Update #10 on Isabella Rose – April 30, 2006 – 82 Days Old – Gestational Age: 36 weeks + 2 days

Just in case we had forgotten how day-to-day Isabella’s condition could be, this week provided another terrifying reminder.

On Monday, I called the hospital on my way to see Isabella, and Peggy, her nurse told me I should bring in some clothes. “We need to get ready for Thursday”, she said. “Why, what’s happening Thursday?” I asked. “They’re sending Isabella home”, she replied. “What?!” I screamed. I hung up and called Patrick, but couldn’t reach him anywhere, so I finally sent him an email, and headed off to Baby GAP to buy out the store.

The last we had heard, it would be weeks before Isabella would be discharged, but her steady progress had made her a “feeder and grower” who required no other treatment or specialized care, so they were confident that it was time to let her go. For the next day, we ran around making all kinds of plans for her homecoming. We made lists, giggled at our lack of preparedness and leaked the news to some of our family and friends. And most importantly, we finally told Jade that she had a sister, and showed her pictures of Isabella for the first time. Patrick was especially nervous, more than I had ever seen him before. “She’s only four pounds”, he said to me over and over again Monday night, “can’t they think of another reason to keep her a little longer?”

We’d been told that each day in the NICU costs about ten thousand dollars, so Tuesday morning I bounced over to the hospital feeling like I had won the lottery, and my prize was Isabella, our million-dollar baby. The doctors started preparing her discharge papers for my review, gave me a prescription for her vitamins, and made sure I had chosen her pediatrician. The other mothers in the NICU started handing me their phone numbers and email addresses so we wouldn’t lose touch, and the nurses flocked over one-by-one with gifts.

Tuesday afternoon, Dr. Lee, Isabella’s ophthalmologist, arrived for her second post-op exam. I wasn’t worried since he had told me last week that her ROP had regressed and he was very pleased with her progress since her laser surgery. “Her right eye looks great”, he said, “but she’s developed a rare complication in the left eye”. Dr. Lee went on to explain that a small line of scar tissue had formed across the retina in Isabella’s left eye. Without treatment, there was a good chance the scar tissue would advance and pull on the retina, detaching it from Isabella’s eye, resulting in total vision loss. The treatment for this would be invasive eye surgery, a procedure I now know to be too disgusting to describe. Dr. Lee said he would return on Thursday to reassess her condition before making any more decisions, and that he would be joined by Dr. Lopez, his colleague from Columbia Presbyterian, a specialist that would perform this more critical surgery, if she needed it.

Early Thursday afternoon, Dr. Lee arrived with another doctor, also Asian, also male, also called Dr. Lee, and like some bad joke, he began his consult with me. “Hi Mommy. Unfortunately, Dr. Lopez will be in surgery all day, and won’t be able to see Isabella. She’ll need to be transferred up to Columbia tomorrow so he can take a look at her there. Oh, yes, and uh, I’ll be going away tomorrow for a week, so Dr. Lee here will be covering for me while I’m gone. If the baby needs surgery, she’ll stay at Columbia and Dr. Lopez will follow her condition until she is released to go home, in which case you won’t be back here. If she doesn’t need surgery, she’ll come back here and Dr. Lee, not me, but this Dr. Lee, will continue to monitor her. Or, Dr. Lopez may want to see her again next week, in which case she’ll need to go back to Columbia and then he’ll be in charge of her care. If she does need surgery, I would expect that it would happen some time late next week, perhaps Friday. Have you got all that?”

Dr. Lee #1 and Dr. Lee #2, and no Dr. Lopez? It was all starting to sound like an Abbot and Costello routine except none of it was funny.

