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11/17/2009
Breathes life into
It hadn't seemed so serious that morning, when the NICU nurse called early to say we should be there. Of course we'd go, I said, just like we did every morning, in time for his first feeding, just after morning rounds. But she said we should get there soon. She said there was a problem. She didn't want to alarm us, but Charlie had an infection.
The signs of infection in preemies can be subtle, but the overnight staff had noticed that something was wrong with our baby. In Charlie's case, he'd experienced more desats, dips in his blood oxygen saturation. His color had been poor. He hadn't cried and kicked when his diaper was changed. They took a blood culture and started antibiotics long before they called us.
The doctors believed Charlie's central line — an IV catheter through which medication and nourishment can be delivered — had been compromised. While we watched, a PA pulled it out, slowly and gently, what seemed like feet of spaghetti-thin tubing. Charlie didn't move. At three weeks of age, 32 weeks' gestation, Charlie was septic.
All that day we sat by his isolette, listening to his CPAP rig bubble, watching him slowly receive another blood transfusion, his third. And what seems crazy to me now is that I really didn't know how sick he was. It wasn't until a doctor said, "This is really tough...but we think he'll go home with you," that I understood he still might not.
Shot full of vancomycin, to me that night he seemed better. He was angry now, screaming in protest as his vital signs were taken. I thought this must be good, in contrast with his earlier stillness, but then he just...stopped breathing.
The nurse rubbed his feet, and he started again. And then stopped. Rub, then breathe. Then stop. Then rub, then breathe. Then...stop.
I don't know how long we did that. I know that we continued even as the doctor told us that it was troubling, this pattern. That apnea was normal in preterm babies, but when it was tied to an illness it could be a problem, and when episodes occurred in a long string... He didn't finish that sentence.
Rub, then breathe, then stop.
It's a feeling many new parents share, the conviction that if you don't watch every rise and fall of that inexperienced rib cage, if you don't breathe with your baby, then she won't know how to do it herself. I breathed for Charlie that night, sitting by his bed, crying, eyeballs so swollen that it hurt to move them in my head, nostrils scrubbed raw by hospital paper towels. Every gurgle of his CPAP happened, it seemed, because we willed it. His breaths, when they resumed, were only because we worked for them when he couldn't.
Which isn't true, of course. The tickle of the feet and the rubbing of the belly helped, but it was the drip of caffeine, the caustic burst of antibiotic, and the transfusion that eventually brought him around. It was the science: serendipity and inspiration tempered by years of research and refinement, the careful observation and adjustment, a dedication that awes me. My deep gulps of air did nothing, practically speaking, for Charlie. All they did was keep me upright, somehow, next to the isolette.
...
I am thinking of the babies who don't have anyone to breathe for them. The only time I ever heard our NICU nurses say anything negative about another patient — for all the lip service paid to HIPAA, in a small and open ward like ours, there weren't too many secrets — was when a baby came in, born early because of her mother's drug addiction. The nurses, who were unfailingly warm and supportive to us, positively hissed when they spoke about this baby, so outraged were they by the circumstances of her life. I'm sure part of what offended them was the mother's drug use, which seemed a preventable cause of the baby's preterm delivery, but they seemed angrier that no one ever visited her. It's true that in all the time we were there, I never saw anyone there by her bed. And I think sometimes of this baby and others like her, and I wonder, when they've been sick, who's stood by their beds and willed them alive.
...
I think, How impossibly sad that they should have no one to help them fill those fragile lungs. But that's not right, because they do have someone. There are nurses and doctors and PAs and volunteers, all of whom bring their own mixture of expertise and compassion to the ward, who fight passionately for the babies under their care. And they have the March of Dimes.
People sometimes call children of ART miracle babies. I suppose there's something to that metaphor, though I don't buy it completely; I believe more staunchly in the science of it. What seems more miraculous to me than Charlie's conception is his survival. It's thanks to the work of the March of Dimes that he and countless other babies have lived, have been able to breathe on their own.
Like many preterm babies, when Charlie was born, his lungs were immature. They lacked surfactant, a substance that keeps the lungs from closing and collapsing upon exhalation, and couldn't stay open on their own. The development of artificial surfactant therapy, funded by the March of Dimes in the 1980s, ushered in a tenfold decrease in the number of babies who die from RDS (respiratory distress syndrome). Three doses of surfactant and five years later, Charlie's not only alive but thriving, the only artifact of his prematurity an occasional touch of asthma.
