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11/14/2006

30

You think it can't happen to you is what a lot of people say when they've been blindsided.  The fact is, I thought it might, and feared it would.  Throughout our pregnancies, Tertia and I had been chanting to each other, "Let's just get to 30 weeks."  28 weeks, we knew, was the threshold at which the great majority of babies born early survive.  But we knew of a woman who'd recently had her baby at 28 weeks, a baby who did not survive.  "Please let us make it to 30," we said, to no one in particular.

This was not your garden variety pregnant infertile neurosis, either.  We knew we had reason to worry.  In her most recent pregnancy, Tertia had lost her twin sons — Luke at 21 weeks, and Ben, born alive at almost 26 weeks after premature labor.  And I, at 28 weeks, still had complete placenta previa, which carries the very real risk — 50% — of a preterm birth.

I did not make it to 30.  Charlie was born at 29w5d — close enough to 30, I initially felt, as to make no difference.  This was an impression that his neonatologists quickly and unceremoniously corrected.  It turns out that every day matters.  In Charlie's case, an extra 48 hours might have bought us the chance to mature his lungs before birth with steroid shots, thereby changing the course of his stay in the NICU.  More seriously, in the case of a baby born on the very cusp of viability, it means the difference between a chance at life and a quiet death.

I did not make it to 30.  And although I thought I'd known what to expect, having feared it before it happened, the reality wasn't even close.  I knew, thanks in part to your stories, what the barest sketch of our experience might be, but we worked in the details ourselves, through 42 days in the hospital, many anxious months after homecoming, and moments that still hit me now.  The tangible effects of Charlie's early birth seem limited at this point to a gross motor delay and a touch of asthma, both now of near-insignificance.  But the intangibles still linger.  (Do you ever get over your child's doctor saying, "Wow.  We thought we might lose him"?  What can you say besides, "Yeah, we thought we might lose him, too"?)

I did not make it to 30.  My illness set in quickly, and once it did there were no other options.  "We have to take the baby out."  "No time for betamethasone."  "You'll feel like you're falling, but you're not."  "We don't have a crystal ball." 

Although some women are known to be at greater risk for delivering early, others have no warning.  Although some causes of prematurity are understood, many are not, and many more cannot be mediated.  Women like us, when we do get pregnant at last, are often at higher risk for an early birth than the population at large.  You think it can't happen to you, but it could.  I feared it might, and it did.

We got lucky.  So many others don't.  Please think of them today.  I do, every day, as I watch with  baffled gratitude as Charlie grows and flourishes.  Because we thought we might lose him, too.

Posted by Julie at 12:06 PM in Mama drama | Permalink

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Comments (66)

Some of my doctor friends came out of the obstetrics part of their course swearing they rather emigrate to a third-world country (ie let their baby die rather than go into NICU) than have their baby before 30 weeks. At the time, the viability age in Britain was 28 weeks, so their opinion seemed rather harsh.

Since then, I've understood quite how much a difference a few short days can make.

As a reader of three years' standing, I remain deeply thankful that your little Charlie made it.

Posted by: e at Nov 14, 2006 12:18:34 PM

I just saw this article (http://www.dailymail.co.uk/pages/live/articles/news/news.html?in_article_id=416003&in_page_id=1770)and it seems to relate to today's post. The article is about the Church of England suggesting that you should consider not giving treatment to premature babies even knowing it will cause their death. The cost of treatment is one concern they note. The article also says that in Holland no treatment is given to babies born before 25 weeks. I have a five year old son, born the day before his due date and am currently (finally) 12 weeks pregnant after secondary infertility. So I haven't faced a pre-term birth and I hope desprately that I won't have to, but the idea that you would automatically not give any treatment to a baby born before a certain date really bothers me, especially if you're doing it just because of the cost. I would be curious to hear from women who've been there what they think about it.

Posted by: Christa at Nov 14, 2006 12:36:47 PM

In my daughter's two years of cancer treatment, never once did I hear, "We don't have a crystal ball." When you first mentioned that comment it didn't sit well with me.

It still doesn't.

Posted by: Paula at Nov 14, 2006 12:43:34 PM

As the mom of a child born on that cusp, I think of those moms every single day. Especially the moms who had their children later in their gestation that I did and those children have more ongoing issues than my own.

I tell my husband now that if we ever have another baby, all I want is to get to 30 weeks. I can't imagine what it actually feels like to "look" pregnant to others seeing as I never made it into maternity clothes LOL.

Posted by: Nancy Walsh at Nov 14, 2006 12:54:54 PM

It didn't sit particularly well with me, either, Paula, two days after Charlie's birth. And, imagine that: it still doesn't!

Christa, thanks for the link. This is a question that's hotly debated in medical and ethical circles. One neonatologist's take is here, here, and here. (His whole blog is well worth reading.)

Posted by: Julie at Nov 14, 2006 1:00:25 PM

Charlie is beautiful and amazing. I am thinking of him today, and for the rest of this month. They have balloons (those construction paper hot air balloon things you put names on and put on display)you can buy at our local baby superstore for March of Dimes this month. I purchased two and put my sons names on them, even though they were born whopping and at full term. ( which I thank my lucky stars for, every day). They turn 1 on the 29th, so I will be going back to purchase birthday presents soon. This time, I'm getting a balloon in Charlie's name, if that's ok.

Posted by: Chickenpig at Nov 14, 2006 1:23:19 PM

My God, Julie. Even knowing about Charlie's birth, I laid in bed nearly a year later saying "If I just get to 30, everything will be fine. Babies are fine then." And then my lowercase came 29 weeks 4 days. I'd been able to get the steroid shots and his lungs were strong. Yet we spent 53 days in the NICU with a baby who kept growing longer, accumulated no body fat, and couldn't regulate his own temperature.

I thank God every day that he made it through. And I thank God that Charlie made it before us. And then I thank God for you. Without you, I don't know if I could have been so strong through it all. The world would be a better place if there were more people like you.

Posted by: Miss W at Nov 14, 2006 1:38:18 PM

I think of those moms all the time.
I went into pre-term labor at 29-1/2 weeks.

