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12/15/2004
Time does funny things. Funny-depressing, not funny-ha-ha.
During the first few day of Charlie's life, I learned he would soon have twin roommates. Their mother was hospitalized on bed rest for preterm labor, and was expected to deliver within a matter of weeks, if not days. Her due date was mere days away from mine. I was more excited to hear this than I should have been — twins! of the same gestational age! expected any day now! every bit as premature! — and thought that if they arrived soon, I could covertly observe them, creeping up to their isolettes to make visual confirmation of their inferiority to Charlie.
On Monday the twins arrived at last. (IVF twins, we learned, since one of the nurses asked, in what should have been her outside voice. The mother answered in what should have been her Washington-rallying-the-miserable-frostbitten-troops-at-Valley-Forge voice, so we couldn't help but hear.)
Paul and I were there to visit Charlie during what we've come to refer to as baby-bugging time. Because premature babies need uninterrupted sleep, their care is clustered — here they're disturbed only every three hours, when the nurses change diapers, take vital signs, and deliver a payload of breast milk as needed. Baby-bugging time, when Charlie's already being antagonized, is when we're able to hold him.
We didn't hold Charlie that day. The arrival of the twins involved every nurse in the NICU, two doctors, and two physician's assistants. They weren't frantic, but they were purposeful and focused, working in impressive concert to examine and settle the newest babies quickly. I love holding our baby, watching him blink at me, seeing his mouth move in sucking motions as he sleeps on Paul's lap, but that day it seemed slightly less urgent than, you know, making sure two smaller newborns were actually getting enough oxygen.
And I thought again, I'm so glad we didn't have twins. Having one baby prematurely has been agonizing enough. How much more grueling to worry about two?
The next evening the mother of the twins was in the NICU, along with her husband and her parents. The longer I stood watching Charlie, overhearing their conversation, the more envious I felt — not that they had two babies, but that they apparently didn't feel worried, or that their joy was so strong that doubt couldn't intrude. That the mother was immediately able to visit them and hold them. That she instantly found them adorable. But mostly that she got two more weeks than I did.
I've mentioned before how critical two weeks can be in the development of a baby. In babies on the edge of viability, two extra weeks mean the difference between a chance at life and a certain death shortly after birth. At Charlie's age, the survival rates don't increase appreciably with increasing gestation because they're already so high. But even so, a couple of additional weeks in the womb can mean a much shorter stay in the NICU. In Charlie's case, two extra weeks would have left his lungs in much better shape — and would have found us safely at home for his delivery.
There's no point dwelling on what might have been, because, after all, it wasn't. But it's impossible not to wish. Two weeks. That's not long. But for a baby, it's practically forever. It could have made such a difference.
Some people say that the hardest part of having a premature baby is leaving the hospital once they've been released while their babies stay behind. For me, that wasn't hard. First, the overall feeling of unreality that surrounded the entire experience was still intact — I could hardly believe I'd even been pregnant to begin with, much less that I'd gotten so sick, had a baby, and was miraculously well within the space of a few short days. Second, Charlie so obviously needed medical care that I couldn't regret leaving him in hands more capable than mine. Finally, I thought there'd surely be so much more that was harder.
A couple of days ago my suspicion was confirmed. There was something harder for me.
Since Charlie arrived at the NICU, several babies have come and gone. Most are in the NICU for no more than a couple of days. They might be ill, but not seriously. The ones I've seen aren't early or small. They're 7 or 8 pounds, and they get sent home fast. If they're in an open bed, if the handmade sign taped to the side of their cot says they weigh twice what Charlie does, I hardly register their presence — they make almost no impression as I trip all over myself in my hurry to get to Charlie's nook. They're not there long enough to inspire my curiosity.
But other babies make a deeper impression. They're the ones who've been there longer — say, a week, ten days — but who arrived after Charlie did. I've seen their parents there with them, learning to bathe and feed them. I've nodded pleasantly to the parents as I make my beeline for the isolette at the quiet end of the room. And I've seen those babies strapped securely into their infant carriers. The nurses hug the tearful parents, wish them luck, and make them promise to return with photos and updates. And then the babies go home.
That'll be Charlie one day, I know, and that'll be me leaking grateful snot onto the scrubs of a hapless nurse. It won't even be that long from now in absolute terms. Weeks, only weeks. But when the days blur together as they currently do, with the hours punctuated by trips to the hospital, bouts with the breast pump, and phone calls from anxious friends wondering whether no news is good news, it feels like fucking forever.
Posted by Julie at 11:06 PM in Mama drama, Welcome to the bad place. Population: You | Permalink
Comments (66)
Wishing you a speedy end to Charlie's NICU stay.