And to me, that's still not a miracle; that's science and luck. The miracle is the generosity that makes it possible. From the development of the polio vaccine to pioneering work in gene therapy, the March of Dimes has made lifesaving advances in research and practice through its supporters' contributions. I feel humbled by those who volunteer or give or walk. I feel staggered by our good fortune when there's still so much to do, so many babies who try but can't survive, so many children lost. Every time I harangue my older son, that gorgeous wheezy complainer, that former 29-weeker, that obstinate rub-breathe-stopper, into sitting still to use his inhaler, I feel grateful for the gift.
To those of you who've given to the March of Dimes, thank you. To anyone who'd like to help, please do. And if you have something to say about how prematurity has touched your life, please tell us. I'll contribute a quarter to the March of Dimes for every story shared. (One comment per person, please.)
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NICU nurses helped my 31 week twins come home healthy, after five weeks, and easily saved my sanity. They made those five weeks bearable and helped me and my children in innumerable ways. Thank you, NICU nurses everywhere.
I'm sure sometimes it hurts to remember, but it's certainly important to never forget. I'll donate, in honor of you and Paul and Charlie, and those who didn't have someone willing them to breathe.
Please, please donate. I watched my friends struggle with their 24-week triplets, one of which was lost to necrotizing entercolitis. They raved about the NICU nurses and doctors, about how supportive they all were, and how they helped keep it all together. Their two boys are now almost 2 years old, and happy, healthy guys.
Please give to the March of Dimes. It helps give many more families a happy ending.
I was born at 30 weeks, nearly 35 years ago. I didn't have surfactant. They told my parents I wasn't going to make it. After six weeks in NICU, miraculously, I came home.
I'm pregnant now with my first child -- planning to induce (for health reasons, long story) at the end of next week. Stories like the one you just told are always powerful for me because of my own history, but as I imagine something this scary happening with my own child I am seized by a clench I can't begin to describe.
Thank you for sharing your story.
I have twins. When I found out I was carrying twins, I did what any book nerd would do, and read every single thing I could on the subject. I became as much an expert as a layperson with no medical background could be.
The one thing that seemed certain? These children would be born early. Most twins are.
At 26 weeks I spent two days getting a hormone shot that would help the babies growing inside me develop their lungs early.
At 35 weeks they were born.
My daughter had been practice breathing on her own for a week or more by then. My son was less lucky. Although he was the bigger twin (born 6 lbs .3 oz to his sister's 5 lbs 4 oz) he was a boy. He was born first, but I didn't hear his cry.
When he was taken from me in an emergency c-section he wasn't breathing at all. He was blue and unresponsive. Nurses and doctors massaged him. They gave him oxygen. His cry finally sounded after his sister was born. He cried first, but only by a second or two.
My daughter was handed to us near immediately. My son was shown to us and then ushered off to the NICU. He was given antibiotics through a line that was pure tape from his tiny little hand to his shoulder. He was hooked to oxygen and had a sensor on his foot that seemed to go off every few minutes.
Yet. Yet...
He spent one and only one night in the NICU. The next day the doctors deemed him healthy. Capable of living, of joining his sister in a tiny bed next to mine. His lines would stay in, but his oxygen wasn't necessary anymore.
Three days after being born, my 35 weekers came home with me. They had a few more problems, but all of them have been solvable. We had one more hospital stay at two weeks when he continued to lose weight instead of gaining back what he started at.
Not bad. Not bad at all.
They are a year old now. They walk around the house carrying their toys and crowing happily. They giggle when I blow on their tummy. In short, they live. They live when so many other babies in their situation didn't.
I'm not special, I'm lucky. They received care using the collected knowledge of years of research into preemie babies. This research was mostly done by the March of Dimes. All of it was inspired by them, though. The March of Dimes said "no more" to babies being born who didn't survive. They've worked at eradicating the many disabilities faced by premature babies half a century ago. They didn't accept that that was just how things are, they fought.
I can't help but feel that they fought for my babies. I can't help but feel grateful when I hear my son screeching joyfully when he was so silent at birth. I can't help but feel grateful when I see my daughter look at her brother and simply giggle with happiness at the mere sight of him.
