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.

________________

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

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.
___________

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

Update #9 on Isabella Rose – April 21, 2006 – 73 Days Old – Gestational Age: 35 weeks

Things are looking great for Isabella – literally!

On Tuesday, Dr. Lee, her ophthalmologist, examined her eyes for the first time since her surgery last week. He warned me that a baby’s eyes often look worse after 7 days, and that it often takes at least two weeks to see any progress, so I braced myself as I watched him examine her. “Ok, Mommy, things look good - she has stepped back from the ledge,” were the next words I heard him say. Isabella’s eyes are already showing regression of her ROP and Plus Disease, and although it will be another month until he can call the surgery successful, Dr. Lee told me that what he saw this week was the “best possible result we could hope for at this stage”. Even stoic, oh-so-serious Dr. Lee gave me a tiny, celebratory smile as he left Isabella’s room.

After ten long weeks of seemingly endless medications to treat her preemie conditions, Isabella now only needs drops to sooth her eyes from the rigors of her surgery. There are supplements added to the 35ccs of formula she drinks every three hours to help her grow big and strong, vitamins and minerals which a baby accumulates, for the most part, in the last trimester of pregnancy, which Isabella never reached. Isabella now weighs 1,675 grams or 3 pounds, 11 ounces, about three times her lowest weight.

But most importantly, last weekend, after 65 days, Isabella took a deep breath without her CPAP, and then another, and another, and hasn’t looked back since. As one of the doctors told me yesterday, this is the most important milestone for a preemie, the one that “puts them on the launch-pad to go home.”

We also received some “stinky” news – after weeks of sponging Isabella down, they gave it to us straight - “your baby really needs a bath!” Amy, her nurse, whipped out a washbasin the size of a cereal box, stripped Isabella down to nothing and plunked her in the warm water. As Isabella shreaked from the shock of it all, I manned two cameras as the rest of the room gathered around to watch. Amy slid Isabella’s slick body into Patrick’s hands a few moments later, as everyone giggled watching him struggle with her wriggling limbs. In a place where levity is a luxury, we all jumped at the chance to celebrate Isabella’s soapy rite of passage.

Yesterday, I got another, big surprise. Just as I opened the door to Room 415 of the NICU, as I’ve done each morning for 74 days, I heard someone say “Oh Mommy, she’s gone – we moved her to 409”. With that, Lynn, one of the nurses, locked arms and lead me to the coveted last room at the end of the hallway. There, in the farthest corner, next to a window with a beautiful view of the East River, laid Isabella, sleeping peacefully in her isolette.

They call Room 409 the “feed and grow room” which sounds like a place you put your houseplants when you go on vacation. The babies in this room are stable, pink and chubby, hooked up to monitors that hardly ever have a reason to make a sound. The nurses here handle four babies instead of just two as in the other rooms, because these preemies need so much less care. In Room 409, you hear talk about swaddling techniques, car seat installations, and what outfit they’ll be wearing for that first ride home. It’s hard to believe that just down the hall from the battles being waged in Room 415 exists this kind of OZ, where babies just get to be – babies. No intravenous lines or CPAP tubes, no ventilators or nasal cannula, no mothers crying, no priests administering last rites. They should pave the hallway between these two rooms with yellow bricks.

Enjoy the pictures of Isabella’s first bath – she’s never looked more unhappy! And another of her looking quite pleased to be off CPAP at last!

Thanks for staying with us throughout this bumpy ride – it’s great to at last feel a smoother road beneath us, isn’t it?

Much love,
Marcia, Patrick, Jade

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

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

Update #6 on Isabella Rose - March 29, 2006 - 49 Days' Old - Gestational age: 31 weeks + 5 days

Isabella was like a busy socialite this week...photo sessions, fundraisers and publicity.

