My Prematurity Story

Thursday, November 17, 2011

World Prematurity Day - Nov. 17, 2011

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Today is the March of Dimes' annual World Prematurity Day. I decided to join the thousands of other people around the world sharing their prematurity stories in order to help raise awareness of the growing problem of premature birth. Approximately 13 million babies worldwide are born prematurely, every year.

Here is the story of one of those 13 million:

It was 2002, and I was having a really difficult pregnancy. At 30 weeks of gestation, it became clear that my baby would have to be born early. There was no way to hold off any longer, after premature ruptured membranes 8 weeks earlier. Luckily, I had time to get a couple of steroid shots to help develop the baby's lungs. We arranged for our older child to stay with my sister until my parents could get him and take over his care for as long as possible.

My second baby boy was born on Shabbat, July 27, 2002. I remember being in labor early that morning, and my husband asked if I thought he could run to shul later at 8:30 (we were at White Plains Hospital Center, about a mile from the nearest shul) . I don't think I've ever called him so many nasty names, before or after that. Our tiny baby was born at 9:36. He was beautiful, perfect. Just so tiny. He weighed 3 lbs, 4 tenths of an ounce (1375 grams)! (never forget those 4/10 of an ounce. they count!). There was a whole team present for his birth - my midwife, her back-up OBGYN who was really in charge but agreed to let my midwife assist with the birth, 2 labor nurses (one had already gone off shift but just wanted to stay and help - bless her!), the head labor nurse (who was so awesome, probably way more help than my midwife), the neonatologist,  2 NICU nurses, and, of course, my husband! After checking my tiny baby's vitals, they let me hold him for less than a minute before whisking him off (in a heated bassinette) to the NICU. As they prepared to do this, I told my husband (through my tears) to go stay with the baby and not to let him out of his sight, since my midwife gave orders that I rest for at least an hour before going over to the NICU. It is so hard to practice attachment parenting under these crazy circumstances, I just did not know what to do.

I really felt the emptiness of my arms as the team cleared out of the room. All the emergency equipment, that, Thank G-d, had not been used was cleared away. All the stuff was cleaned up. The placenta was sent to pathology to find out if there was some medical reason for the premature birth (apparently this is standard procedure, but became a slight hassle. It turned out that the hospital's pathology unit did not accept my health insurance...) Everybody was leaving, but I had just labored and birthed a baby, yet I couldn't hold him, nurse him, get to know him...

My midwife told me to eat and drink, sleep, etc. but I couldn't. I knew they would transfer me to the postpartum unit (I had been staying in the ante-partum room and gave birth in the adjoining high risk delivery room) soon, and I had to pack up all my stuff for the move (I had kind of moved in for the long haul). My husband was over in the NICU and all the nurses assumed I was finally sleeping. I packed up and just sat on the bed. Eventually a nurse came in and told me they'd move me now, as soon as they got a wheelchair. I told her I could walk, but she wouldn't hear of it! So they transferred my stuff and then helped me get settled into a new room. I tried to rest, but I couldn't. Eventually I called a nurse who took me over to the NICU to find out what was doing.

Those first few days were a whirlwind. After that first wheelchair visit to the NICU, I began walking back and forth all day long (until I was discharged 48 hrs later. Then I had to get rides or taxis back and forth until I felt up to driving again and my health care provider ok'd that!). I got yelled at by some nurses who felt I should be taking it easy. "But," I told them, "I've been on bedrest for 19 weeks and now I can walk again. And I feel better now than before I gave birth!" So I walked back and forth, and mostly gazed at my tiny baby. He was in an isolette. He had a CPAP machine going, so there were nose prongs in his nostrils. There were monitors taped to him, and an NG tube going in through his "umby". The lactation consultant supplied me with a great breast pump, but I had a hard time getting that going. Eventually it worked, it was just harder to get my milk supply going than with my first child (pretty soon though I was completely oversupplied. What 3 lb baby can take 11 oz at a feeding?!. Yes, I pumped 11 oz every 3 hours for 5 weeks.).