All mothers should be so lucky. The March of Dimes is working at making that true. Already it's true for more than ever before.
Thank you, March of Dimes.
My only very personal experience with prematurity, was being born at 36 weeks back in the 70s. I don't remember much, but apparently my mom thought I was deaf, blind and mentally handicapped.
My very good friend had her little girl at 24 weeks. I didn't meet her until her daughter was 4 and it was a very new idea for me. I was not thinking about babies, much less the things that could go wrong. Her daughter had a feeding tube in her stomach because she refused to swallow. They did extensive testing and never came up with a physical reason for it. To this day the daughter (now 10) refuses to swallow any solid food. It is amazing that this little girl has lived and is mostly thriving.
What a great post.
My March of Dimes thought is provided by a Baby Boomer who was stricken by polio and suffers with diminished mobility and other artifacts of his illness. He says, "If the March of Dimes were the March of Quarters, I might be able to walk!" Nevertheless, they've made significant contributions for a very, very long time, and every little bit counts.
Every time I think I've said something well, you say it so much better.
Our NICU rocked in terms of those babies who were all by themselves - friends of ours adopted a 25(ish)-weeker whose Mom used during pregnancy and the NICU let them in to be with her long before they were anything like her official parents. (It might have helped that they were already the adoptive parents of two of her older kids.) More than once I saw moms in cuffs shuffling through the unit.
I have twins that were born at 36wks--we were lucky, they didn't need NICU time. But, I did have the steroid shots to help mature their lungs, because I kept having pre term labor episodes.
But I have a friend who was born maybe 2mos early? about 36yrs ago. He had a twin sister and she didn't make it. He had some ROP, and still has to have special eye appts to keep track of his barely attached retina. He also had heart surgery, (Im guessing PDA, but I dont' know details) when he was a toddler due to some complication of prematurity.
Im also grateful for the scientific advances that made it so my 36weekers were kept in until then, and healthy and able to go home with me 3 days after they were born.
I had my first placental abruption at 35 weeks and my son was born by emergency c-section during the night I reached 36 weeks. By then I had developed HELLP Syndrome so I was lying on my back, immobile and covered in vomit, while he was wheeled off to NICU. He was IUGR, so his head seemed larger than his scrawny body. He didn't cry.
I remember that long night in critical care, willing my kidneys to work and trying to imagine what was going on in a room across the hospital. I remember my husband coming to me and saying, "I've never stared at a baby for three straight hours before." I remember the first time I met him. A nurse wheeled my wheely-bed through the NICU. I scrubbed my hands with alcohol rub, held him for a minute and told him I would do anything for him.
The thing that has never left me is the fear. People talk about life with a preemie as a roller coaster, but it's more like bumper cars. We ricocheted between elation ("they say he's coming home soon!") and soul-burning despair (setback after setback.) I developed the conviction that if I left the hospital before he did, even to step outside for a moment for a breath of "fresh" city air, I would be sealing his fate. My husband and I became like mole people, sleeping in vacant patient rooms after I was released. My mother urged me to take a walk and I broke down sobbing. There were no degrees here. Either everything would be all right, or it wouldn't. He would come home with me, or I would be launched into catastrophic despair.
The turning point for me was when my OB suggested another blood transfusion (for me). I felt indifferent; who cares about your own health when your child is sick? She said, "you need to get this before you go home, or you could get up during the night to feed the baby and just fall over." I realized then, and for the first time, that she actually expected him to come home with me. Until then, I'd believed that everyone thought he was going to die, but didn't have the heart to tell me.
When we did go home, I was grotesquely swollen with IV fluids and our baby needed to eat almost every hour and sleep in a room heated to 80 degrees. I was determined to breastfeed exclusively to compensate in some way for the lousy job of feeding my body had done in utero. (more superstition!) Our lives were a blur of exhaustion, pumping, and bottle-feeding since our son wasn't strong enough to actually breastfeed. I remember being excited when the nurse came to visit and feeling grimly victorious every time he'd gained an ounce.
Our son is six now and I feel battle-scarred. I don't think you ever forget that kind of fear. The crazy thing is that his entire NICU stay lasted less than two weeks. I am in awe of parents who survive that ride for months on end.