Late Wednesday night, the paparazzi snuck a camera crew into the NICU and snapped pictures of her with a mystery man. Ok, so the camera crew was actually hired by New York Presbyterian, and the mystery man was actually Dr. Jeffrey Perlman, the director of the NICU. And instead of Page Six of the NY Post, these pictures will be used for public relations purposes, beginning with an April fundraiser at the Waldorf to benefit the Pediatric Cardiology Department. The point is, Isabella has done so well since her valve surgery five weeks ago, that she is now the face of outstanding cardiac care for one of the best hospitals in the world. I just hope she can find the perfect dress.

Isabella is now seven weeks old. She gets 22ccs of formula every three hours and weighs 1,240 grams, or about two and three-quarter pounds. With all that muscle she's packed on, she has finally, after four weeks, outgrown CPAP and graduated to a breathing apparatus called nasal cannula. If youve ever watched ER, youve seen nasal cannula, a thin plastic tubing that stretches horizontally above Isabellas top lip, connected to two, thin prongs placed in her nostrils. The air that gently flows through these prongs is made up of 21% oxygen, the lowest possible setting. This is the same amount found in the room air we all breathe. Isabella's lung function has come a long, long way.

The doctors were anxious to test Isabella on cannula to assess her respiratory progress, but they also mentioned another concern - babies who remain on CPAP for extended periods of time run the risk of permanently enlarged nostrils. I made them repeat that last part twice. I know I should have just been excited with her great breathing, but I was equally thrilled that her move to cannula meant she might avoid having nostrils resembling the entrance to the Lincoln Tunnel.

I spend about four hours each day with Isabella and I am constantly amazed at the level of documented care she receives. Her every move is recorded hourly at her bedside computer down to the smallest detail: the weight of her wet diapers; the number of times she stooled, including color and consistency; each time they apply lotion to her skin, every drop of formula she retains; any drop in a vital sign, to what extent it dropped, and what, if any intervention was done to bring it back up. They note the side she rested on and for how long to assure that her head isn’t misshapen, and what her mucus looked like when they suctioned her. We’ve been told again and again by Isabella’s doctors and nurses that babies born at this hospital fare better than babies born at or transferred in from others. They contend that this NICU does many things others don’t, and everything they all do, just a little bit better. For instance, this week, Dr. Perlman suggested that we bring Isabella some music. He believes in the power of Mozart and other classical composers to soothe preemies while they eat, sleep and grow. But he cautioned to only bring her single instrument pieces, such as piano sonatas, because they are generally softer, quieter compositions. Preemies can comfortably handle about ten decibels of noise – anything louder and they tend to get very agitated. Forever mindful of that high standard of care, Dr. Perlman actually has someone come around with a machine to test the volume setting on each baby’s cd player.

Every week, before I hit the “send” button on these updates, I run them by Patrick to make sure I got everything right. This week, he suggested I was being “a little too jokey”, that this is “a serious situation”. I thought about it, and he’s correct - there is nothing more serious than a child fighting to live. But after 49 grueling days in the NICU, I spent more time this week trying to gauge the circumference of Isabella’s nostrils, than I did watching her vital signs on the monitor. I think that’s worthy of a parade and some fireworks and yes, even a few stress-relieving giggles.

Enjoy the pictures of Isabella on cannula – we can finally see almost all of that beautiful, little face. Please note as a point of reference, that in the attached black and white photo, she is grasping Patrick’s pinky finger.

Thanks for keeping us in your thoughts,
Much love,
Marcia, Patrick, Jade & Isabella

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

Update #4 on Isabella Rose - March 12, 2006 - 33 Days Old - Gestational Age: 29 Weeks +2 Days

Ladies and Gentlemen…..for Best Actress in a Medical Drama, the Oscar goes to…..Isabella!

Ok, so maybe she’s not acting, but Isabella has handed in another great, very dramatic performance this week.

She started off with plenty of gusto. On Tuesday, the doctors were able to remove Isabella’s “deep line”, which snaked internally from her left arm all the way to her heart, delivering both nutrition and medicine. These deep lines, while crucial, can be very dangerous. They are highly susceptible to infection and course “deep” inside the body, carrying an infection to those parts where it can do the most damage. The nurses told us to be thankful that it was out of her and we were.

