Friday, November 5, 2010

November is Prematurity Awareness Month

This is pretty important stuff : currently, 1 in 8 babies is born before 37 weeks' gestation. It's also pretty personal for us. In 2007, our daughter Coral was born at 30 weeks. She spent six weeks in the NICU and came home on prescription caffeine and an apnea monitor, just a hair over four pounds.

I encourage everyone to do what they can to support The March of Dimes. Even a little goes a long way in helping the cause. The March of Dimes not only engages in programs to help prevent prematurity, but it also funds research and developments to help babies who are born preterm in spite of the best prenatal care. We never expected to need any of that technology, but we certainly were grateful when the unexpected happened to our third child.

The following is Coral's birth story. I hope you'll take a moment to read and understand what parents of premature babies are struggling through every day. Also, I hope you'll see what joy our experience brought to us.

"Ours isn't the most miraculous story you'll ever read - we don't have the world's youngest surviving preemie, or the smallest, and she isn't a quintuplet or even a twin. However, she is our own private little miracle and our lives will never again be the same. In spite of all the pain and fear and tortuous hours of uncertainty, our preemie experience has been nothing short of amazing.

I became pregnant with our third child in late August of 2006; she was due May 3rd, 2007 and we all expected a normal pregnancy after 2 very uneventful rounds with her brother and sister. At first things were peachy. I had minimal morning sickness, tolerable cravings, and little weight gain. I was in maternity clothes quite soon but was thrilled to don them. An initial ultrasound at 9 weeks showed one little healthy baby; our son wanted a brother, our daughter wanted a sister, and we were thrilled with either option. The weeks dragged on as we waited for the 'big' ultrasound at 18 weeks. Ours was scheduled just 4 days before Christmas. What a special gift to see our baby and hopefully find out the gender!

In retrospect, as the weeks slipped by towards our 18-week appointment, things were amiss. I didn't have a large appetite, and had no taste for sweets, which is simply unheard of for me. I made hundreds of Christmas cookies to give to friends and family and could not bear the thought of eating even one of them. I couldn't stand for more than a few minutes without feeling as though I had the flu. I felt like I was 9 months pregnant instead of 4. I honestly wondered if we'd see an unexpected twin at our ultrasound.

Finally the day had come. The whole family squeezed in to the ultrasound room while the tech made her initial measurements. My son had us all in fits of laughter when he declared in all seriousness that he saw a claw on the screen. We were thrilled to pieces when we found out we were having another girl! We also were unaware that our OB's machine was a 4-D machine, and it was breathtaking seeing her, looking so real and baby-like inside of me.

Minutes later, clutching a few precious pictures of our daughter, I sat in the OB's exam room for my appointment. It was then that he informed me something was amiss. The placenta was twice as thick as it was supposed to be. He didn't seem alarmed but told me he would be setting up an appointment for me with a maternal-fetal specialist at a high-tech diagnostics center. My heart sank. What on earth did this mean?

Over the next 10 weeks, we had no real answers. I had multiple high-level ultrasounds, all of which showed an apparently healthy baby girl and a very unusual placenta. The placenta grew to be almost 4 times thicker than even the thickest placenta should have been - what would have been noteworthy at 5 cm was a full 19.4cm thick. It was also splitting into fluid-filled layers and calcifying. Multiple specialists were involved with the ultrasounds and the best conclusion they reached was, "We've never seen anything like this before." This is NOT what you want to hear from the people in charge of your care.

We did blood tests for infections of every variety, full histories to verify that I never smoked, did drugs, drank alcohol, was exposed to anything abnormal, or did anything else that might solve the puzzle. There was simply nothing to point a finger at, and no conclusions to be drawn. The placenta was a ticking timebomb. When would it die? When would it get so large it broke down? Could it supply adequate food and oxygen to the baby?