Posted by: coralie at Dec 15, 2004 11:18:32 PM
counting the weeks - days - *hours* - till Charlie can go home with you. He'll be strong; you'll be strong - our prayers are with you, always.
Posted by: Becka at Dec 15, 2004 11:22:35 PM
I can't imagine how difficult this must be for you and Paul, having a baby in the NICU *and* being so far from the comforts of home. I cannot wait until the day all three of you are snuggling up together - at home! Thinking of you all the time, my friend. Give Charlie a kiss for me!
Posted by: Danae at Dec 15, 2004 11:27:03 PM
Am thinking of you as you make it through these next few weeks until Charlie can come home.
Posted by: Miss W at Dec 15, 2004 11:33:36 PM
I just wanted to congratulate you and send you and your family best wishes.
I know it can be a really hard road - a marathon, in fact (a history of infertility, PIH, HELLP, and a preemie little boy in NICU here, too), and I won't say anything Pollyanna-ish, but all the same I am still deliriously happy for you. Congratulations!
Posted by: Karen at Dec 15, 2004 11:37:04 PM
It's fucking forever and it is no time at all. Amazing how being a Mom will screw up time like that.
Best to Charlie.
Posted by: Brandee at Dec 15, 2004 11:41:45 PM
Oh Julie, this post brings back so many thoughts/memories/issues for me. I am approaching my 2 year anniversary of the start of my NICU experience and still have so very many scars. I never felt that assurance everything was going to be OK. Truth be told, I am still waiting on the other shoe to fall.
I am still coming to terms that my childbearing days are over. I have never once had that "normalcy" some people do, and I never will. You will probably always have some of those thoughts. I had to remind myself an awful lot that the end goal was to bring my kids home healthy. A week can equal a year in NICU time can't it?
Hopefully, he will be home soon and this will all be a memory you are recovering from instead of a daily experience.
Posted by: Amy V at Dec 15, 2004 11:41:56 PM
I know the way you feel. I wanted to feel happy for all the babies that came and went while my boys stayed over 18 weeks in the NICU, but I found it very difficult. It is a hard and long road, but you will get through it. I know that will not make you feel any better right now, but Charlie's day is coming soon. Best Wishes!
Brandy mother of Blane and Dylan (and their angel brother, Hunter born 1/29/04) born 22w 6d on 2/11/04 with over 18 weeks in the NICU
Posted by: Brandy at Dec 15, 2004 11:42:40 PM
Here's hoping the time passes faster than it does now and Charlie is home soon keeping you and Paul awake all hours of the night! ;)
Posted by: Janis at Dec 15, 2004 11:47:45 PM
I'm so sorry. I have no inkling of what it must feel like, but please know that I'm thinking of you.
Tell Charlie hi.
Posted by: tina at Dec 15, 2004 11:50:31 PM
You, Paul and of course, Charlie, are in my prayers daily.
I hope that Charlie is well enough to go home soon.
xxoo,
Posted by: Emily at Dec 15, 2004 11:53:13 PM
Oh, have a big hug from me! I sooo know what you're going through. With my daughter, there really weren't that many full-termers nearby, but it was hard to see even people who had been there much longer leave with their babies. The parents I'd nod to and have conversations with and share delivery stories with, and then one day they'd say, "Guess what! My baby is suddenly breastfeeding like a champ, and in two days, we're going home!" Sooo jealous.
Well, one day it was our turn. I remember the day, Jan 19th, 2001. (baby was due Feb 16th, for those counting at home)
The day does come. The day does come. The blur of pump, get blank stare when offering breast, watch nurse shove food down baby's nose, stare at sleeping baby - eventually it will end, and you'll have a real, live baby to be terrified to take care of at home.
I've talked to the parents at nicu reunions. They agree - we all get jealous of other people's discharged babies.
Posted by: geeky at Dec 16, 2004 12:05:20 AM
This all sucks so much I feel like I need to invent a whole new word for the suckitude. I'll put it on my to do list and I think it will play on the word 'vacuum' or maybe 'hoover.' I'll let you know.
Julie, I am not one for the online expression of sincere emotion but I have to tell you, your grace is flattening me. I swear by all that is holy this too shall pass and in the meantime you are inspiring legions. Inspiring them to do what, exactly, I don't know, but LEGIONS I tell you!
He's not sick, he's small. And he will grow. And I love you very much.
Posted by: Julia S at Dec 16, 2004 12:17:59 AM
When your in the NICU it does feel like forever. I really hated the mothers that brought their full-term spoiled babies' back from home to the hospital because of jaundice. Their babies were not on the 3 hour schedule and would cause a ruckus in the rest of the unit. And THOSE mothers would complain about how they were robbed of the first few days of motherhood. Give me a break, they would get to take their babies home in a couple of days.