Also on Tuesday, Isabella had a head sonogram that showed that her brain bleed, which occurred shortly after her birth, was resolving itself. Almost all preemies have brain bleeds (called Intraventricular Hemorrhages or IVHs) that are graded on a scale of 1 to 4, with 4 being the most severe. Isabella had a grade 1 bleed, which usually resolves itself with little or no permanent damage; a grade 4 bleed almost always involves a serious permanent disability. An IVH is untreatable; the doctors can only wait and see to what extent it resolves itself or worsens over the first few weeks of a baby’s life. When Isabella was two days’ old, her doctor told us that he was “thrilled” with her Grade 1 IVH, since very small preemies like her usually have the worst bleeds. Who knew you could be “thrilled” with any kind of brain bleed?

With all of this progress, there was talk of Isabella possibly coming off her CPAP by the end of the week. We continued Kangaroo Care and on Tuesday I held her against my chest for almost an hour! It was a good
day.

How quickly things can change.

Every morning, right after we open our eyes and before our feet touch the floor, we call the NICU to find out if Isabella has had a good night. Usually we’re told “she’s doing fine”, “she’s great”, or “she’s been a good girl”. Wednesday morning the nurse paused and said, “Isabella had a rough night”. After averaging 3-6 events each 24-hour period over the last week, she had suffered a staggering nine events between midnight and 6.a.m. During these events, either her heart stopped beating, she stopped breathing, her oxygen levels dropped below normal, or a combination of the three. Something was definitely wrong.

By the time I got to the hospital, there were two doctors and a nurse huddled over her isolette, and they all looked worried. They told me that although her blood work was normal, Isabella was not acting herself. “You can’t just look at the objective data,” they said, “it can lie - sometimes you just need to look at the baby”. And so we did. Isabella’s color had gone from pink to gray. Her face was often in a wince and her brow was furrowed; they told me this meant that she was probably in pain. She no longer kicked her legs when the nurse changed her diaper.
She didn’t move her head when they adjusted her CPAP prongs or flail her arms when they massaged her chest. Nicole, her nurse, picked up Isabella’s arm and told me to watch as it flopped, lifeless, back down to her side. It was a terrible moment.

They turned up Isabella's ventilator and gave her supplemental breaths and extra oxygen –after fighting for four weeks to make progress on that ventilator, Isabella was taking steps backward. Before I left that day, the doctors were convinced that it was most likely an infection, so they started intravenous antibiotics. Since Isabella was born, the doctors and nurses had been warning us that every baby in the NICU
gets at least one, if not several, infections before they go home – now it was her turn. An infection can cause major complications and, in the preemie manual they gave us on our first day in the NICU, it said
that 25% of infected preemies don’t survive. I was used to saying goodbye to Isabella every afternoon, knowing that she was a small, but stable baby. But that day, I had to leave our sick little girl behind
and it was a terrible feeling.

Thursday morning there was more bad news. Overnight, Isabella’s episodes had increased and were now clustered, and her 4 a.m. blood work confirmed an infection. I called Patrick; he was away on a
business trip and booked a flight home immediately. But again, by the time I had gotten to the hospital, just a few hours later, things had changed - this time for the good.

Despite her earlier, ominous blood work, Isabella was looking better. "Sometimes, you just have to look at the baby," they were still saying, but this time with smiles on their faces. The antibiotics had kicked in
and Isabella was getting back to herself-pinker, and a little feistier. By the time Patrick reached the hospital, we were able to cautiously celebrate.

Isabella is now back to her four-and-a-half-week-old self. She is bright pink and very active, her face sweet and calm, and when she's sleeping, she looks peaceful and comfortable. She weighs a scale-bending 935 grams or 2.05 lbs, and no longer requires intravenous fluids. She gets 16 ccs of formula every 3 hours.

The doctors won't allow us to do Kangaroo Care for a few days, until they know that all of her blood work is, and will remain, completely normal.