My doctor caught it in time. I was surprisingly calm. After an overnight hosptial stay, I was sent home on bedrest and medication for the rest of my pregancy.
I look back in disbelief that I attended my sister's wedding less than a week later (I was the maid of honor and didn't have the heart to burden her or my Mom with my "bedrest order"). I had my doctor's okay --- "no dancing". I sat through the ceremony praying that I would make it through without a major contraction episode...

My son will be two a week from today. There were a few more scary episodes of contractions, but I made it past my target of 34 weeks and delivered at 37-1/2 weeks.

I consider myself VERY lucky. If I ever get pregnant again, you won't see me at a wedding.

Posted by: Nina at Nov 14, 2006 1:38:59 PM

Reading today's post smacks of irony for me, as today is my official due date. Here I sit wishing, praying, hoping for contractions that are progressive and strong (so far it's been intermittent and anything BUT progressive).

After considering the viewpoints of the post and the comments here, I realize that I should be counting my blessings that my baby and I made it to today. It is amazing what just a few days or weeks can do when considering the development of an unborn child, especially before 37 weeks.

I know how freaked out I was when my OB gave me the "viability chat" at 24 weeks. He explained to me that a baby at 24 weeks was barely viable, and that every effort would be made to stop my labor if I went into pre-term labor. He also explained, frighteningly, that there is really no understanding of *why* women go into pre-term labor. Just the mention of it made me fearful for my baby's life.

As a long-time reader of this blog, I know how relieved I was (even before I was pregnant) when I read here that Charlie had come home from the NICU. Oh, and the links to the neonatologists' blog are great - it's an interesting perspective, to say the least. Thanks for the great source of info.

Posted by: S at Nov 14, 2006 2:06:34 PM

I think of those families every day too. Thank you for reminding others how precious and precarious life is. I went into labor at 27 weeks with my twins and remained in a labor and delivery room (thankfully) contracting every hour until 33 weeks. I know that even with 6 weeks hospitalized, I am so lucky, because I have healthy 3-year-olds now. Keep sharing your experiences so not everyone thinks that "What to expect when you're expecting" covers it all.

Posted by: Beth at Nov 14, 2006 2:55:06 PM

When I was pregnant, my goal was to make it to 32 weeks, per the advice of a friend who was a NICU nurse. I made it to 31 ("And a half!" I'd say—but the NICU folks didn't count that half week) weeks, which was pretty good and not too scary, all things considered, but Ben still had a 40-day stay in the hospital. He had a speech delay and he's got some cognitive quirks, but most kids with similar issues were full-term, so I don't know that his prematurity had long-lived effects.

I have a crazy aunt who opposes March of Dimes because she thinks "prevent birth defects" means "abort! abort!"—which really isn't what the March of Dimes is about.

Posted by: Orange at Nov 14, 2006 3:23:37 PM

When I was pregnant with my son the thought of prematurity never once crossed my mind. While I was high risk due to Rh incompatibility I was blistfully unaware what lay ahead.

My son was born at 30 weeks and even though I had two shots of steroids to help his lungs to mature it didn't help him any. Two complete blood exchanges, numerous blood transfusions, and pumped full of drugs ... the only response I ever got out of him was that he would wiggle his foot when I brushed my hand over it.

He lasted not even 2 days. My husband and I came home with our arms empty and in complete shock. Never had any one ever told us of the possibility that he might die. I always thought the neonatologist was being overly cautious .... and afterwards, our perinatoligist was a total asshole (in the worst way possible).

All of this said .... I just wanted to say thank you.

Posted by: Michele at Nov 14, 2006 3:38:17 PM

I have been reading your blog for years now, and have rarely made any comments, although we have SO much in common. After 3 years of infertility and a successful IVF, my cervix started opening at 21 weeks. I was on bed rest for the next 5 weeks, just hoping to make it to 28 -- 28 weeks was my magic number! I was on strict berest -- no showers, no couch, only up to go to the bathroom, and I was on anti-labor drugs the whole time that make you feel like shit, while continuing to have small contractions. I literally felt like the baby would fall out of me everytime I got up to go the bathroom. Well, finally he did "fall" out of me -- Unfortunately, I did not make it that long, but managed to hold out to just past viability for my dr's standards -- 25 1/2 weeks! Isaac weighed 1 pound and 10 ounces, was in the hospital for 99 days, and came home just two days before his due date. I still have not figured out how we got so lucky with this amazing boy -- he is 13 1/2 months old, but 10 1/2 months adjusted and is doing beautifully. Although we had many of those days and nights in the hospital when we thought he might not make it, he overcame all of the odds -- no brain bleeds, no oxygen needs after he came home, no serious developmental delays (yet), and just a very "normal" acting baby after all these months of worry.

Congrats to all of us with these amazing kiddos!

Erin

Posted by: Erin at Nov 14, 2006 4:07:09 PM

I feel blessed to have carried my twins to 34 weeks, but was still so very scared to have them in NICU. They were so small. It's amazing how naive I still was, even after the years of infertility... thinking "now I'm finally pregnant. This will be so easy."

Thank you for this post.

Posted by: Meli at Nov 14, 2006 4:12:24 PM

My oldest was 5 weeks preterm. I was 22 and terrified. My OB had not "warned" me as he didn't want to scare me. The moments of sheer helpless terror between birth and apgar scores still make me cringe when I think of it. Thank God and modern medicine she was OK as was I. When number 2 came along 9 years later I knew what to expect and that time had made it worse. Knowing didn't make it better. I was put on bed rest two and a half months before my due date, but like the lady who went to the wedding I couldn't skip a friends memorial service. His wife was kind enough to have it in state so I could go though the funeral was to far away. I prayed and I hoped and I made it to 39 weeks by the skin of my teeth. I am thankful for this blog as I never understood how much worse it could ahve been. This place is a real eye opener. You have my prayers everyday as do your children. I wonder how they will ever understand how badly they were wanted and the lengths y'all go to for them. They are lucky kids to have such strong women as mothers.
PS Beth...I hated that book with a passion. An more usless waste of paper I have never read. Number 2's Dad was a first timer and it had him freaked out the whole time.

