My Preemie Story

Today is Prematurity Awareness Day. In fact, November is Prematurity Awareness Month. I know I haven't posted in months, and the last post I wrote was also about my sons, but in light of the cause, I'm going to tell you the whole story.

When I tell people my sons were premature, I often get this response: "Well isn't it normal for twins to come early?" The short answer is yes, but not as early as mine did. Twins don't have a lot of room in there, but they still need the same amount of time to develop. So, just because it's "normal" for twins to come early, that doesn't mean mine were ready to show up when they did.

I had a fairly easy pregnancy, as pregancies go. By that I mean I only had the more common pregancy complaints - I got tired easily, my back hurt some, I had heartburn. I was nauseated most of the time, but never anything too bad. My first trimester (or semester, as I like to call it) I was exhausted ALL of the time, but by my second trimester (semester), I felt better and had started nesting like crazy. My house has never been that clean since.

So I had it pretty easy, if you consider being single and working three jobs easy. But no major problems, no pain, in other words - no WARNING.

November 17, 2001 - a Saturday - I was on my way out the door to go to work, and I had to pee (again). But when I went to the bathroom, I found blood. I called my mother, sobbing, and told her I would meet her at the hospital.

I didn't really get the seriousness of what was going on. I mean, sure, I knew bleeding was bad, and I was plenty scared, but I still drove myself to the hospital and stood around at the desk talking to the receptionist. They kept offering me a wheelchair but I was too full of nervous energy to take it. Then my mom showed up, and . . . well, I sat down.

I spent the night in the hospital on fetal monitors - two, of course, which was less than comfortable. The doctor came in to see me and was comforting. I was 80% effaced but not even a centimeter dialated. I explained that I'd had gas a lot that week, at which point he chuckled and said it wasn't gas, it was small contractions. He put me on Brethine to stop the contractions, and the next evening I was released. I was told to stay on strict bedrest. I went to stay at my mom's house. My mother and my grandparents all live together, so at their house I would have plenty of help and wouldn't have to do anything. The doctor said I would be on bedrest for the rest of my pregnancy, but if I stayed in bed like I was told, there was a decent chance I'd be able to spend the rest of my pregnancy at home rather than in the hospital.

So I stayed in bed. I was allowed to get out of bed for meals and to use the bathroom. My mom got me a seat for the shower and walkie-talkies so I could call her from the guest room downstairs to her room upstairs if I needed her at night.

I was there for 9 days. It was pretty boring, but my cousin brought me his TV and DVD player so I could watch movies. I read a lot. Things seemed to be going well. I got to eat Thanksgiving dinner with my family. things were going so well, in fact, that my mother encouraged my grandparents to go on the mini-vacation they had planned, to our cabin in the Tennessee mountains. She assured them that she could handle everything at home.

The morning they were supposed to come home, I woke up around 4 in the morning with blood everywhere. I called my mom on the walkie talkie and she drove me to the hospital. She later confessed that she'd been secretly been studying the "emergency birth" section in What to Expect and that she spent the whole drive to the hospital going over procedures in her head in case she had to deliver my babies on the side of the road. I teased her, but I'm still glad that my mom believes in being prepared for anything, even though we didn't need it.

Once I was settled in at the hospital  she went home to clean up the blood so it wouldn't scare my grandparents when they got home.

This time, I found out I was 100% effaced and 2 centimeters dialated. They put me on a magnesium sulfate drip to stop contractions, because the Breathine just wasn't cutting it. The doctor told me i'd have to spend the rest of my pregnancy in the hospital. No more "light" bedrest. I wasn't allowed to get up to use the bathroom, instead I had a catheter put in - very high on my list of least favorite experiences. They adjusted my bed so my feet were above my head - to get gravity working for me, too. And I waited.

The next day when the doctor came in to check on me I was doing ok. The day was pretty uneventful, and in the evening the doctor came to say goodnight. He'd been at the hospital 24 hours and delivered 2 babies that day. He joked "Just try and keep your legs crossed," to which I replied, "If I could do that we wouldn't be here!"

