a few weeks ago (see Update #5), ROP can progress rapidly from a self-correcting condition (Stages 1 and 2) to one that, if left untreated, will cause permanent vision loss (Stages 3, 4 and 5). Rapidly progressing ROP, called “Rush Disease” because it worsens so quickly, is usually associated with very extensive or aggressive growth of abnormal blood vessels. Rush Disease is often accompanied by abnormally dilated and engorged veins in the retina, a condition called “Plus Disease.”

Isabella had good checkups the past few weeks; one of the NICU doctors even told me to stop worrying about her ROP altogether. But all along, Dr. Lee offered a much more guarded view of her case. “Anything can happen with this”, he told me, and then, just this past Tuesday, it did. Standing just behind him during her checkup, I heard him say the words “Plus Disease” to the ophthalmologist assisting him. Before I had time to try and recall the little I had read about Plus Disease, the exam was over, and Dr. Lee was telling me that Isabella needed surgery in her left eye, right away – possibly that afternoon. Stunned, I mumbled something like “I thought her exam went so well last week?” as he went on to explain that she had suddenly reached Stage 3 Rush Disease with Plus Disease, and without the surgery, would lose her sight. They shoved a consent form under my nose, I scribbled my name, and then ran off down the hall to call Patrick.

Unable to fit her in that afternoon, Isabella’s surgery was performed Wednesday, right next to her isolette. They dilated her eyes ahead of time, swaddled her tightly to prevent her from squirming, and held her eyes open with a tiny metal clamp. After an hour, Dr. Lee emerged to tell me that her right eye, in just the last 24 hours, had also reached Stage 3 Rush/Plus Disease and also required immediate surgery. Standing outside her room this morning as they finished her right eye, I could hear Isabella crying from the pain. One day, when she’s reading a book to me, I’ll explain to her that we had no choices this week, just ultimatums.

Before Isabella’s surgery on Tuesday, I was able to spend a few minutes chatting with the ophthalmologist that would assist Dr. Lee. A young, serious-minded woman, she told me that her tenure at the hospital was less than a year. I asked what her involvement would be in the surgery and she told me that she would be assisting Dr. Lee in all aspects of the procedure. “Oh, really”, I said, trying to appear indifferent to her answer, “do you actually handle the laser?” “Oh yes”, she said, “I’ve done this several times”. Dr. Lee appeared in the room a few moments later and I asked to speak with him in the hallway. I told Dr. Lee that, while I appreciated that New York Presbyterian is a top teaching facility, Isabella’s eyes were not available for target practice. “However, if she wants to clock some time with the laser, I’m happy to offer up my retinas,” I said. Isabella’s vision remained entirely in Dr. Lee’s capable hands for both surgeries.

Isabella’s prognosis will unfold initially over days, and ultimately over years. In two weeks, we will know if the surgery to stem the out-of-control blood vessels and swollen veins in her eyes worked, as it does in 90% of similar cases. The other ten percent of preemies like her do not respond to the surgery and suffer major vision loss. If the surgery succeeds, she will most likely need glasses at six months old. After that, Dr. Lee tells us that around age two, “when she begins reaching for cheerios or trying to follow you with her eyes from across a room” we’ll be able to notice if there’s a problem. Not until age five, though, when Isabella can actually read an eye chart, will her vision loss be quantifiable. “I don’t anticipate she’ll be flying fighter jets”, he told me, as walked out of the NICU today, “but she has a good chance of enjoying a decent quality of life”.

Isabella’s short life has been all about percentages:

• Chance of surviving when born at 24 weeks: 50%;
• Chance of surviving an infection: 75%;
• Chance of developing learning disabilities and other lifelong complications: 50%

• Likelihood that we will ever give up on Isabella – NOT A CHANCE!

Enjoy the pics of Patrick holding Isabella for the first time, and one of her enjoying a bottle feeding.

Much Love,
Marcia, Patrick, Jade & Isabella