Update #11 on Isabella Rose – 88 Days Old – Gestational Age: 37 weeks, 1 day

This diary of Isabella’s fight to survive began as an e-mail to a small group of friends to update them on her progress. Since then it’s grown into so much more. After three months, it’s worth taking a look back to see how Isabella got started on her NICU Journey.

In September of last year, Patrick and I were thrilled to find out that, after months of trying, we were pregnant. When I showed up unannounced at his office a few weeks later to tell him that the first sonogram showed two sacs – two babies! – he had to sit down before he spoke his next word. “Twins?!” he said in disbelief. I could see him calculating the cost of private school tuition for three kids in his head.

As the weeks passed, my body, carrying two babies, seemed to grow exponentially. Still, I embraced each pound knowing that this would certainly be my last pregnancy. Then, on December 22nd, at 18 weeks, we lost one of the twins, a boy. It was, of course, utterly devastating – this only happens to other people, I kept telling myself. But we knew there was still one healthy baby growing inside me, so we clung to that, cried our way through Christmas, and put on brave faces for Jade as the new year began.

Six weeks later, in the middle of the night, I woke up at 2 a.m. leaking amniotic fluid. I rushed to the hospital an hour later where a nurse quickly found me an exam room in the triage area of Labor & Delivery, and the mystery of why my uterus had sprung a leak began to unfold.

“It seems to be fluid leaking from the sac of Baby B,” the resident said. Doctors always refer to twins as Baby A and Baby B. The baby located closest to your cervix – the twin lowest in your body – is always Baby A, and the other, Baby B. We knew that the baby we lost was Baby B. “We think it’s fluid from Baby B - it has a brown tinge,” she went on, “that means you’re leaking old blood from the fetus that died. If it was blood from Baby A, it would be tinged with bright pink, new blood. So at least that’s good news.” I was hanging…on… her…every…word. Good news - there was some good news in all of this.

My initial panic slowly began melting into relief until the attending, Dr. Hockstein – the doctor in charge - entered my exam room. He looked to be in his mid-forties, with boyish features that belied the stern look on his face. He crossed his arms, leaned against the wall just at the foot of my gurney, and stared at me for a few moments through his studious-looking glasses.

“Well, here’s where we are,” he began. He gave a brief review of everything the resident had told me and then said, “This is very tough call.” “What do you mean?” I asked. “Well, you’re only 23 weeks along,” he said. “23 weeks and 6 days,” I corrected him. “Yes”, he agreed, “but you have to understand that if you were to go into labor now, which is a very real possibility, the prognosis for your baby is very grim. Most babies born at 23 weeks suffer a multitude of complications, and their outcome, if they even survive, is not very good.”

“So what are you saying?” I pressed him. “Well, I just need to advise you of the position you’re in, so that you understand your choices.” “Choices, what choices? Isn’t there still I chance that I won’t go into labor?” I asked. “Yes, there is a chance, but any time you begin leaking fluid, it means your cervix is now slightly open. This could lead to an infection in your uterus. That would present a life-threatening situation for you and your baby, in which case we would have to induce you immediately.” I was hearing him, but not understanding what he was trying to tell me. All I could think of was the baby we had lost, and Patrick, back at home, waiting for me to call with some good news.

“So, what are my options here?” I finally asked. “Well, up to 24 weeks you have the option of aborting this pregnancy. That’s the law in New York. After 24 weeks, you no longer have that right. Right now you are 23 weeks and 6 days, so you still have that option, but only for a few hours.”

“Are you saying that’s what I should do?” I asked him, not believing those words were coming out of my mouth. “Well, it is of course, your decision, but yes, if you’re asking my opinion, my recommendation is that you abort. The chances of you holding onto this pregnancy much longer are not very good. And even if you go another few days, your baby will face an uphill battle. As I said, you’ll be 24 weeks tomorrow, so if you want to terminate, you need to let us know soon so we can begin preparing.” And with that, he left the room.

There wasn’t even a moment when I considered following his advice.

Dr. Andrea Dobrenis, my OBGYN, arrived at the hospital at 6 a.m. to begin her day. She found out I was in triage and came to see me right away. “What the hell are you doing in here?” she said. I laid it all out for her and without hesitation she said, “I don’t agree with him (Dr. Hockstein). I’ve had this happen many times and the patient goes on to have a normal pregnancy. I’m admitting you immediately; you’ll stay on bedrest until this is over and I’ll probably end up of inducing you!” She was trying to make me feel better and it was working.

They moved me to 7 East, the side of the Labor & Delivery Unit for all the misfit moms-to-be like me, having problem pregnancies. The happy moms and the new pink babies are kept on the other side of the floor where we can’t see their balloon bouquets and flower deliveries arriving hourly, congratulating them on their healthy bundles of joy and their perfectly functioning uteruses. There I sat, in my hospital bed, fretting over the strain this would place on everyone. How would Jade possibly understand that Mommy couldn’t get out of bed, play with her, or even pick her up? And how would Patrick, already so hands-on with her, deal with his demanding work schedule while facing more Mr. Mom duties at home?

I decided to make the best of my bed-ridden fate, and focused on the books I’d read, all the Oprah I’d watch and the birth announcements I’d get pre-addressed.

But only five days into my bed rest, just as Dr. Hockstein had predicted, my uterus became infected. They rushed me over to the delivery side of the unit and immediately induced my labor. The nurse said the doctor on-call would come in shortly to discuss everything. I was 24 weeks and 3 days pregnant. There was no turning back.