I'm really sorry that it sucks, but it just does. Do you get to start to breast feed soon? That's also a hard road after tube feedings, but IS doable. Just bring on the Coronas to up your supply baby!
Posted by: Elizabeth at Dec 16, 2004 12:23:48 AM
Thank you for the update, the internet was concerned. We love you and admire your incredible fortitude.
Posted by: Lauren at Dec 16, 2004 12:34:33 AM
It must be driving you crazy to be stuck in a hotel room during all this. Like adding a waiting room to a waiting room. And in another state, no less.
Of course, as Nora Ephron once said, it's all material. Just think of the arc of this story, its twist and turns, drama and weirdness, despair and joy. When it's over, when you feel well, when you're snug at home with your darling Charlie, write your book. We'll all run over and pre-order it from Amazon, I promise.
Posted by: Kathy W. at Dec 16, 2004 12:39:03 AM
Oh Julie. I hope Charlie doesn't have a long stay in the NICU, but as you said, it looks like he is in the best possible hands (for what he needs right now). I hope you and Paul can take him home soon. Strength to all three of you.
Posted by: Menita at Dec 16, 2004 12:41:09 AM
Julie, I wish Charlie a speedy graduation from the NICU and to his warm and loving home. And I know it will happen soon. But for now, I can't even imagine how difficult this is for you.
You have so many wonderful experiences to look forward to with this little boy, but in the meantime, what a rip-off.
Posted by: Susy at Dec 16, 2004 12:48:38 AM
I suck at words. So just saying I love you and am thinking about you constantly.
Posted by: Liz at Dec 16, 2004 12:58:24 AM
I know what that's like. We spent a month the first time, then a couple of weeks here and there being in the hospital with Quinn. And as great as the care is in the NICU, there is nowhere for the parents to sleep, or rest, and the chairs aren't exactly made for sitting in all day (At least the ones in our NICU weren't). We passed the time by reading the entire Harry Potter series out loud to each other, both so he could hear our voice AND so we would have something to do. Anything to pass the time while he slept.
I remember the nurses had to kick us out at night to get us to go home, but when we did, we were greatful for the sleep and the opportunity to cry, so we could be fresh-faced and happy the next day when we went back.
I don't ever want to see the inside of a Children's hospital again as long as I live. As great as the entire staff was, I know they would understand my not ever wanting to see them again.
Posted by: chasmyn at Dec 16, 2004 1:41:20 AM
we too are nicu survivors. at one point, when our little guy was more plugged in than a christmas tree, i couldn't imagine how i would ever survive what was happening. i am surprised to write this but i want to tell you - despite a long medical road, some need for therapies (PT, speech), some scares with lung function - here we are with a typically developing, brilliant, adorable, almost 4 year old. i never would have believed what i'm telling you now, but someday you will find this whole experience just a small part of your and charlie's long and rich history. a SMALL part. it seemed overwhelming at the time, but now i see - it's just how we all started. the rest - the meat of the story - it's ahead of you. it's hard to see that now but as one who's been there i just want to say - it's true.
love to all of you.
Posted by: anon, again at Dec 16, 2004 1:44:45 AM
Another NICU survivor... we were there for two months, and had about one-and-a-half years of recurrent hospalizations. You will get through it, and one day, it will be a story you tell to your child and he will feel SO special. My daughter (by now a skinny, gorgeous 11-year old!) loves to see the pictures from the NICU and to hear how everybody was amazed at her strenght.
"At an age when others are not even born, you looked around and smiled!" "The nurses loved you because you looked at them so curiously!" "Your grandma was afraid she would cry when she saw you for the first time, but instead, she burst into exclamations of admiration for your beauty. So small and so perfect."
I went with her for a check about a year ago and showed her the NICU. She was deeply impressed and excited. You don't believe the day will come but believe me - it will. You will show Charlie the pictures and tell him what a hero he was and it's no wonder he is such a wonderful guy because he is SPECIAL. And you will be so proud, so proud, so proud, every single day.
Posted by: Lila at Dec 16, 2004 2:07:17 AM
Fucking forever is right.
Feel it all, dearest HW, and don't apologize for anything.
I didn't cry until I read Julia S.'s comment. You flatten me too, my love, my love. Okay. Get off my lap now.
xoxoxoxo
Posted by: mollie at Dec 16, 2004 2:14:36 AM
Thank you, Julie, for taking these wrenching situations and emotions and sharing them with the rest of us. You are so gifted at making strangers feel with you (and for you, of course).
Thinking of the three of you.
--Bugs
Posted by: Dead Bug at Dec 16, 2004 2:26:08 AM
De-lurking to say you're in my thoughts. A friend of mine just had her baby at 31w 5d and was 6 hours away from home for 6 weeks. I don't know what this is like first hand, but I do know she sounded exhausted and a bit overwhelmed whenever I would call.