Posted by: Cindy at Nov 14, 2006 4:25:10 PM

Must learn to proof read.... Sorry.

Posted by: Cindy at Nov 14, 2006 4:26:23 PM

I thought about this today. Today i am 24 weeks, and was at the Perinatologist for yet another scan to make sure that there are no clots developing in the placenta. And i wondered what i'd do, how i'd feel, if this week's scan showed the baby starting to fail. The thought of doing nothing, of not getting him out, is horrible, unthinkable. But the thought of delivering a 24 week, barely viable child is just as bad.

Fortunately, all looked well. And i breathe again, for another two weeks, hoping against hope that the next scan will show all is well, too.

30 weeks. To make it to 30 weeks sounds wonderful. To make it to 34 weeks sounds beautiful. To make it to full term sounds like heaven.

Posted by: Mmm at Nov 14, 2006 4:26:37 PM

I identified more with the "you think it can't happen to you" line. My husband and I are constantly encouraging the uninsured in our family (small business owners) to buy insurance and encouraging family and friends to switch from HMO's to PPO's if they have the option. We hear, "OUR kids are healthy" all the time. Well, so were ours before our 3-yr old was diagnosed with a rare and aggressive cancer. She died 8 months later. In the world of childhood cancer, I heard (from the parents of children who have survived), "God has blessed us. We never gave up. We had faith. We believed." Well, you know what? We were blessed by God too. He gave us the most beautiful wonderful 3 yr old ever! And we never gave up, and we had faith and we believed too. And our daughter still died. Remember that God is good, even when life is BAD. And we never in a million years thought that WE would have a child with cancer. Never. We have 3 other children that we silently worry about every day. We enjoy every moment we have with these precious souls. You never know.

Posted by: Gina at Nov 14, 2006 4:47:57 PM

Ethan was born at 28+3 and is now 27m old. I'm currently 35+5 and the very *moment* I got past 28+3 I cried. Every.single.day has been the most blessed. In a way I feel sorry that mother's who've never experienced what we've gone through can never experience that feeling of blessing every day. I'm so very grateful to have made it this far.

My son, despite coming home past his due date and having a lot of problems (brain damage being the most lasting), is doing great and the thought of not treating preemie babies just because they're a risk or a high cost (his hospital stay cost well more than our house, thank Gods for health insurance!) terrifies me. He's amazing, and if he hadn't been treated the joy he brings us and everyone around us and every day would be gone from the world. That's so very very wrong.

Posted by: Kelly at Nov 14, 2006 5:16:34 PM

I count my lucky stars every day for K. We didn't go through any complications, but don't think I didn't worry every day about the "what if's".
My heart goes out to everyone whose lost a child or come close to it.

Posted by: S. at Nov 14, 2006 5:17:09 PM

47 years ago, my oldest brother was born at 28 weeks. He weighed barely two pounds and the doctors told my father and his wife(not my mother) not to name him; he wouldn't live. 47 years later, he's my hero. He had a wonderful career in the navy, he married and has one child, my nephew Kris. My father and my brother's mother brought him home from the hospital nearly three months after his birth, and he still looked like a little drowned rat in the pictures from then.

My aunt lost two sets of twins; one set just into her second trimester and the second set just after they were born at 28 weeks (this was over 30 years ago).

I was born six weeks early and was four pounds. I only had to stay in hospital for about two weeks. 30 years later, I almost lost my daughter in the fifth and 24th weeks of pregnancy (different reasons both times). Thankfully, I was able to carry her to term after that 24th week near-disaster. I look at her every day and just thank our lucky stars.

I can't believe how often pre-term labor and birth defects have touched our family; I could keep going on with other stories of cousins and aunts and friends. I give every year to the March of Dimes; it's a wonderful organization.

Charlie is gorgeous, by the way. But, you knew that already.

Posted by: candace at Nov 14, 2006 5:17:11 PM

I have been reading this website for sometime now after being diagnosed with unknown infertility. I just wanted to add a quick story. My aunt suffered a ceisure at 24 weeks with her 3rd child. Her oldest had to call 911 to get help. The ambulance came and took her to the hospital. The doctors said to my uncle, "its either her or the baby... make a decision quick". Of course, he chose for them to save my aunt. They took the baby by c-section. My aunt turned out great, healthy as can be. And, unbelievably, I now have a cousin who is 6 1/2 years old named Tyler who also made it. At 24 weeks he survived. It was not an easy road, and they call him "the million dollar baby" for a reason. I think that families who go through something like this really understand the fragilty of life and how miraculous it is to have a healthy child.

I will keep those women in my thoughts and prayers today who have lost a child/children in preterm deliveries. You are very brave women and I hope the best for you.

Posted by: Arisa at Nov 14, 2006 5:24:38 PM

I celebrated getting to 24 weeks - legal viability where I live. And then 28 weeks - 95% chance of survival! Things will be fine! And then 32 weeks - well, the baby could come now with no problems whatsoever!

I went into labour bang on 32 weeks, and had my son at 32+3, with steroids. All through the labour, birth, and SCN stay, I was calm, confident, relaxed. Things will be fine!

I look now at my precious, precious boy, and shudder at how blase I was about his life. He is 11 months old now and I am beginning to worry about his development.

If I have another one, I will not be able to breathe until I make it to 38 weeks. If I make it.

Posted by: Kez at Nov 14, 2006 5:29:15 PM

Apparently my doctors must have trained the same place yours did, because I've heard the "no crystal ball" phrase so many times in the last year.

Posted by: Jennifer at Nov 14, 2006 6:45:20 PM

Today is prematurity awareness day. I assume that is the reason for this post. I want to write one for today, too. I had my girls at 31 weeks. Just 31, and not 30w6d because they were born shortly after midnight. Every few days does matter. And certain milestones are key. Babies born at 32 weeks or more sailed through the NICU. Just one extra week, but their stays were much shorter.