I feel a strong and burning anger towards the OB who sent me home during my first abruption ("you're not in enough pain to be having an abruption,"), the same for the OB who suggested I wait a day to induce labor after an u/s showed he was IUGR, the same for myself for being foolish enough to lie bleeding on the gurney for two hours like an idiot while I waited politely for someone to perform a c-section during the last abruption. (I thought that if they liked me, they'd take better care of my baby.) Basically, the whole experience turned me from a rational human being into a superstitious peasant straight out of the 15th century. Free range kids? My kid's lucky I don't spit over his head and make the sign of the evil eye over his head every time we go outside.
My mom has 6 grandkids. The bookends are a 26 year old woman, my nice, and an 18 month old boy, my son. They are also our NICU babies. She was born on Valentine's day, at 3 lbs 10 oz at about 30 weeks, and req'd a ventilator. By the time he came along, the NICU walls were lined with pictures of kids who were less than 1/3 her weight at birth, but survived. She uses an inhaler now and again, but our miracle gal has now run more marathons & half marathons than anyone can remember.
My son was born on Mother's Day eve his low blood sugar issues earned him a 25 day stay in the NICU which began on day 2 of his life, my first Mother's Day. The first 'heel stick' they did to test his blood sugar, I branded torture. Little did I know that learning to torture him myself would be a condition of bringing him home. By then, when he felt the blanket drawn back, he knew the routine and would proffer his little pincushion of a foot. Ultimately, though I started fumblingly and feared having to take him back to the hospital, I became so good at it that I could test his blood without waking him. Thankfully, that process and accompanying meds and hi cal formula became unnecessary within a few months.
My big challenges now are keeping him out of the street, and in the crib whose mattress always seems to need lowering 5 minutes after I've just lowered it. I count my blessings, among them a first rate hospital and fabulous NICU staff that were there for us even as I accused them through my tears. God bless them one and all.
i was a preemie 35 years ago and spent the first few weeks of my life in a nicu. this year, i gave birth naturally to a healthy boy 24 hours before his due date. hope & progress.
i also just learned this when i went to march of dimes to contribute:
MasterCard will match donations made with a MasterCard card up to $225,000 in total from November 1-December 31, 2009.
Our twins were born at 34 weeks and I still have a hard time thinking about the 17 days and the 24 days they each spent in NICU.
I don't have hardly any positive feelings about there birth. Yes, I know they were born into this world and now I have the children I've been waiting for. But the time in NICU was so dreadful. Every other visit had a set back those first two weeks. Every call at night from the hospital freaked me out.
It's only reading your account that I realize that I still denying their time in NICU and the role the March of Dimes has played in their recovery because it still too damn painful for me to think about it.
One of my best friends had her twins at 25 weeks. They are 2 1/2 now, and you would never know they spent the first few months of their lives in the NICU. This same friend just had another baby last week - at 34 weeks gestation. He didn't even have to be in the NICU at all. We have so, so much to celebrate.
Wow. This has never been easy for me to talk about... but if it makes even the teensiest bit of difference...
I've been extraordinarily lucky; in conceiving my twins, in carrying them to 36 weeks, despite significant contractions starting at 18 weeks; in my little boy's amazing recovery and good health.... When they were born, my little boy was taken by ambulance to another hospital because his lungs weren't developed. A million-and-one difficult details later, he is fine now, thanks to surfactant. We were among the very, very lucky ones, and I'll never forget that. No infections, no major stumbling blocks (just the standard blown-out IVs and "normal" occurrences of things like heart apnea)... Without surfactant, though, I'd have a very different story to tell.
Thank you for what you're doing, Julie. And for everything you've done.
As a preschool and kindergarten special ed teacher, I helped a lot of *miracle babies* catch up, and oh boy, did they! We had a 25 weeker who wasn't even eligible for the program, just PT. His mom had been told he probably wouldn't live, and certainly wouldn't walk or talk, and yet there he was at 5 years old, not only running, jumping, climbing, but talking BACK with all the sass and fire a 5 year old has in him.
I had a 23 weeker named, aptly, Miracle, and 29 week twins who dressed identically down to their socks and told me, after using the potty, "Mommy likes our shirts tucked in".
Oh, and my boyfriend, all 6', 180 lbs of him, was 3 lbs at birth.
My IVF twin sons were born at just short of 33 weeks. My little guy had IUGR, but his bigger brother went on the vent first, because he was less prepared for the early arrival. It was a very scary time for me, but the amazing staff in the NICU helped calm my fears during our 5 week stay, and I am forever grateful to them. Seventeen years later, I'm lucky that our biggest problem is working out who gets to drive the car they share.