Nobody could or would tell me anything. I was sick with worry, and sick from the diseased placenta. I searched endlessly online for cases similar to mine and didn't find much. What was out there spoke of genetic defects, often fatal; miscarriages; deforming syndromes; growth retardation; and more poorly understood mysteries. Nobody ever suggested these things to me but surely something had to match with what I had. 

By the start of February, I was a physical mess. Where my past 2 pregnancies had found me vibrant and excited at this stage,  I was barely able to function. Merely walking about the house left me dizzy and exhausted. My appetite was minimal; I had to force myself to eat and even to drink. Yet at night sleep eluded me. I would sit in the living room in agony, itching all over my body. Benadryl and antihistamine creams had zero effects. By week 27 of pregnancy, my blood pressure was shooting up and I was placed on medication. My abdomen was measuring almost 40 weeks. I had no idea how I was going to make it through the third trimester.

We reached week 29. My blood pressure was still high and I was suffering from abdominal cramps. On Monday I turned in a 24-hour urine specimen to be analyzed for protein and the telltale signs of preeclampsia. On Tuesday I had another specialist ultrasound, which showed an apparently healthy baby measuring 3lb, 4oz and a bizarre but unchanged placenta, with the addition of extra amniotic fluid. On Wednesday we had an OB appointment; he walked into the room, glanced at my chart, and told us I needed to get to the hospital immediately. My protein count was a +3, my liver enzymes were elevated, and my platelets were dropping. Our jaws dropped.

Wednesday evening we checked in to the hospital; I couldn't stop trembling in fear. That night, once hooked up to the monitors, it was apparent that I was in labor and contracting with regularity. All night and into Thursday morning, magnesium sulfate was pumped into my veins to control the preeclamptic reactions as well as to try and stall labor. I saw the doctor who would be our baby's main neonatologist, and he promised me 90% of 30-weekers survived. Ten percent odds had never loomed so large. I received my 2 steroid shots to mature the baby's lungs in 24 hours, and Thursday evening, 30 weeks pregnant, it was decided that we'd let nature take its course. 

Coral was born at 1:28 am on February 23rd, 10 weeks short of her May 3rd due date. I saw my OB hold her up and she was small but still looked like a perfect little baby. She gave a little cry and no sound was sweeter. They immediately took her over to a warming bed staffed with a host of doctors, and I could not see her but knew she was there. I didn't know how she was or what they were doing to her.

Suddenly none of it mattered. The neonatologist came over and told us she was breathing and looked okay so far, and they were taking her to the NICU. I was unprepared when a nurse brought over this tiny wrapped up bundle and laid her atop my chest. She was the most beautiful, perfect little 3 pound, 3 ounce doll I'd ever seen. Lips trembling, I gave her a tiny kiss on the forehead before they whisked her away. The tears flooded as the room emptied out. The doctors all departed, the lights were dimmed down, and a nurse wandered in and out. We were left there, without our baby and without any idea of what was to come. We had no idea if she had a genetic defect or other problem in synch with the placenta.

We were briefly reunited at 4 in the morning. I was whisked into the NICU in a wheelchair, husband by my side. Baby Coral looked so tiny and helpless in this big scary isolette. She was attached to all these different wires going every which way, IV's in her hand and foot, cannula crossing her tiny face. She was clad in a diaper, which covered the majority of her stomach and legs as well as her behind. Her skin was an angry red. 

It was terrifying. I could not stop crying. I was overwhelmed by a torrent of emotions, including relief that she was alive and paralyzing helplessness that she was trapped in a plastic box, crying, and I couldn't do a thing to comfort her. According to the neonatologist who had spoken with me 2 nights before, one in ten 30 weekers didn't survive. We'd been sitting in the delivery room for 3 hours, wondering if she'd be that one in ten. Seeing her alive was such sweet relief I couldn't catch my breath. We put our hands through the isolette portholes and touched her tiny toes for the first time. My hands were shaking so hard I was petrified I'd hurt her or disturb some piece of medical equipment. I had no idea what was being done to her, or how stable she was. We were surrounded by other babies in their isolettes, multitudes of machinery, and a half dozen busy nurses and respiratory therapists, but had never felt so alone.