My mom was about to leave, but then I felt it. "I'm leaking, am I bleeding again?" I asked the nurse. The doctor came back, they'd caught him on the way out to his car, and told me that no, this time my water had broken, and we would have to deliver. I apologized for making him have to stay, but he just squeezed my hand and said, "Don't you even worry about me."

Then it was time to make some decisions. A quick ultrasound showed that Baby A was in the right position for a vaginal birth - I still joke sometimes that it was all his idea to be born early because he couldn't wait to see what was out there. But Baby B was breech. The doctor explained my options. I could deliver Baby A vaginally and hope that, once things got a little less crowded in there, Baby B would shift into the right position. But, he explained, if the baby didn't shift positions, he was too small for the doctor to safely reach in and turn him around. So if he didn't shift on his own, I'd have to have the second baby by cesearean. I ended up deciding just to have the C-section. It didn't seem like a good plan for me to do both, because then I'd be healing from both a vaginal birth and a c-section, and that didn't seem like a whole lot of fun to me. So they went off to get everything ready.

A nurse came in and explained that my OR would be very crowded. In addition to the doctor and nurses that would be there for me, each baby would have his own "team" - a nurse, a respiratory specialist, and a neonatologist came in to be there for both babies.

There's stuff I remember, and stuff I was told later. I remember my mom trying to find a priest to come in to pray for me, but I didn't understand why. I realized later that she wanted him to be there to give the babies Last Rites if it was necessary. I don't remember the priest being there. My mom says he came. But I still swear I remember a Rabbi being there instead - and I remember thinking "Well at least God's got somebody in here with me, it doesn't matter what team he's on."

So I don't remember the priest, but my mom says he was there. I do remember my mother giving me a small wooden icon, a religious painting ofJesus, that my grandmother - who is Russian Orthodox - sent. I know I had it in my hand when they wheeled me into the OR, but I don't remember if they let me keep it.

The epidural wasn't pretty. It wasn't actually an epidural either, but a spinal block, which numbed me from the neck down. It's administered in the same manner as an epidural, though - a big ol' needle in the back. For some reason, they kicked my mom out of the OR for the spinal block portion of the festivities. But she said she heard me from the hallway. It took 8 or 9 attempts. He stuck me 8 or 9 times. I'll let that sink in.

I can't remember exactly what the problem was. After the first couple of tries, he switched to a smaller needle. He asked me curve my spine more. I pointed out the HUGE pregancy belly that was preventing me from hunching forward any further. He stuck me a couple of more times. I swore a lot. I begged him to just hit me over the head with something, and promised not to sue if he did. He stuck me a couple of more times. I swore at him and called him names. He stuck me again. I yelled some more. He told me to be perfectly still, at which point I yelled "Hey! I've been still for TEN F**ING DAYS! I've been doing MY job, how 'bout you do YOURS, chief?" (I was pretty cranky at that point) Then he stuck me again, but this time it worked. The anesthesia started taking effect almost immediately, at which point I turned to him, stroked his arm and cooed, "I'm reeeeally sorry I yelled at you. You're not a f**er. You're a really greeeeaaat guy. Let's be friends." I stopped wanting to be his friend a couple days later when I discovered that my entire back was one GIANT bruise from all the needle sticks. But oh well, bygones.

Unfortunately, being numb from the neck down didn't mix well with the nausea caused by the magnesium sulfate. I kept feeling like I was going to puke, but could move the muscles in my neck, so I started freaking out just a teeeeeeeny bit. So they sedated me. It was only a little sedation, supposed to last 10 minutes, just enough to let the doctor get started without me wigging out. I was still pretty loopy, but I do remember bits and pieces. I remember the important stuff.

I remember when they pulled my oldest son out, and he cried this strange little quacky-honky cry, like a tiny duckling. I remember being thrilled that he was crying, because that meant he was breathing, all by himself. Then his "team" whisked him away to go check him out.