Not a day that goes by that I don't realize how very blessed I am, but today I support the March of Dimes in memory of the beautiful Maddie Spohr.
There is so much more work to do.
I don't have a preemie story but I have a NICU story. My daughter didn't make it -- it's never good when you walk in at 6 am and the tech running the MRI is crying at the monitor. I have nothing but good things to say about the staff there though and here's what made the most difference to me: Although it was fairly clear from her arrival that my daughter's case was not going to be a happy outcome the nurses put themselves out tremendously to be sure that we, as parents, had time to hold her and to participate in her care - to be parents, that is. They made a tremendous difference in my husband's and my willingness to put ourselves forward again. We fully support the work of NICUs and the March of Dimes for sure.
We were so fortunate to make it to full-term and deliver a ridiculously healthy baby, but I had subchorinic hematomas from very early on in my pregnancy and was told that preterm labor/miscarriage was a constant possibility. I lived on the MoD website, "Ok, if we make it to 26 weeks, what are the chances he'll live... What if we make it to 31 weeks?" MoD has SO much work to do, so here's my $.25 worth.
Yay, Science!!
My twins were born at 27 weeks and were septic. We didn't get to bring them home, but I'm still grateful for the nicu staff that cared for them during their short lives.
My brother was born in 1977 with lungs not fully developed. No one is quite clear if he was early or if the dates were wrong or what. There wasn't surfactant then. He spent the first 26 days of his life in the NICU hooked up to a respirator. His lasting legacy is his chronic bronchitis.
Today he is married, with a son of his own.
But he's alive thanks to the doctors and nurses who kept him alive.
Thirty-eight years ago, my mother discovered she was pregnant and couldn't find a doctor that would deliver her. She went to four doctors before finding one that didn't tell her to abort (Diabetes care has come a LONG way) and ended up having one of the first amniocentesis procedures to test lung maturity on her child before she had a c/section. Her doctor did a 'swap' with the doctor running the study - he'd give the doctor access to another of his patients if he'd take my mother along and let my mother in as a test subject - it is through this that I am here now.
We support the MoD however and whenever we can - for without breakthroughs like that, I wouldn't have been able to have my own little NICU miracle. (She's five now.)
A fabulous post, J.
I was just looking at this picture. My sister's birthday is tomorrow. 15 years ago today-ish, my step-mom was diagnosed with (I'm assuming) pre-eclampsia. I don't know much about the details, as my father is not all that keen on sharing, well, anything, so we didn't even know she'd been born until several days after, when we were supposed to be visiting them, and got my aunt instead. That's the day this picture was taken - she was 3 days old. Due in late January, born November 18th (30 weeks? ish?). She spent quite some time in the NICU, and then spent the first 5+ years of her life battling pneumonia over and over again because my dipshit father wouldn't get rid of the dog she was allergic to (that caused allergies -> colds -> bronchitis/pneumonia that her immune system couldn't fight off).
But tomorrow, she'll be 15 years old. And that is still nothing short of amazing.
My own wife was born 2 months premature, 27 years ago. She has eye problems, heart problems, and other issues. But she is here, and she is thriving.
I so wish I had the idea when I wrote my post today. Our NICU story was much easier than most but the information provided through MOD was a lifesaver for us in the early days of our daughters birth.
I also saw several babies without anyone ever standing beside their beds, taking them out to hold them for long periods of time as well. The nurses did the best they could but there was never a mother's touch.
It made me sad too.
I have no story! I am lucky and I know that.
Yes we went through hell to adopt one child and birth another. Yes we still go through hell daily with all of my older son's problems.
But I am so thankful that I have never had to sit by one of my children and wonder if they would live or die.
And that is why I donate to the March of Dimes, because every parent should be as lucky as I was.
What a beautiful post.
I actually found your blog by doing a search for preemies. Our son had been born at 29 weeks and I was looking for some support.
Our little guy spent 56 days in house (at the hospital I work for) and to this day I can't walk into the 3rd floor stairwell. I remember my husband and I holding it together long enough to find that alone space before holding each other and breaking down. That was the night we were excited that he "only" had a staph infection and that it wasn't a new brain bleed.