I remember laying in the operating room, waiting for my c-section, and someone in the room said "she's 30 weeks." My OB (the only one in there who actually knew me) and I practically shouted, at the same exact moment "31!" That extra week mattered, and had come at great cost, an awful week in the hospital, over Christmas Eve and part of Christmas day to get the shots for their lungs. My OB, who knew I had a young one at home, sent me home Christmas day to be with him. I ended up back in the hospital the next day. I probably should not have gone home. I feel guilty about it. I spent the next 5 days in the hospital on magnesium off and on, and miserable, but I know those extra days were worth it.

Once we hit 31 weeks, they decided to deliver. I had an abrupted placenta, and had started bleeding and contracting again, and they decided better out than in. I'm sure that if I had been a few weeks earlier, they would have decided better in than out.

One girl spent 5 weeks in the NICU, the other spent 6, same as Charlie. Our NICU stay was pretty uneventful. I never was worried about losing them, just worried about what the future might hold. They are almost 3. So far, it does not appear there are any lasting effects, although one daughter had strabismus (crossed-eyes) for which she recently had surgery. The strabismum was probably caused by her prematurity. She wears glasses. Luckily, she looks really cute in glasses. And I will always wonder, would they have run faster, been smarter, been different, had they not been born so early?

I gave to the March of Dimes today, in honor of prematurity awareness day. November is prematurity awareness month. The March of Dimes does such amazing work, give if you can.

Posted by: legalmama at Nov 14, 2006 6:54:58 PM

I got the viability talk at 19 weeks, after a bleeding episode led to a diagnosis of placenta previa. I remember thinking that 24 weeks was so far away and still only at the very edge of hope. I celebrated the end of every day and especially on Thursdays, because that would mark the end of another week. I was incredibly fortunate to make it full term after all, but I will never forget that fear and I think constantly about the families who are touched by prematurity.

Posted by: Karen at Nov 14, 2006 7:52:24 PM

Julie,
I've been following your blog since Charlie was born. I had just given birth to daughter #1 and was amazed at your courage. I too had gone through eons of ART to finally get pg with my daughter. I remember thinking how strong you must be to have your child in the NICU for 6 weeks and seemingly hold it together.

It was your story - and months later, your advice to Pazel about having a baby in the NICU - which has gotten me through the last 6 weeks...daughter #2 arrived 10 weeks early on October 8, 2006. Same story - gravely ill with pre-eclampsia - baby must come out. So many people have said to me how strong I am to hold it together and it's then that I realized I am not necessarily stronger than any other woman out there - we just do what we do because we HAVE to - because we are mom.

We have another 2 weeks to go in the NICU and a long road ahead, but we have miracle child #2 and couldn't be happier!

Thank you for sharing your story and thank you to all the families who have paved the road ahead of us.

Posted by: Julie at Nov 14, 2006 8:42:18 PM

Having just attended our first NICU reunion, your post is quite timely. Thank you.

Posted by: lagiulia at Nov 14, 2006 9:01:32 PM

we are the new parents of the most gorgeous baby girl in the world, a 24 weeker who, thanks to a steroid shot, was born breathing on her own and at 1 lb 8oz continued to shock the doctors the rest of the way through her stay in the NICU, performing such stunts as extubating herself. She comes to us through adoption, a whirlwind adoption which happened faster than seemed possible.

A great number of prospective adoptive parents turned her down just by the mere fact of her being a micro-preemie--even though three months into things she'd had no major surgeries, seizures, apnea etc throughout her whole stay, and ate on her own very quickly, and was gaining weight and breathing beautifully.

But they wanted guarantees. And there are none. I thought the crystal ball statement was in wretched taste--- I remember recoiling when I first read it in your archives-- but as for the underlying concept... We don't "know" what will happen. We just know she's doing great, now, and deserves to be loved as much as any child born into this crazy world.

And as for her not being resucitated(although she never stopped breathing on her own she was of course immediately intubated), on another front the immigration reform signed back in July essentially says she shouldn't have been, because even though she was born in the U.S. and is thus a citizen, her birthmother was undocumented, and the new law says children of undocumented persons, though born in the U.S., will not be eligible for Medicaid.

Posted by: sadie at Nov 14, 2006 9:45:14 PM

Michele, I'm so sorry about your loss. I never once let myself think that I could loose my baby girl, nor did anyone tell me it was a possibility.

I made it to 28 weeks and 5 days. I thought "just make it to 30 weeks!!!" so many times for the first 28 weeks, and then I remember shaking the bottle of prenatal vitamins, and realizing that if I made it to the end of the bottle, that would be 30 weeks. No problem, I thought! But I didn't make it.

Today, though, all is well- we have a beautiful baby girl who talks a blue streak, and has a slight gross motor delay. Like you, Julie, we feel quite satisfied with our outcome. It could have been so much worse!

Posted by: BeBe at Nov 14, 2006 11:26:15 PM

i am lying here with my two month old my chest. He is technically only 36 weeks gestationally. yup. born at 27 weeks he had what they call an "uncomplicated' NICU stay. except for the 4 times we almost lost him.

and yet i know how lucky/blessed we are. you can't help but feel lucky if you spend any time in a nicu,

so yes please give, and hold your children just a little bit tighter tonight.

Posted by: sarah at Nov 15, 2006 2:58:31 AM

Last month while I was at the dentists for a check-up, my hygienist mentioned in conversation (can you be said to be having a 'conversation' when one of you is talking and the other is only able to go "Ugh", and gurgle?) that she was approaching her 40th birthday. Then she casually added that she had been born at just 23+ weeks!!!!!! I nearly choked! She apparently weighed just over 1lb and a half. Technically, she could have been counted as an abortion.

She is fit and well and has a nine year old son. The only effect on her as far as I could see was that she wears glass - but then so do a good many of us! I didn't get a chance to ask her the details of her survival, (she was doing a very thorough job on my teeth, for which I thank her most sincerely) but she did mention that she always says thank goodness for oxygen.

But WOW!!!!!

And I just can't imagine how someone like her (or her parents!) feels about the Church of England statement.