Next week we're hoping Isabella gives up the melodrama and tries her hand at comedy. We could all use a few laughs.

Thanks for all of your good thoughts!

Much love,
Marcia, Patrick & Jade
P.S. Enjoy the pictures.

Update #3 on Isabella Rose - March 2, 2006 - 24 days old - Gestational Age 28 weeks

Isabella is having a great week.

She has continued on her CPAP since last Sunday, and
while she still receives supplemental oxygen from the
ventilator, and pressure to keep her lungs inflated,
she no longer needs the machine to help her take a
breath. Isabella is breathing on her own.

Her feedings of preemie formula have increased over
the last 5 days from 2ccs to 8ccs, so she now gets
about 1.5 teaspoons every 4 hours. After each
feeding, they check to make sure there is no
"residual" in her belly - meaning she cleaned her
plate - and then they crank up her feedings. Thanks
to her hearty appetite, Isabella now weighs 715g, 5g
more than her birthweight, an important milestone.

Some of you have asked what it's like in the NICU. It
is, at once, the saddest and most hope-filled place in
the world. There are five rooms, each with a capacity
for about 10 babies, arranged according to acuity
level. Isabella's room, reserved for the most
critical babies, is also the loudest, because the
sickest babies' monitors are constantly "alarming".
There are different bells and buzzers that indicate
which baby stopped breathing for a moment, which one's
heart rate dipped, and which baby needs to have the
oxygen turned up on their ventilator. The doctors
call these momentary alarms "events", and a baby's
progress is charted according to how many "events"
they have in a 24-hour period. Isabella averages
about six each day, which, according to the doctors
means that she is very stable, particularly for a baby
of her very small size. We can hardly wait for her to
graduate to a different room.

Yesterday was incredible. I held Isabella in my arms,
outside of her little, plastic baby condo for the
first time. Amy, her nurse, opened the doors of her
isolette, removed the CPAP prongs from her nose, and,
after gathering up her many wires and tubes, scooped
Isabella up and gently placed her on my bare skin,
directly on top of my heart. I thought for sure that
she would "alarm" from being yanked from her cozy
little bed, but after only a few moments on my chest,
Isabella nestled in and found a good spot, curled up
into a tight bundle, and fell asleep. It was magical.

They call this "kangaroo care" - I call it really,
really scary!!! The doctors and nurses tell us that
studies have proven Kangaroo Care helps preemies grow
and recover faster than those babies deprived of such
skin-to-skin contact. More importantly, they say that
even the earliest preemie can recognize her mother's
voice, scent and even her heartbeat, which is why they
place them on the chest. After several weeks now of
Isabella recoiling from anyone's touch, it's nice to
know that she knows her mama.

Thank you all for your great emails, and for keeping
Isabella in your thoughts.

Much love,
Marcia, Patrick & Jade

Update #2 on Isabella Rose - February 26, 2006 - 19 days old - Gestational Age: 27 weeks+2 days

Hi Everyone:

Isabella has had a tremendous few days. Last Thursday, she opened her eyes for the first time! A baby's eyes stay fused until about the 26th week, so she was right on time with this milestone, and I was thrilled to be there when it happened.

Since her surgery last Wednesday to close her heart murmur, her lungs have continued to improve. As a result, they reinstated her feedings of special preemie formula which she receives through a tube in her nose that goes directly into her stomach. She receives 2cc every four hours- just to give you an idea of how much this is, there are 5cc in a teaspoon and 30cc in an ounce! But for little Isabella, this is a feast! She is still around 685grams (about 1.5 lbs) but she is trending upward which is important.

Today, we were thrilled to see that Isabella's lung function improved enough for them to extubate her breathing tube from her mouth! This is huge! She now is on "CPAP" which stands for Continuous Positive Airway Pressure; these are two prongs placed inside her nostrils that are attached to tubes which wind their way to her ventilator. As Isabella takes breaths, these prongs deliver supplemental oxygen, as she needs it, and also air pressure, the latter of which keeps the sacs in her lungs open, so she doesn't have to reinflate them with each breath. Incidentally, they tried to extubate Isabella when she
was just five days old, but she lasted only 5 hours before she became very tired and they had to reintubate. As of this writing, she's been going strong for over 12 hours. Go Isabella go!!!!