I sat on the windowsill next to Isabella’s bassinette trying to process this mountain of unexpected, troubling news while Dr. Lee #1 began his exam. As I watched him, I tried to imagine what Isabella was seeing rom her end. Coming within an inch of her face was Dr. Lee’s. His magnified eyeball peered at her from the other side of his exam lens, his elaborate black headgear strapped to him like a medical miner shining an obnoxiously bright light into the caves of her tiny eyes. Isabella couldn’t look away; like in the movie “A Clockwork Orange” her lids were held open with clamps. She screeched in pain as I, sitting just two, helpless feet away, felt my insides twist and melt.

At the end of the exam, Dr. Lee said he felt strongly that another “clean-up” laser treatment might stem further growth of the scar tissue and avoid surgery; it was scheduled and performed later that afternoon.

Isabella’s ambulance arrived the next day, Friday, at five in the afternoon to take us to Columbia. Patrick and Rob, the emergency medical technicians (EMTs), her “transport team” as they are called, wheeled Isabella’s infant rocket ship into her room. This incredible piece of technology is a self-contained NICU-on-wheels, complete with a built-in ventilator, monitors, emergency oxygen, and a heated capsule, just the right size for Isabella’s little body. Not knowing if we would ever return to this NICU again, the doctors and nurses gathered around to say goodbye. “Good luck - she’s already a miracle!” said one of the nurses. “We’ll be thinking of you, let us know how she’s doing,” said another. “Don’t forget my pictures”, reminded Dr. Perlman. After 80 days sheltered in this sanctuary of care, these doctors and nurses had become the connective tissue between our daughter and us. We relied on them for everything; we didn’t make a move - not even a diaper change - without consulting them first. She was as much their baby as she was ours, and I wasn’t ready to let them go. Dr. Frayer appeared next to me and placed his hand on my shoulder. “How are you doing with all this?” he whispered, but that was all it took. I threw my arms around him, and held on. “Thank you for everything” I said, as my tears started to fall on his white coat.

“C’mon mommy we have to go”. It was Rob, the EMT already pushing Isabella’s capsule out of the room. “Take care of yourself ” said Dr. Frayer.

I will never forget how much those last two minutes of his time meant to me, how much it held me together when all I wanted to do was fall apart. As we walked down the hallway, I glanced back through the doorway of Room 409 and watched as the doctors moved on to assess another sick baby.

Early Saturday morning at Columbia’s NICU, Dr. Lopez examined Isabella, and after a few short minutes, pronounced that no surgery was needed – for now. Patrick and I hugged each other, relieved that Isabella had made it over another hurdle. Dr. Lopez will check her again on Tuesday, and many more times over the next month, until he knows for sure that her eyes have stabilized. Until then, Isabella is back at Cornell where she’ll hopefully stay until she’s ready to come home.

Ironically, her biggest problem besides for her ROP is the medication they use to dilate her eyes for each exam and procedure. While needed to help treat her vision, the medication has a severe, yet temporary effect on Isabella’s heart, dropping her rate to dangerously low levels for about 10 hours after it is administered. It mostly happens when she takes her bottle, since sucking, swallowing and breathing is her biggest trick right now. Even with that, her doctors still considered sending her home on a monitor that I could have used after her eye exams, during her feedings. “That way you’ll know if her heart rate is dropping”, her doctor said, as if that would somehow bring me comfort, “and you can always try CPR if you run into a problem”. “A problem? You mean the tiny little problem I might have if her heart stops beating for a few seconds? Is that the kind of problem you’re referring to?” I said incredulously. The doctor nodded. I told her she was nuts, and there was no way Isabella would be coming home under those conditions.

Having switched Isabella’s vision issues back and forth from the “problem column” to the “problem solved column” too many times to count over these last few weeks, I have given up trying to guess which way this might ultimately go. Until then, a newly assembled, empty bassinette sits in our den, where I don’t have to look at it very much.
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Isabella now weighs four and a half pounds, and one of the attached pictures actually make her look chubby. The picture of Patrick nuzzling her nose is one of my favorties from this week, and the third picture shows how they transported her between hospitals, in her little rocket ship. Enjoy and thank you for staying there with us through another week.

Much love,
Marcia, Patrick, Jade & Isabella