I remember that my younger son came out and immediately let everyone know what he thought about the whole situations. I heard one of the nurses yell "He's peeing!" - my mom told me later he got quite a few of them.

On November 27, 2001, my beautiful, strong, stubborn, amazing boys were born - at 7:27 and 7:29 pm.

I don't remember a whole lot about that night and much of the next day. I was, of course, on morphine, and I was pushing that little button for all I was worth. At some point I asked to see my sons, but they told me I couldn't go down to the NICU just yet. Someone came in and told me that the babies were doing as well as could be expected. I'm sure they gave me more details, but I was pretty loopy, and don't really remember much.

I got to go see them the next day, wheeled down in my chair. I washed my hands for the required 3 minutes at the door and then went to see me sons for the very first time. They were in isolettes, and under bilirubin lights for jaundice.  I wasn't allowed to touch them yet, but my nurse timed my visit just right - because it was time for their diapers to be changed and all their needles and wires to be checked, so I got to be there when they opened up the isolette.

They were so, so, heartbreakingly tiny. My oldest, Phoenix, weighed 2 lbs 7 oz and was 14 inches long. My youngest, Dorien, weighed 2 lbs 6 oz and was 15 inches long. That's really small, but they were actually pretty big for their gestational age. My doctor had told me that I was 26 weeks pregnant when I delivered. But the neonatologist said it was probably only 25, based on their development - for instance, their eyes were still fused shut for the first couple of days.

They were both on respirators, had all kinds of monitors around them and leads taped to their chests, and gavage tubes in their mouths to feed them. But they were beautiful. I loved them so much it was an actual physical sensation, a weight in my chest.

I still didn't really understand, even then. I knew they were small. I knew they weren't done cooking yet and that they needed machines to breath for them, and feed them, and monitor their oxygen levels and their heart rates. But I didn't really grasp the seriousness of everything. I didn't really have a lot of concrete ideas about what to expect, but I had a vague notion that they'd be in the hospital for maybe a couple weeks and then they'd come home. They'd be small, sure, but they'd be just like "normal" babies in every other respect.

Boy did I have a lot to learn.

When they were about 4 days old, I came to the hospital to see them and to have what I called "my first parent-teacher conference". I met with one of the neonatologists and the head NICU nurse, and they spent the next hour and a half telling me everything that could possible go wrong. It was probably the worst hour and a half of my life. My mother came with me, and thank God she took notes because there was so much to take in that I would never have remembered it. It's pretty hard to retain stuff like that when every part of you is silently screaming No No No!

They said that my babies were very sick, and had only about a 20% chance of survival. I've seen figures recently,here , that chances of survival at 25 weeks are somewhere between 50 and 80%. I don't know if the odds have just improved that much in the last nine years or if I heard wrong. The doctor told me that they couldn't breathe on their own and they'd be on respirators for a while, then graduate up to supplemental oxygen and eventually plain old room air. He explained that they wore event monitors that set off alarms if they didn't breathe for 30 seconds or if their heart rate dropped below a certain number. He said they'd probably stay in the NICU at least until their due date, probably longer.

Then he explained the risks. They'd be scanned  periodically to check for cerebral hemorrhages - bleeding in the brain. Bleeding could result in cerebral palsy, retardation, or death. I learned that many of the issues of prematurity can be treated with medicines, but that often, these medicines can pose new dangers. For example, both of them had PDA, a valve in their heart that should have closed after birth but didn't (find out more here ). There's a medicine, Indocin, that helps treat PDA, but the doctor said that they could only have three rounds of it. Any more, and they ran the risk of liver damage. At that point, if the valve still wasn't closed, they'd undergo surgery, which is extremely dangerous for micropreemies due to the weakness of their bodies and their underdeveloped immune systems. I also learned that babies who spend a long time on extra oxygen can develop Retinopathy , a condition in which the blood vessels grow out of control and can cause the retina to detach from the eyeball.