While still inside the isolette, we held Isabella in our hands yesterday, very briefly. She doesn't tolerate human touch very well at this stage, so mostly, we try not to disturb her, but occasionally Patrick will place his finger inside of her delicate
little hand - and Isabella enthusiastically grabs hold of it - good practice for later when he teaches her how to safely cross Broadway.

Yesterday I changed her tiny diaper. It's about the size of a "post-it- note", and even at that, it's still too big for her. It felt very good to do something so mundane, yet so maternal.

That's it for now. Here are a few pictures of those beautiful eyes, wide open, and her lovely new CPAP.

Talk to you all soon,
Much love,
Marcia, Patrick & Jade

Update #1 on Isabella Rose - February 20, 2006 - 15 days' old - Gestational Age: 26 weeks + 5 days

Hi there - I thought this might be the easiest way to reach a lot of you that have been asking about Isabella.

As some of you know, she had a challenging day today. Patrick was there with her all day while I waited at home and took Jade to her classes. Her heart surgeon said that she came through it very well - her heart murmer has been closed. The doctors described it as very routine and it only took about 20 minutes to make the incision and insert a staple to close the hole in her valve. She'll have that staple as a little souvenir for the rest of her life.

The doctors are hoping that the surgery will help correct some of the damage that's been happening, in the form of fluid build-up in her lungs, which was made worse by the murmer.

It will take Isabella only 24 hours to recover from her surgery, but during that time, she will seem worse before she seems better. So, although the next day or so will be no fun for anyone, we're hopeful that she'll be showing signs of progress soon.

Next for her is to get back to her brith weight (she is currently 660 grams but was born at 710 grams -about 1.5 lbs), get back to her feedings of formula (which had to be interrupted when the murmer was discovered), and most importantly perhaps, to have ber breathing tube extubated. While the tube is currently keeping those little lungs moving, it can cause
another flurry of complications that we'd like to avoid.

Thank you all for keeping us in your thoughts and prayers. It helps more than we can ever express, knowing that you are all pulling for her.

I'll try and keep you all updated via email every few days, or as Isabella reaches another triumphant milestone.

Much love,
Marcia, Patrick & Jade

P.S. Attached is a photo of Isabella from yesterday -14 days old/26.5 weeks . She's not exactly what we'd call a GAP baby yet, but to us, her "cute factor"increases a little every day.

Pictures of Isabella at 7 Days' Old - Gestational Age: 25 weeks + 4 days

This is Isabella at one week. Her bilirubin level was high, so she was placed under phototherapy lights, and wore a mask to protect her eyes.

Bilirubin is the waste product resulting from the breakdown of hemoglobin molecules of worn out red blood cells. Normally, it is excreted from the body as the main component of bile. Excessive levels of bilirubin stain the fatty tissues in the skin causing a yellow discoloration; this condition is called jaundice, which is why Isabella appears very yellow in these pictures.

Very high levels of bilirubin in the bloodstream can cause permanent damage to certain areas of the brain of newborns, a condition called kernicterus. This can cause a crippling condition called athetoid cerebral palsy. To prevent this, bilirubin levels are carefully monitored in newborns, and excessive levels of bilirubin are treated by either phototherapy ("bilirubin lights") or exchange transfusion.

Isabella recovered from her jaundice with phototherapy.

Pictures of Isabella at 6 days' old - Gestational Age: 25 weeks + 3 days

These are the first pictures of Isabella. She was born on Tuesday, February 7, 2006. I was in the hospital for the next four days and kept forgetting to have Patrick bring in my cameras. Even after I went home, it took me two days to remember them myself. Those first weeks were filled with so much anxiety and worry - it was difficult to keep anything straight. I will always regret not having a picture of Isabella from the day she was born.