I also remember the empty spaces next to the isolettes where noone came to visit. Our NICU has a volunteer program where you can come in be there during simple procedures and do skin to skin with babies whose families are unable or unwilling to be there. I know someday I will be one of those volunteers.
So we raise money too and we walk every year. And everytime I look at my practically perfect almost 4 year old, I thank my nurses and my science and the March of Dimes. I have a smart, funny amazing little guy and they helped him make it.
A perfect post. Thanks for writing it.
My son was born at 31 weeks, weighing 3 lbs, 1 oz. We were lucky—he never needed the ventilator, just a little CPAP and then a nasal cannula, even though we'd only had time for one steroid shot to hasten his lung development. He was in the NICU for 40 days and went home as a 5-pounder.
Many other babies in the NICU with him had a rougher time of it. One family had twin boys at about 28 weeks and lost one to NEC. Another family's daughter was born at 26 weeks weighing a pound and a half; the mom had a complete placental abruption while shopping for groceries, which makes one wonder if she should've been put on bed rest after an earlier partial abruption. I just saw that girl on Halloween—she's a tall, healthy, and spunky 9-year-old now. She was in the NICU for nearly 4 months and battled pneumonia and difficulty weaning off the ventilator, but you'd never know it to see her now. She doesn't even need glasses.
Today, my son's a healthy and energetic 9-year-old in the 75th percentile for height and weight. His feet are only a half size smaller than mine! He's a beautiful boy.
I clicked the lavender March of Dimes box at the top of this post, but felt it was cheesy to have to create a "virtual band" of virtual rubber with my kid's name on it. So instead I donated via the March of Dimes' generic donation page. It's not specifically the "fight for preemies" campaign, but hey, everything the March of Dimes does is worthy.
My twin cousins were born early (I'm embarrassed to say that I don't know exactly how early) due to my aunt's pre-eclampsia. They were teeny tiny, but they were fighters, and I was thrilled to have them as my flower girls when they were 5 years old. They are now nine and with a mom who is 6 feet tall and a dad who is 6' 5" I'm thinking they're going to be gorgeous Amazonian women! And I thank the medical industry every day for that.
My water broke-- with no warning at all, after a textbook low-risk pregnancy-- at 34w 1d. Arriving at the hospital, they couldn't find my son's heartbeat. They tried for close to 10 minutes as I lay on my back trying not to die or pass out, and finally realized the machine was broken. After that, I wouldn't let them even turn down the sound on the continuous monitoring.
I had a 4 day labor induction-- and a doula who stayed with us the whole time!-- and finally gave birth to an almost 6 lb. son at 34w 5d. His lungs were mature, but he struggled with jaundice and desats and stayed in the hospital for a week after his birth. He was in the CCN, the "step down" unit from the NICU that whole time, and they took incredible care of him.
I was holding him for his first desat, and I couldn't tell anything was wrong when the alarms went off. The nurse had to grab him from my arms to stimulate him into breathing again. Julie, I'm with you. There is no fear like that.
Our little guy is almost 10 months old now, crawling and standing, nursing like it's no big deal (it is), and just radiating his amazing sunshine and joy. His only real lasting effect of prematurity is that he's super skinny, and still needs to eat almost every 2 hours around the clock. Not bad, considering.
I am so grateful for the science that kept track of him in utero and out, and let me take home my skinny little yellow baby and turn him into a giant (albeit lanky) almost-toddling kid. We're about to send a holiday card to the hospital staff, and I'm making sure it includes a picture of us the parents as well as the baby. There's no way they would recognize just him.
Thanks for reminding me to think about this-- I'm going to go make a donation to the MoD right now.
My b/g twins were born at 32w1d. I had a placental abruption with baby b (my son). They spent 7 weeks in the NICU and came home on March 24, 2004. They are now 5 1/2 and healthy. I was lucky as they were basically just feeder/growers. We didn't have any brain bleeds or infections. I second your accolades for all the nurses and doctors and volunteers. They are so amazing.
But, I am still, five and a half years later, so damaged from the experience. For a couple of years after my twins birth if I saw a preemie on TV I got sick to my stomach. My twins are my first, last and only children so that was my one experience. And, even though I know that having healthy, thriving children is such a gift and that so many people don't get that happy outcome, I'm still sad that their birth was an emergency c-section followed by seven long weeks in a level three NICU. It was so scary.