I gradually was allowed to hold my baby (we put "Baby Boy" on his birth certificate, not having picked out a name yet, and certainly no brit would happen anytime soon, so we were in no rush). He was so tiny. He wanted to nurse, but the NICU staff was reluctant to let me nurse him. They said he was so small that he'd burn more calories sucking than he could take in, and he had already dropped down to 2 lbs, 11 oz, which seemed to alarm everyone. And then his billirubin levels went up. And up. And up. So he had to lie under billi-lights, with these cool "shades" over his eyes, but that kid hated it all. He pulled the CPAP prongs out so many times, they decided to see if he could get enough oxygen on his own (yes, he could!). He pulled off his heart monitor, his pulsox monitor, and all other tubes and wires he could. So of course he somehow managed to get those shades off his eyes, and then the lights were so bright he would scream. But his lungs were so small you could barely hear those screams, and I'd walk into the NICU after a break and ask the nurse, "Why is my baby screaming?" "Oh is he? I didn't know," was the response, and I'd show her. And they'd adjust everything all over again, apologizing that they hadn't gotten to him. He was the healthy one in the NICU, so the nurses had actually begun to ignore the beeps of his machines! He was awesome. He kicked and pushed until he rolled over. Just 31 weeks gestational age and the kid managed to roll across his isolette. Eventually they decided he was healthy enough to do "kangaroo care" and they started allowing me to hold him much more often, but still we were not allowed to bring our older son in to meet his brother...

Thank G-d, aside from the billirubin scare, our baby was healthy. There were a few other babies in the NICU at the same time, and it seemed like every day one or the other was sick, or crashing. Parents were kicked out of the NICU anytime there was a new admission or there was a medical emergency. One day I got call after call on my cellphone telling me not to come over yet, as there was one crisis after another. They always prefaced it with, "Don't worry, your baby is fine, but..." (I finally got in that day at 7 pm)

Then eventually, one day I got a call asking me to come over now. I got so worried I didn't even ask what was wrong. I was shaking when I got there and I couldn't imagine what could have gone wrong. I found the nurse who called me and she saw the look on my face and immediately apologized for scaring me. "We have a parent whose baby might go home this week and we know you want to take your baby home soon too, so we thought you could take infant CPR together today. We're offering a special class, and we can't send your baby home until you take it." PHEW. I breathed sigh of relief.

After the class, I found the neonatologist and started pressuring him. "How soon can my baby come home? I need him to come home." My family was living all in different places - baby at the hospital, me at someone's empty apartment near the hospital, my husband at our new house in Pennsylvania (commuting back and forth), and our older son was being bounced between the 2 sets of grandparents...

Eventually he said that if all went well he would consider discharging him at 35 weeks gestational age. That gave me one week! I was elated, and a little nervous. I started shopping. I bought preemie clothes (he still weighed less than 4 lbs) and warm sleep sacks, a head rest insert for the car seat and one for the infant swing. I don't know what else I bought, but I went a little nuts.

Finally, at 35 weeks gestational age, on a Thursday, almost 5 weeks after he was born, we brought our tiny baby home. He weighed just over 4 lbs that day. I was so thrilled to be bringing him home! He was healthy and perfect and oh so tiny. I had no idea what I was getting into. But I have no regrets about pushing to bring him home "early" (our health insurance had approved 2 more weeks in the NICU). We just needed to be a real family again, no matter how tired and overwhelmed...

At the end of this story, I must thank Hashem for all the good and the many miracles that He gives us, every day. And for granting life and health to our little Netanel Chayim.

That's the story as I can bring myself to tell it today. There is more to the story, obviously. I left out so many details. And no where did I mention that I myself was a preemie, born at 29 weeks...

About a year after our preemie was born, we created a prematurity band page in his honor (on the March of Dimes site), and our family members donated to MOD to help save more premature babies, and to ensure that many many more babies have a fair chance at a healthy life!

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