Posted by: Brooke's M-I-L at Nov 15, 2006 4:28:07 AM

perception is everything...after those weeks and months of nicu babies, and the nicu tango, we actually got to take our babies home. we were the lucky ones, although it sure didn't feel like it at times.

and then there is tertia, michelle, my friends sonia, jane, and sarah, who have lost their born too soon children. and i realise that we, who have the nicu survivors, despite (in my kids cases) the cp and other developmental issues, are so very blessed.

oh, we never heard about a "Crystal ball"....we had language barriers, but never anything like that. must have been very helpful, salt on the sutures sort of thing.

Posted by: tess at Nov 15, 2006 5:10:56 AM

BTDT...twice. My daughter (now 13) was born around 31 ish weeks (can't remember exactly...I was quite sick at the time) and stayed in the NICU for 3 1/2 weeks. She was 3 lbs 9 oz. Actually what was wierd about that time was that after I was up and walking around, the OB/GYN who did my emergency c was coming down the hall with a bunch of students, and stopped and introduced me as the HELLP mom that they didn't think was gonna make it. Yikes. Very scary for a 21 year old new mom.

My son (now 2 1/2) was born at 30 weeks + 6 days at 3 lbs 8 oz, and stayed in the NICU for 32 days. The big scary part with him was when he was a couple of weeks old, he got some kind of stomach infection, and they had to completely stop his tube feeds, and give him IV antibiotics, and start over from scratch with giving him tube feeds. I cried so hard when they told me I couldn't hold him that day.

Even though nowadays I want to pinch their heads off half the time, I feel so lucky that we are all here and alive, and thank goodness that I don't know what it's like to lose a child. My heart breaks for those who do, and goes out to those who are at risk or having complications.

Posted by: KLynn at Nov 15, 2006 8:35:23 AM

When I started contracting at 22 and a half weeks I walked in to the hospital feeling inconvenienced by the intermittent pain. As they began to admit me and set me up to monitors and ask tons of questions, my sense of humor did not abate. And when I was airlifted to a different hospital, better equipped to handle my "situation", not a sliver of concern crept into my head. After all, it was to early to be in labor, what is everyone so worried about?? Even after the Perinatologist, and the NICU doctor warned me what possibly lay ahead and there would be nothing that could be done if I didn't make it to at LEAST 25 weeks. I figured they were justs covering thier asses, I mean seriously, what was the fuss???
And less than 24 hours later, when my precious David was born, all 1lb 3oz of him, I still didn't get it. And and hour later when he was pronounced I held him close, regretting so much my failure to accept sooner and maybe try to have done SOMETHING, ANYTHING.

After nearly 10 years of intertility and 2 RE's, it finally happened, and just like that, he was gone.

Thank you Julie.

Posted by: Nicole at Nov 15, 2006 9:36:42 AM

Our twins were born at 28w4d gestation, with 24 hours of steroids, after I had been on total bedrest for three months. Although 32 weeks was our magic number, we thought we had got them far enough. We didn't. We lost our daughter 9 days later. We thank God every day for our son, who is 6 months adjusted and spent 7-1/2 weeks in the NICU. He gives us so much joy. And we will spend the rest of our lives wondering what our lives would have been like had our daughter survived. Thank you for reminding us all of Prematurity Awareness Day.

Posted by: Casuarina at Nov 15, 2006 9:40:44 AM

I sit here sobbing at the stories of the women who have lost their children. My son was born at 30 weeks, 3 days after (thank God) the round of steroid shots. I, like so many other readers and posters, had HELLP Syndrome. And while we had our problems, my son is a beautiful bouncy 7 year old now. We were lucky, and trust me I know it, but I probably don't thank God enough for the joy and happiness I've been given.

I'm 21 weeks along with my second now and my blood pressure is starting to do strange things. We're keeping it under control and it's gone back to normal from the highs of last week, but nobody knows if this is just PIH or if this will develop into HELLP. I, just like so many others, pray that I make it to 30 weeks. 32 would mean my baby could be born at the hospital in my city. Any earlier, and it's an hour away. Those are my goals.

I think it's strange that women who have had problems in the past, whether with infertility or prematurity or both have different goals than others. We don't strive for 37 or 40 weeks. While we know that it would be wonderful to make it that far, we all have other goals that we'll be happy to reach. Maybe for most of us 24, or 28 or 32 or 32 or whatever our goals are seem more real. More attainable. If I get past 30, I can't imagine the relief I'll feel.

Thank you everyone for sharing your stories. The heartbreak as well as the joy. I know that tonight I will hug my son a little tighter, and probably a little longer than he'll want me to.

Posted by: Julie - a different Julie at Nov 15, 2006 9:58:42 AM

When my water broke at 29+1, one of the first people I thought of was Julie. Because I knew Charlie had been born somewhere around that time, and I knew he made it through the NICU and was doing so well. It gave me comfort as I heard the door lock behind me as they wheeled me into the Antepartum Unit.

A lot of people who have religious talk about how they were blessed, or how God was watching over them, or how their prayers were answered. And even though I'm on the fence about religion, those sentiments never sit well with me. Because I know of so many good people who prayed, and deserved to be blessed, and who came home to empty cribs and broken hearts.

So, when I'm thankful - which is every day of my life - I'm thankful to the scientists who figured out exactly the right dose of beta-methasone to give. I'm thankful for the NICU personnel who made our stay so uneventful. And I'm thankful for the March of Dimes, and their continuing research.

Posted by: runnerwoman at Nov 15, 2006 10:01:02 AM

Reading your beautifully eloquent post makes me feel like a total asshole for complaining about my babies being late. (Smacking myself right now...)

I'm the March of Dimes liason for my neighborhood street, meaning I harass my neighbors until they give me a donation which I pass on. Here's hoping one day science can ensure all women make it to 30 weeks and beyond.

(Runnerwoman, I understand completely what you mean about the 'blessing' thing, and hence my uncomfortability with it as well. It feels strange to think that God would bless some but not others.)