Beautiful as always. My aunt, born in the '50's, with immature lungs and before current available medical technology, perished days after birth.
As I write this my IVF twins are chasing one another though the house hollering at the top of their little lungs. All thanks to the March of Dimes and surfactant. Born at 31 weeks due to pPROM, both required 2 doses of surfactant. Thanks to the March of Dimes and that medication, along with steriod treatment pre-delivery, both were only on a vent for about 24 hours. Then C-pap for about 3 days. After that we were lucky, they were deemed feeder-growers and bumped to the lower level NICU. Still the nurses were incredibly kind as our home life was a wreck (they arrived just as we were to move across the country). It is a time in our lives we will never forget. We saw the anguish of many parents who weren't as lucky. We are forever grateful.
We have pledged to walk every year as a family to show our support. This past year we walked with the twins and their big brother. He didn't quite understand, but as he gets older I hope he will embrace this cause and give thanks for the science that enabled his little brother and sister to survive to scream and steal his toys.
My story doesn't have a happy ending. My nephew was born at 25 weeks 6 days. He had gastroschsis (a hole in his abdomen allowed his intestines to hang outside of his body in a sac) so there were many complications. He died of sepsis at 5 days old.
There's a Connor-shaped hole in our family's lives.
We didn't need ART to conceive our son, just a lot of time, but thanks to my bicornuate uterus, only discovered after I was already pregnant, he was born abruptly at 30w4d. I'd had the steroid shots at 26w, but he still needed 3 days on the vent, 2 doses of surfactant, and nearly died the morning after he was born. Luckily for us, he had wonderful doctors from Children's Memorial in Chicago, and was off all breathing support after a week. He spent 40 days in the Special Care nursery, the only long-term baby there during his stay.
Now he's 2 years old and the only signs of his prematurity are his small size and his asthma.
We donate to March of Dimes every year, although my DH gets annoyed with them. He grumbles frequently about how much of our donations goes into sending us mailing labels and notepads.
16 years ago my cousin was born very premature and lived only a few months. I'm so grateful that my aunt and uncle allowed the cousins that were old enough to come into the hospital and meet him. I'll never forget my uncle teasing that he saw me pinch him. They later adopted two sons and were able to have a biological daughter, too - who's called the Miracle Baby.
Also, earlier this year I started volunteering with CASA (http://www.casaforchildren.org/site/c.mtJSJ7MPIsE/b.5301295/k.BE9A/Home.htm), my latest case being medically fragile twins, born at 26 weeks. Please add to the list of people to thank foster parents that take the extra effort to provide stable and loving homes to those babies that don't get many or any visitors in the hospital. To see these kids with multiple disabilities adopted (as is my hope and foster mom's hope) into a stable loving home is going to be priceless!
Absolutely beautiful Julie. Just this weekend, while we sat at PF Chang's, one of our NICU nurses came up to us. She remembered us, by name. She remembered our son's name. And she teared up a bit when he told her that he is 4 years old now. She told us how perfect he is, how beautiful. And we all got a bit quiet as we remembered his start at 29 weeks. They remember us because we, like you, breathed for our child when he couldn't. I spent at least 12 of every 24 hours sitting in that NICU for 53 long days.
And now every year, we walk. I volunteer with our local MoD and have been on the walk planning committee for three years. In my first year on the committee, my family spoke at the fundraising kick-off breakfast, the squirming lowercase in our arms.
I pray that I will never again need the services that their research has provided. But I thank God every day that their research continues, that new therapies are being provided.
Thanks to ART, I got to have my twins. Thanks to the March of Dimes, I got to keep them.
I'm one that wasn't so lucky. My little Noah was born at 23W6D following PROM at 23W4D. He lived for 25 hours, and he died in my arms. Those 25 hours are the most precious hours of my entire life, and without the March of Dimes, odds are I wouldn't have them. I celebrate when I hear the success stories, but I will always be heartbroken for the little boy I never got to see grow up.
My NICU experiences have been quite different, both from each other and from yours. Our first was a 7 hour stay for our daughter, who was a 42+ weeker, due to lack of oxygen and meconium aspiration (12 hour labor followed by a ruptured uterus and a not quite quick enough STAT c-section). The NICU staff tried everything they could, but were eventually unable to save our daughter whose first four apgars were 0, 0, 1, and 4.