It was another 12 hours before I got to see Coral again. I spent time alone in my hospital room, 6 floors above the NICU in the wing designated for mothers with sick babies. The effect was intended to insulate grieving women from hearing other babies crying, but the silence was eerie and depressing. My husband was out trying to comfort our other children and pick up my mother from the airport. I was stuck in my room until I was more stable from the effects of pre-eclampsia and medication. I was unable fully to make the connection that I'd had the baby and was no longer pregnant.

I spent a very long weekend in my room, in pain, heart broken and hurting. Much of the time I was alone. My older daughter was extremely upset and talking to her on the phone was excruciating. Neither of the kids understood what was going on. I was worried sick about them, and when my husband was at the hospital to keep me company, I fretted that my extended family was watching over them instead of me. I desperately wanted to be home.

At the same time, I had a baby in the hospital. I was able to pump colostrum for her and the doctors had begun feeding her by gavage (stomach tube). I would visit her every few hours, taking the trip on shaky legs down the elevator and to the third floor. I still wore a hospital gown; we hadn't really taken the time or had the intuition to pack much when we'd left for the hospital, and after Coral was born we were in too much shock to think of something as simple as clean clothing for me. I didn't even have shampoo for a shower, although cleanliness was the last thing on my mind.

Sunday morning, I was considered stable enough to go home. I was more than eager to be leaving the hospital room and was desperate to be home with my kids. Mentally I knew I had a child a few floors below but emotionally I was stuck on thinking of 'my kids' as the older 2 waiting at home for me. 

My husband, mom, and kids came to pick me up from the hospital. We visited Coral briefly, taking turns watching the older 2 in the waiting area. The drive home was surreal - it was sunny and warm, a typical Florida in February. I could see all the colors as we whizzed along the highway, and feel the air blowing on my face, and hear my mom and husband talking and the kids jabbering, but everything was flat. It was like looking at a faded 2-D drawing. I felt like I was suspended in time and place in my OB's office 4 afternoons before,  when he told us we needed to get to the hospital right away. I was in shock and feeling empty of any thoughts or emotions.

We came home to a house completely empty of any baby things; it looked as though I'd never been pregnant. We hadn't had time to buy a crib, toys, or necessities; our only purchase had been a travel system and it was still sitting in our garage. My body was extremely weak and I could barely stand but I shrugged off my mom's help and staggered around the kitchen, making lunch for the kids just like any other day. Everyone kept telling me to rest, to take it easy, but I couldn't make myself sit still.

It wasn't until that evening that I broke down. My husband had made dinner and I was sitting on our couch watching some mundane television show that suddenly held no interest. He placed my plate in my lap and I took a bite, and as I swallowed suddenly felt empty, hollow, gutted out. In an instant I knew that I had had the baby and she was no longer nestled safe inside of me. What I had always known mentally became known in my heart.

The tears poured out and could not be stopped. I cried and cried and ached so painfully in my heart, in my empty womb, in my empty arms. I grieved for my baby. It is not natural for a mother to leave her baby, to not have her baby with her to see and smell and feel and nurture. At 2 in the morning it dawned on me that I was grieving for Coral like she had died, and not like she was in the hospital. I immediately stepped up with pumping breastmilk, which helped my hormones tell my body, there's a baby here that's alive and being nourished by you. 

As the days wore on, we quickly became versed in NICU lingo and process. We would enter the 3rd floor lobby, present our baby ID bracelet and collect our name badges, and head through the double doors to the scrub sinks. For three minutes we would scrub with an antibacterial soap, dry, and brace ourselves for our entry into the Level III (critical) NICU. We'd spot the doorway with our baby's paper heart, emblazoned with our last name, stuck up with the other hearts of the babies sharing our room. 