Posted by: Kelly at Nov 15, 2006 10:15:26 AM

I don't really need another reason to be thankful that my kids were born healthy at full-term, but here it is, kindly delivered up by Julie.

The couple I'm helping had TWO preemie babies due to the mom's kidney disease. The first baby girl was born at 32 weeks and made it out of the NICU. Her sister, born two years later (circa 1985) was born at 25 weeks and never left the hospital.

I am so excited to think that I may be able to give them something they never had before: baby/ies that leave the hospital pink, healthy, and on-time (not early).

I can't know the pain of sitting over an incubator, but I'm sure it's all-consuming and life-changing. Good luck and prayers to everyone chanting "gotta get to 30 weeks."

Posted by: JennyK at Nov 15, 2006 10:17:43 AM

I am so, so sorry for what so many of you have had to go through. We felt so lucky with Miss Pink--got pregnant the first month using Follistim, carried her for 39wk when she was born via c/s, all 11lb 5oz of her (yes, I had gestational diabetes). Now we've managed to get pregnant again without drugs (how did that happen?!) and today I'm 9wk and terrified. Reading these stories (and those on the MoD site), how can I make it through the next 20+wk without losing my mind? I'm taking care of myself, but I feel like I have to be an ostrich and hide my head in the sand, "La la la, I can't hear you..." Sometimes knowledge is terrifying.

Posted by: pink at Nov 15, 2006 10:30:47 AM

Thank you for this lovely post...prematurity is definitely one of the biggest problems facing babies today. :) Child Magazine has a great article focusing on preemie survivors, and while I personally have no preemie story to tell (other than the many I've been fortunate enough to work with) I completely support everything March of Dimes does in trying to get preemies the support and recognition they need. Charlie is precious...you're definitely lucky to have him!

Posted by: Audrey at Nov 15, 2006 11:01:14 AM

This is one of your most beautiful posts. Thank you for reminding me how lucky I am too.

Posted by: Mona at Nov 15, 2006 2:16:07 PM

My son was due one week from today. I suspected (based on nothing) I would go early.

Not 31w6d early. PH that became pre-eclampsia very quickly. Betameth, mag, emergency c-section. So much for natural birth.

4 weeks to the day in NICU. My son never had breathing issues, just couldn't eat b/c he was small. We tore our hearts out being there, but also knew we were so lucky because most of the babies there were not healthy.

What helped was having been a rabid Julie reader (a friend turned me onto this, simply because she's damn funny.) I kind of knew what to expect.

So here I am, exactly 7 weeks 1 day later with my gassy boy on my chest as I type one-handed. I may not have problems getting pregnant -- who knows, he was my first attempt -- but I'm really, really scared that if we try for another, I will not be as lucky the second time around. I suspect I am deeply traumatized by this experience in ways I haven't yet processed. I do know that I repeatedly said over the incubator, "I never want to have to do this again." And that was with a *good* outcome.

Posted by: Heather at Nov 15, 2006 2:18:43 PM

I've read these comments with very mixed feelings - what a lottery it is! Like everyone else, my heart goes out to those who had such a cruel loss but can I give a historical context (if that's the right term.) My 3lb 9 oz premmie is now 29. In my day, it was "just get to 36 weeks" - so what a lot of progress has been made in the ability to keep tiny babies alive! I was admitted at 29 weeks with pre-eclampsia and not much alternative then but to try to walk the tight-rope between too soon and too late. We "lost" the gamble, in the sense that she is severely disabled, born at 34 weeks. At least there is more hope now of a better outcome. Though not as much progress seems to have been made with pre-eclampsia and HELLP syndrome.

Posted by: Claire at Nov 15, 2006 4:51:14 PM

When I went into labor at 29 weeks, I had the same wish ... make it one more week, two more weeks, something, just longer. I made it 10 more days, and I have no doubt they made a big difference in the health of my twins. Thanks for the link ... I don't know much about MOD, but I'm going to learn more. It's too important.

Posted by: laura at Nov 15, 2006 6:13:04 PM

How interesting that you made this post today. I'm wondering how you feel about the British med. guidelines that suggest not taking "extreme" measures to save a preemie born before 22 weeks? My feelings are if we have the technology available, shouldn't we go for it? But the only preemie I've ever had was my foster son (born at 32 weeks) So I never experienced the "what ifs" of parents who deal with the horror of it all..I never even knew that our baby was out there until they called to say he was being released and did we want him? To us, his being premature had little effect. In our eyes, it was trying to prevent difficulties later on from the crack cocaine and heroin exposure that led to his premature birth that made for our challenges. How do you feel?

Posted by: Tracy at Nov 15, 2006 10:20:04 PM

I was a ticking time bomb - bedrest at 14 weeks, in the hospital at 23 weeks, every week had its scares. I prayed every day that I would stay pregnant for one more day. The nurses gave me a big balloon at 30 weeks and we celebrated with ice cream cake. A nurse made a bet with me for $100 that I would make it to 32 weeks. I lost the bet - but we got to 31 weeks 2 days. I read your blog daily (sometimes repeated reads and views) throughout my 9 week hospital stay. It was an inspiration.

Now I have a beautiful boy. And people forget what we went through and what he went through (although he did do amazing). I will never forget - nor of all the stories I've read of women and their babies.

Posted by: andrea at Nov 15, 2006 11:27:22 PM

Thank you for the beautiful post, Julie. That was a sad and lovely gift, like so many you've given.

Posted by: Maria at Nov 16, 2006 7:50:35 AM

Having met Charlie at BlogHer, and a couple for friends who spent ages on bed rest and now are raising wonderful children, I share your joy in a special way. He's a wonderful little boy. It is so generous of you to share this story here. An extra reason to celebrate Thanksgiving for all of us!

Posted by: Cynthia Samuels at Nov 16, 2006 7:55:52 AM

This was gorgeous--and it's so true. Reading the books and knowing the possibility didn't prepare me at all for the experience. I wandered through my NICU time feeling like even though I was getting to know my way around the hospital and the protocols and the nurses, it was an emotional journey every day. And it still hits me from time to time. And it's still hard to look at those early photos (even though my kids seem to think pictures of themselves with all the tubes and gear are "silly"--sorry, sweetie, can't quite see it in the same way as a two-year-old).