It seemed to me that caring for preemies is like walking a tightrope, requiring perfect balance. The very things that helped them could also hurt them, it all seemed a matter of timing, and detail, and, most of all, luck.

There were a host of other potential issues that I won't go into here. It all boiled down to a pretty bad outlook. They had a very small chance of survival, and even if they survived, there was a pretty good chance they'd be sick or handicapped - limited in some way. The doctor warned me that once they got through all the scary stuff at the beginning, they would still be behind developmentally. I should expect them to meet milestones like sitting up and crawling closer to their adjusted age than their actual age, and most likely a little later than that. He said I needed to come to terms with the fact that, for the first couple of years, they would always be a little bit behind. He also said that they might always be a little bit below average - not just smaller, but also slower to walk, slower to talk, and maybe a little bit below average academically when they reached school age.

The first couple of months were a rough time for me. Their father wasn't in the picture, and despite the love and support of my family and friends, I felt very alone. I spent a lot of time on the phone with a very good friend of mine. Her husband later told me about a conversation they'd had one night after she got of the phone with me. "I refuse to believe those babies won't make it," she told him. "They have to make it," she said,"because if they don't make it, Nik won't either."

But they made it. They've beaten all the odds.

We had our fair share of problems. They both had to have Indocin for PDA, but luckily it worked on the very last round, and they didn't have to have surgery. Phoenix had to have spinal taps on two separate occasions, because he developed a fever, and since babies that small can't localize infection, we needed to be sure it didn't become meningitis.(It didn't) He did develop Retinopathy, but a month after leaving the NICU, the problem self corrected. Phoenix came home on February 2, 2002 - 27 days before he should have been born.

Dorien had a harder time. He just couldn't get the hang of breathing. He was on the respirator for a lot longer than his brother. I wasn't able to hold him until he was 6 weeks old. He was very sensitive and any kind of disturbance - even someone walking to close to his bed - had him in distress. They were reluctant to let me hold him because they were worried it would freak him out too much to be touched and disturbed. But finally insisted, and they let me hold him. Our NICU was big on kangaroo care (skin-to-skin contact), so I wrapped him right up in my shirt, against my chest, and held him. For TWO HOURS. And in that time, not a single monitor beeped, not a single alarm went off. He came off the respirator the NEXT DAY. All he needed was his mommy.

Dorien stayed in the NICU a couple of weeks longer than his brother, he came home on February 20 - 9 days before his due date. He did have to come home on supplemental oxygen, which was scary, but we got through it. He stayed on that until around 7 months old.

They were always small - they didn't even get on "The Chart" for a long time. They wore 0-3 months clothes for the entire first year. And yes, they were slow on developmental milestones - it took them longer to roll over, sit up, and walk. But once they started walking, there was no stopping them. They started talking about the same time as other kids their age, and haven't stopped yet.

And they're brilliant. Brilliant. I know every parent thinks their kids are geniuses, but these kids are. They are in the 3rd grade now, with 7th grade vocabularies. They think and reason on a level that baffles me. They are in the 99th percentile on pretty much every standardized test they've ever taken. Last year, Phoenix got a perfect score on one of their standardized tests, while Dorien only missed 3 questions - in four days of testing.

My sons are miracles. Sometimes, when people hear about everything they've overcome, they say "They are lucky to have such a strong Mama." But those people are wrong. I'm lucky to have such strong sons. They never gave up, they never stopped fighting. They were- and are - so very, very brave. I'm the one that's lucky.

I've gone on long enough, but I want to say one last thing. We owe a lot to March of Dimes for the research that leads to new treatments and better chances for every preemie. But I owe even more to the parents that came before me. The ones who were willing to try a new medicine, or an experimental procedure, so that not just their babies, but all the babies after could get stronger, better, healthier. I don't know if I could take those chances. So thank you, from the very bottom of my heart, for taking those risks.

We might not be here today if you hadn't.