She'd be there, snuggled on her stomach in her isolette in a little shapeable padded bar and strap system that looked like a little nest. She had 3 leads attached to her skin on chest, stomach, and leg to measure heartbeat and respiration; one lead on her side to monitor her temperature; an IV with 3 or 4 tubings trailing off to liquid nutrition, vitamins, and medications; a nasal cannula taped to her face and attached to a scary-looking blue tube and a humidifying machine to provide oxygen; and a thin gastric tube taped to her chin and running into her stomach for feedings. Plus she was surrounded by a sea of pinging, beeping, alarming machinery to monitor everything attached to her, and there were other babies around us with the same and more. It was dizzying.

The next 6 weeks were long and hard. We would get to spend a precious hour and a half with our baby every evening. On day 5 we held her for the first time. We missed the first diaper change, the first bath, the first nipple feeding. We saw our daughter pierced in every conceivable body part by IV's, by quests for blood to monitor blood sugar and blood counts and infections. We dealt with wonderful,  caring nurses and the occasional nurse who sometimes kept us from holding our daughter when we were there simply because our baby was not next on the schedule.

We took two steps forward, one step back (and sometimes three or four steps back) several times with worries over a hole in her heart; back and forth on oxygen and problems remembering to breathe; stopping and starting feedings; weight loss all the way down to 2 1/2 pounds; and all the typical preemie troubles. It was so hard going to the NICU each night and not knowing if the news would be great or scary - maybe she'd be off the oxygen or maybe she'd have a blood infection. I had a hard time sharing the daily news with friends and family because I had the insane notion they'd be disappointed on the bad days.

During the NICU stay our lives pretty much ground to a halt. Things lose all meaning when you have a child lying in uncertainty in a hospital room. You forget how to talk to people who aren't going through what you're experiencing. Friends offer time and again to help with meals, with childcare, and you can't even manage to tell them you need a meal on Wednesday or to please watch the kids on Tuesday night. Just that tiny task seems insurmountable. You try to keep your mind on your job or business and it wanders right back to reliving those last weeks of pregnancy, or scrutinizing every detail of the whole 6 1/2 months, or you're on the internet reading every last scrap, the good and bad, of others' preemie experiences. 

You are infuriated that some people can treat themselves so poorly and have such a healthy baby that they take for granted while you tried so hard and your baby is in the hospital, future in the air, and you'd give anything to have her back in your belly. You cry as you sit in the hospital, waiting for the NICU to open, and watch mom after mom be wheeled out of the hospital, big healthy newborn in arms, ready to go home. You have no idea when it will be your turn. Every night you gaze longingly at that crib you had to buy after your baby was born, and you stroke the rail and the empty mattress, and you pick up the pretty pink blanket you bought before you had a preemie and curl up in a ball with it and cry yourself to sleep at night.

Finally our baby girl came home after 40 days in the NICU. Exactly 6 weeks, almost to the hour, since we left our OB's office, we were headed home with our little 4lb, 2oz wonder. She was unbelievably tiny and fragile, still attached to an apnea monitor 24/7 for those first few weeks. She pretty much lived in my arms, in the sling, and at the breast. She was the size of our older daughter's 15" baby doll; Ibis would actually steal Coral's clothes to fit her dolls. 

Coral quickly thrived. At her due date she was a respectable 5lb 15oz. Her heart was mostly mended (Coral does still have a small defect that has to be monitored), her eyes were fine, and she filled out. She had no problems breastfeeding full-time and it became apparent that her personality included a love of being held and lots of smiles. She hit all the normal milestones for her corrected age and by 6 months was a whopping 13lb 4oz. By a year she was up to 17lb 11oz, saying 20 words and just learning the tricks of forward motion. She surprised us all by taking her first steps at 18 months old.

Our entire family is more in love with Coral than we ever could have imagined. Having a preemie was absolutely the hardest thing we have ever done, but there's not one moment we would give back. Because she was born early and spent 6 weeks in the hospital, we don't take anything for granted. Every smile, every word, every preschool tantrum is met with a silent thank you that she's here and well. Coral is our miracle and we couldn't be more proud of her!"

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