Thank you for writing this--and for bringing more awareness about prematurity to the Blogosphere.

Posted by: Mel at Nov 16, 2006 11:35:24 AM

It has taken me two days to comment on this even though I posted about Prematurity Awareness Day on my own blog. I supposed there are good days and bad days when dealing with something so close to the heart.

Azure will be 9 months actual tomorrow. So far she has hit her milestones for her adjusted age (5-1/2 months)and we are keeping our fingers crossed that she continues to do so. I feel lucky every single day. However, looking back at what *could* have gone wrong just terrifies me. T and I have trouble looking at pictures from those first couple months in the NICU. They seem like a completely different person from the smiley drooling girl we know now. She continues to grow, though she is still wearing 0-3 month sizes and has absolutely no belly. (She LOVES to be wrapped up in a certain hand-made quilt.)

The thought that in certain parts of the world she would have been left to die because of her gestational age is just chilling. She required oxygen and heart surgery and feeding tubes and antibiotics to get her through. It was expensive, but T and I have not had to pay one red cent for her NICU stay (so far). We would have gladly re-mortgaged our home, sold our cars and taken on second and third jobs to do so. We are still paying on the credit cards we used to "purchase" the conception!

I was shocked at all the people who came out of the woodwork with stories of premature births in their families. I guess I shouldn't have been so surprised since the March of Dimes states that one in eight babies will be born prematurely. My heart goes out to them all.

Thank you so much for sharing Charlie's story. You and Miss W were my guides through my NICU experience. If I had not read your collective accounts I would not have been able to face it so calmly and make decisions that needed to be made. I will always be grateful for that.

Posted by: Blue at Nov 16, 2006 1:05:57 PM

My heart aches for all the ladies who've lost a tiny babe. It also aches for all those with intimate familiarity of the NICU. I already knew this was Preemie Awareness month but every time I'm reminded of it, I get unglued, even though we were one of the lucky ones.
Charlie is gorgeous.

Posted by: Frances at Nov 16, 2006 1:37:30 PM

such beauty from the dung of suffering.

Posted by: dutch from sweet juniper at Nov 16, 2006 5:42:12 PM

I've been reading this blog for almost a year, but i've never commented - just silently lurked. One year ago I was pregnant with what would have been my first child. I was 22, scared out of my mind (it was unplanned, but I'm in a long term relationship). I miscarried the pregnancy at five weeks. I will never forget that pain. We both will never forget the horrific night spent at the ER, me being poked and prodded with needles and wands, and the absolutely emotionless and apathetic sonogram technician who offered not one bit of kindness or sympathy as i lay there being searched for some bit of lingering life --- even as I knew I was bleeding it all away. (The hospital received a scathing letter on my part concerning this woman, as well as the fact that when I asked for tampons or pads, they had *nothing* available, forcing me to sit on toilet paper for hours.) And the look of pure, white pain on my boyfriend's face when the doctor said, "nothing...empty...no yolk sac...". I found this blog not too long afterward; I desperately needed to hear other people's stories. Thank you, Julie, for this blog. I read it constantly. I'm rooting for you, even though I have no idea why I miscarried (they don't test for first-timers, obviously), and I haven't been through half of what you've gone through. I just appreciate your humor, your sarcasm, your irony, your humanity. I appreciate this blog and the awareness I know have because of it.

I finally decided to write a comment, I guess because I'm thinking of being born premature (I don't know how many weeks I was born at - two months early? - just that I weighed 3 lb, 3 oz, and in 1983 I was given a 50/50 chance of survival.) But i lived. I didn't form sentences until the age of three..I just babbled...and then one day, my mother says, I started to talk in complete sentences, as if I'd known how to all along. That's all I think has been affected. Well, I am slightly crazy...ha. Still, I know I'm lucky to be alive.

So reading this and knowing that one year ago, the little embryo wasn't so lucky, made me very sad. I just thought I'd share, for what it's worth.

I'm thinking of all of those who post on here, and their situations. I know now that if I have to deal with these situations when I'm ready to try again, there is much support out there waiting. Thank you.

Posted by: heather at Nov 17, 2006 3:32:35 PM

sorry...I should proof read! Anyway, I forgot to mention that I actually do have a bicornuate uterus. This was found at age 18 during a gynecological exam for unexplained pelvic pain (later found to be a low grade case of a pelvic infection). I forgot to ask, does anyone else on here have this condition? If so, what did they do about it? I've read that surgery can help, to remove the septum (mine is only partially divided).

Anyway, I'm thinking of Julie, and everyone on here, as I mourn the one-year anniversary. My thoughts are with you all.

Posted by: heather at Nov 17, 2006 3:38:22 PM

Thank you so much for this post. I am writing to you from my hospital bed, I am 29 weeks 6 days pregnant. Last year I gave birth with no warning to my daugher at 27 weeks , 4 days. YES every day does count in ways that a parent to a " regular " baby can not imagine. Looking at my 2 pound daughter, falling in love, while trying to not get too close just in case she was not one of the lucky ones was awful. After 103 days in a NICU I am so proud of my little girl who is about to turn one on Monday. She is doing great, she just needs some fine tuning but we are some of the lucky parents. Because my husband and I are idiots and falling into the belief that I could not get pregnant while breastfeeding, much to my surprise I found out that I was pregnant again and this time I have a full and complete placenta previa, which now like a very large bloated princess I sit in a hospital bed counting each day that I can keep my New Baby in. Living through what we did makes the time easier to deal with, it is no picnic being in bed for the next eight weeks, I am lucky, I get to get up to pee and shower but it is so much easier for me to sit my fat butt in a bed rather than watch another one of my children fight for breath.

Posted by: Jillian at Nov 17, 2006 3:53:46 PM

phew - what a story! and haw brave you must all have been. thank goodness you all have each other!