Our second NICU experience was slightly longer, 4 days, but was really just NICU-lite. Our son was born at 35w5d in a scheduled c-section. We decided with our perinatologist and OB that we should deliver before 36 weeks to limit the risk of another rupture. I had two steroid shots at ~31-32 weeks gestation. Our son was born weighing 8lbs 5oz, but needed a day of CPAP to help him clear fluid from his lungs.
I am incredibly grateful that my uterus was repaired so I had the option of having another child. I am incredibly grateful that we had the option of getting steroid injections to ensure that his lungs were close to mature. I am incredibly grateful that a day of CPAP and three days of monitoring is not a “big” deal in the NICU, even if it is scary when you are the parent of that baby.
Our son shared a room in the NICU with a co-workers quads born ~28 weeks gestation. They were in the NICU for quite awhile, but are now thriving two year olds just like my son. I am so thankful for all of the progress that has been made to allow so many parents to have a happy ending to so many of their pre-term deliveries.
Only be the grace of God do I not have a premie story to tell. However, yours was a beautifully told story.
I don't have a story about premature birth, but my father was born in 1946 and contracted polio disease a few years later. He lived in rurarl Louisiana but was able to go to New Orleans and get treatment. 50+ years later, he still walks with a limp, but otherwise is totally healthy. I remember watching a documentary on the polio vaccine and how people sent in their dimes from all over the country in support of it. I'm so thankful that children are not still suffering from something so needless. Thank you for all that you do.
I'm a weepy, wet mess after reading these stories, and I can't believe the strength of these parents.
My son Hank was a huge, full term baby at 9lbs3oz. Just before, a friend delivered her son Huck, 6 weeks early. He was Hank's little inverse twin at 3lbs9oz.
We called them Hank the Holiday Ham and Huck the Holiday Yam.
Both are healthy chunky babies now, and you'd hardly know they had such different beginnings.
This post and all the comments made me cry. My baby wasn't premature, but we walk for the March of Dimes every year for babies that are, and because I realize that we were just lucky, not special.
My brother was a premie - I dont remember or know much about that time since I was only 2 years old. But my sister who is a NICU nurse loves her job and those little babies. I'm so happy that my brother and Charlie are alive and well today! :)
My youngest son, now 2 1/2, was born at 34 weeks and spent 2 in NICU before coming home. He was delayed for a long time (didn't walk until 20 months), but now is healthy and smart and will soon be bigger than his 10-months-older brother. We are so blessed. But I will never, ever get over the terror of that two weeks, and my little Bruno is the one I hold the closest. My hearts go out to all the families whose babies didn't come home.
I should not have read this. I am pregnant again, and the thought of ending up back in NICU is haunting.
Both of my sons were preemies. My older son was born 8+ years ago at 31 weeks 4 days. Thankfully my water broke 5 days before he was born and I was able to get the full course of steroid shots. He weighed 4 lbs 7 oz at birth and cried immediately. He spent 2 weeks in the wonderful NICU (with the typical preemie stuff, iv/cpap etc) and then came home with us, healthy as a horse.
My younger son was born 4 1/2 years ago at 32 weeks, again with the PPROM. Happily again I received the full course of steroid shots prior to his birth because I started dilating and was put on bed rest at 27 weeks. He weighed 4 lbs 12oz and cried right away. He spent 3 weeks in a different and equally wonderful NICU (also with the typical preemie stuff, iv/cpap etc)and then came home with us, healthy as a horse.
There is no way to describe how grateful we are to modern science and the March of Dimes and all NICU professionals everywhere.
I'm fortunate to live in the Toronto area, home of the world-famous Hospital for Sick Children. Everyone knows stories about the "miracle babies" who are treated there, the preemies and ones born with congenital problems. They don't hear the stories about the babies who didn't get to go home. I've met many parents of babies who died at Sick Kids through our pg loss support group, and even though they didn't get to bring their children home, most of them still rave about the fabulous care their children received there. Thank goodness for hospitals like Sick Kids and organizations like March of Dimes.
The March of Dimes did lots to help care for my aunt when she had polio over 50 years ago. MoD covered virtually everything and were always there in support. When I was a child I used to raise money for them by reading books - my parents complained I would 'send them to the poorhouse' at 25 cents per book, but really they paid up happily.