I cringed when Dr. Hockstein walked into the delivery room. Oh no, not him, I thought. I expected a lot of “I told you so”, but surprisingly, there would be none of that. The tough-as-nails, say-it-like-you-see-it doctor from triage had disappeared, and in his place was another persona. “We’re gonna take good care of you,” he said softly, and patted my foot. He told me it would be about twelve hours before I delivered, and said the neonatologist was on his way to talk to me.

A pretty, slender woman who looked no more than twenty-five, stood close to my bed a few minutes later. “Hi. I’m Dr. Suk. I’m the neonatologist who will be handling your delivery tonight; I work one floor below in the NICU,” she said. I’m just here to let you know what you can expect with a birth at this very premature stage. Do you know what you’re having?” she asked. “A girl,” I said. “Ok, well first, you should know that when the baby is born, she will most likely have respiratory issues, so we will intubate her – we’ll place a small tube down her throat to help her breathe. From there, we will need to assess her overall condition and then we will decide on a course of treatment. I know this is hard, but I need to ask you – as you know, this is a very touch and go situation – and well, do you wish us to take heroic measures to keep her alive?

This was not the kind of discussion I ever dreamed of having during labor. There was so much talk the past few days linking my daughter’s birth with her imminent death. They all made it sound so futile, so predisposed; I started doubting if we had made the right decision.

“What do you mean by heroic measures? I asked. “Well,” she offered, “if the baby is unable to do so on her own, do you wish for us to keep her alive with machines?”

“Well, yes, I mean, I don’t want her to suffer, but before you make any decisions about stopping…you need to talk to us, it needs to be our decision.” I tried to sound firm, but I was falling apart on the inside.

“Yes, of course,” she said, “I understand, so…okay then…well…you take care and I’ll see you in a few hours.” She walked away.

From there, everything moved very quickly. Patrick’s parents drove in from Westchester in the middle of the night to be with Jade so he could get to the hospital. Dr. Hockstein told us it would still be hours, but my body had other ideas.

“Doctor, I think she’s right there,” I warned him a short time later. “Oh no, it’s way too soon,” he said. But sure enough, when he checked, he saw that Isabella was on her way. “Hang on – don’t push,” he urged me, as he paged the NICU’s labor and delivery team. Dr. Suk told me later that when she and her colleagues got the page that Isabella was on her way, they raced up the stairs, taking two at a time because there was no time to wait for the elevator.

My room became a tornado of activity. People in scrubs rushed in and out, the number of nurses tripled from two to six, commands were shouted and monitors beeped – Patrick grabbed my hand tighter than ever before, leaned in to kiss my forehead and told me it would be ok. It was comfort in the midst of madness. I kept thinking how different it all was from the calm, orderly, hopeful way I had given birth to Jade two and a half years earlier.

“Can I push?” I asked Dr. Hockstein as I saw Dr. Suk enter the room. “Yes, go ahead.” A soft cramp swept over my belly, and without a sound, Isabella slid into his hands. He passed her immediately to Dr. Suk and off she went, all one and a half pounds of her. All I remember of that first, two-second glimpse of Isabella, was her small round head, no bigger than the size of a lemon, covered in blood, being whisked away. That was all I would see of her for the next five hours.

“It’s ok, it’s ok, it’s ok,” Patrick said to me over and over as the NICU doctors worked on Isabella under bright lights off to the side of the room. I knew exactly what he was saying. We both thought she was dead. We’ll have more children. We can try again.

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It is now week 13 of Isabella’s NICU Journey, and for her, it’s a lucky number.

Last Friday, Isabella’s two ophthalmologists examined her and declared that the scar tissue in her left eye was receding. “The second laser surgery seemed to do the trick,” said Dr. Lopez. “So what’s the prognosis for her vision,” I asked. “I think she’ll have normal vision,” he answered. “Normal?” I was shocked, “You mean, normal vision for a preemie or normal normal?” He laughed and said, “Normal normal.”

“That’s her ticket out of here,” Mark, a third-year resident told me when they left.

Patrick and I arrived at the hospital on Saturday, 88 days after this odyssey began and asked to see Dr. Perlman. “She’s really amazing,” he said, as we all stood, hovered over Isabella’s bassinette. “She’s broken all records that I know of for a preemie born at 24 weeks,” he went on, “She’s leaving here at least a month ahead of schedule. It’s really incredible.”

I threw my arms around Dr. Perlman. “Thank you,” I said, “for everything.” I asked him if he would mind unhooking Isabella from the monitor she had been tethered to for three months. “It’s only fitting,” I said, “you did, after all, save her life.” I watched as he shut off the alarms and pulled off her wires. Before we left, I took photos of him cradling Isabella in his arms.

How do you thank someone for saving your child’s life? I had no words left as he walked away. I will think about Dr. Perlman every day, and I’ll make sure that Isabella knows all about the first great man that came into her life.

As we walked down the hall towards the exit signs that day, with Isabella strapped securely into her car seat, we ran into Madeleine, one of her nurses. “She’s going home!?” she shrieked. “Yes,” I said, “we can’t even believe it – it seems impossible!”

“Well,” she shrugged, “that’s why they call this “Miracle Medicine.”

And so, Isabella’s NICU Journey ends here. As I write this, she is sleeping peacefully next to me, here at home in her bassinette, where she belongs. Jade will come bounding in soon from the park; Patrick is at work. This is the first time I have ever been alone with my daughter.

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We are so happy to end these updates right here,
brimming with hope.

Thank you all for traveling on this journey with us,
for keeping us strong, and for sending us love along
the way.

Enjoy the pictures of Dr. Perlman shutting off
Isabella's monitor, Jade meeting her little sister for
the very first time, and the little one herself -
Isabella - a five pound, death-defying miracle.

XO,
Marcia, Patrick, Jade & Isabella