Posted by: mad muthas at Nov 17, 2006 5:05:49 PM

Heather,

My sister has a bicornate uterus as well, and your story is very similar to her experience. She was in her twenties and had a miscarriage, and the hospital was terrible to her. They seemed to be under the impression that she was suffering a botched abortion of some kind, although they are perfectly legal, and left her sitting on a gurney in the hallway. She has been told that it is very difficult to carry a child to term without having surgery to correct the problem.

Posted by: Chickenpig at Nov 18, 2006 8:08:32 PM

We're another one of the lucky families. Thank you for your post. I also wrote about prematurity awareness on my blog. Being the mother of 24 week twins, the March of Dimes is very near and dear to my heart. Our time in the NICU is something that no matter how many years away from it I get, still stays with me. I'm glad you wrote about this and are bringing a little awareness to this real problem.

Posted by: Kim at Nov 19, 2006 5:53:55 PM

Heather,

Before you try again to conceive, please go to a RE and have them do an MRI (at least) or a laporoscopy and hysteroscopy to determine if you have a bicornuate uterus or a septate uterus. I have a septate uterus, which was surgically fixed. I have had no trouble now having my two kids.

My mom had a septate uterus too. She had 7 early miscarriages, followed by a healthy miracle boy, followed by a loss of a 27 weeker (1976) until they finally figured it out. They removed the septum, she conceived me the first month she was allowed, and took me to full term, no problem.

You need to have an accurate diagnosis. My OB told me I was BU, not SU. HA! Had I listened, I would have probably lost one or more babies. My septum was huge. Go to an RE. Get the MRI or lap/hyst done. IF you have a septate uterus, have the resection done (nowadays-unlike in my mom's day-they don't cut you. They just use small cameras and cutting tools via your cervix to get rid of the septum. You are totally low-risk after this surgery, too--no c-section required).

Please, do this. If you want to join a community of women with uterus abnormalities, you can email me. I'll send you the link to a yahoo group of us.

Good luck!!!

Posted by: colicmommy at Nov 19, 2006 8:13:13 PM

My first daughter was born at 36 weeks to the day due to severe pe and partial hellp syndrome. She was early but not nearly as early as the others on here. My second daughter was born at 35 weeks 5 days due to decels and severe PIH. I got that far by the skin of my teeth. I almost had her at 32 weeks but fortunately my liver enzymes stabalized. I remember a nurse at my 33 week appt, saying what's the big deal about 3 days. We had been arguing over my due date and I was positive of my due date and conception date. As was my dr. However, the midwife in the office changed it due to an early US to three days later. My hospital was a small rural hospital with no nicu. They would not let you deliver before 35 weeks. You would have to go to Children's. So what's the big deal of 3 days. I told her whether or not my baby is in the nicu. Whether or not I get transferred. Whether or not she is 3 days bigger. THAT'S WHAT THE BIG DEAL IS ABOUT 3 DAYS! (I never had her again while pregnant). When my second daughter was born, her ped told me the following: Every day you kept her inside is worth 2 in the NICU. That fact that you had excellent prenatal care made her big. That extra pound she had over her sister made all the difference in the world.

Posted by: missgamecock at Nov 20, 2006 9:16:14 AM

It's hard trying to type with tears streaming. I too am thankful for the people on this board who share so much hope.

At 22 weeks, my cervix silently opened and I nearly lost my twins. Thank God I felt funny that day and had recently had the terrifying lecture about preterm labor, so I went to L&D. An emergency cerclage, a week in the hospital and the assignment of strict bedrest for the duration was the result of that trip.

I started counting milestones. If I could get them to viability, then to 26, 28 and the prized 30 weeks. At 30 weeks exactly I started having contractions and ended up back in the hospital. I was scared, but reassured because of Charlie and his happy outcome.

I got the steroids and thankfully, they were able to stop the contractions and send me home on nifedidrine.

I'm 31 weeks, 2 days, grateful for every single day -- reaching for 32 weeks, and praying for the brass ring at 37 weeks.

I feel like I have nothing in common with women who have unassisted, uneventful pregnancies. I've given very little thought to the nursery or breastfeeding or life once they're born. My focus is on making it another day, making sure they're kicking, and doing everything I can think of to keep them in there one more day.

Posted by: Terry at Nov 21, 2006 3:07:56 PM

I'm currently a NICU parent, with twins born at 31 weeks, now at 35 weeks. Yesterday marks one month in the NICU, and it has been a fucking hard month, to say the least.

Thank you for your blog, for having the energy and the eloquence to write about all your experiences. Reading your entries and knowing how much Charlie is thriving now helps me to believe that there is a light at the end of the tunnel.

Posted by: Ornery at Nov 27, 2006 8:44:24 PM

I wrote a comment a few weeks back, while on hospital bedrest, trying to keep baby number two safe and sound in my womb. Much to my shock and surprise, Skylar Eden Ehrlich came into our life at 30 weeks, no extra days, not even an extra hour. I am a mom of a 27 4/7 weeker and 363 days later I gave birth to number 2 - she was my " I am not going to get pregnant , I am breastfeeding " baby. Silly me to listen to that. The reason I am posting again though is that I have seen first hand the different 17 days can make, Skylar is doing so much better than my first, her lungs are stronger and her issues seemed to be less. Good luck to everyone who is trying to keep a baby safe in their womb, every hour counts and for those of you who become NICU mommies, stay strong, stay informed and never be afraid to cry !

Posted by: Jillian at Dec 2, 2006 12:30:14 AM

I had a stillbirth last June at 20 weeks and am now at 33 weeks and 1 day. Its so true to say I can't relate to other mums on the ANC list because I don't care how many baby grows I buy or what cot we choose I just want this one safe and sound and alive. My last baby died due to SLE and all the drugs and pills I have for this pregnancy have helped it stay in place for now!
The pain of all mum's of pre term babies who don't survive is immeasurable. As for not treating when did we get the right to play God and choose over life and death. If we have no legalised euthanasia then what gives us the right to choose life or death for another human soul?

Posted by: Eveline Bright at Jun 29, 2008 12:06:13 PM

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