Hugs to you and here's praying Charlie can be moved closer to home soon!
Jenn
Posted by: Jenn in AK at Dec 16, 2004 2:46:38 AM
"it feels like f*cking forever"
My prayers are with you and your family. My multiple trips with pre-term labor can sympathize, but I was lucky, VERY lucky. Singleton, 36w 1day, THANK GOD. We spent no time in NICU as the docs had predicted. Ten (10) plus years ago they warned us about the multitude of problems we might bear in the coming years. OH, HOW "THEY" can be so wrong.
Your Charlie will be fine. WE ARE ALL praying, and plus, he has such marvelous parents! (not to mention my toes, fingers, and boobs are crossed.) Take each day as it comes, a blessing, and know that we all pray for Charlie to come home soon. ONE DAY AT A TIME!
Posted by: A Mom at Dec 16, 2004 2:51:32 AM
In a fit of boredom I found your sites a while ago, and read the promises post. I bookmarked it and forgot it, as I often do with the only real treasures. Another day came that I needed to feel like there were humans on the other side of the screen and found that you had charlie. now i delurk after having been intrigued enough to read as far back as possible each day and each day I am glad to have had this chance. I know nothing of your pain, excepting my secondary infertility, but i feel for you, all three of you. Now i will wait to hear of the joy in bringing Charlie home, and hope that you all are well.
Posted by: Kerri at Dec 16, 2004 5:10:04 AM
I truly can't imagine how hard it is to see your precious baby in that isolette, and dream about the day you get to take him home. You are SO strong and I'm so impressed with how you've handled all of this. He WILL be home soon & this hell you are in will become a distant memory (it won't go away, but fade with the joy of having Charlie at home). Thinking of you!
Meredith
Posted by: meredith at Dec 16, 2004 7:33:35 AM
Continued prayers for your family...you have my word. He will be home soon. I just know it.
Posted by: Amber at Dec 16, 2004 8:05:01 AM
You've been through such an incredible amount. I'm just sitting here wishing for the time to pass quickly for you and hoping that the time when none of it matters (because you'll all be home safe and sound and just living normal lives) comes very very soon.
Posted by: Kim at Dec 16, 2004 8:12:31 AM
I cannot even begin to fathom how hard this must be. You have amazing grace and strength, and are obviously a fighter. So is Charlie.
Just sending my prayers and wishes for more strength and to bring Charlie home very, very soon.
Posted by: Sarah at Dec 16, 2004 8:21:04 AM
Oh Julie...I can't even imagine. Wishing, hoping, and praying for Charlie to gain the strength to go home soon and for you to have the strength you need for this journey.
Posted by: Kristin at Dec 16, 2004 8:47:58 AM
Hopefully your little one will be home with soon and you can bask in his presence all day long.
Posted by: VHMPrincess at Dec 16, 2004 9:28:52 AM
You blow me away. But I'd trade all that insight for just a nice stretch of 'easy' for you.
Posted by: wavery at Dec 16, 2004 9:52:36 AM
Thank you so very much for the update. Everybody at work is now caught up in Charlie's life and we're all rooting for him to come home soon and for all of you to be together.
You're just amazing!
And now I'm leaking snot on the boss. He's going to make me promise not to read your blog at work soon.
Posted by: Scully at Dec 16, 2004 10:15:05 AM
I had to comment, since I was recently reflecting about my daughter's NICU stay on my blog. She was born @ 31 weeks and spent 35 days in the NICU, the days and hours seemed endless... Sometimes seeing is believing.. Stop by and see how far she has come. http://balancinglife.blogdrive.com/archive/98.html
Posted by: emily at Dec 16, 2004 10:18:11 AM
Julie, What a sad image of babies coming and going around you while Charlie lingers. My thoughts are with you. -Joanne
Posted by: joanne at Dec 16, 2004 10:19:12 AM
Delurking here. I was one of those in-and-out NICU moms, and I felt like an imposter for the entire short 48 hours my full-term daughter was there. Just a few years before, I had sat in a different NICU with my niece, born at 30 weeks and 2 lbs 5 oz (IUGR). I witnessed the free fall into the rabbit hole that my brother and sister-in-law went through, and so when my daughter was born, I knew what I was *not* experiencing. I was worried about latch techniques; the parents of the 26-weeker five feet away were worried about brain bleeds. I could barely meet their eyes. I was always afraid to engage other parents in conversation beyond "hi" and "what a gorgeous baby" because I knew what I would have to say if someone asked how my daughter was. How do you say, "oh, she's basically fine" to someone whose baby may or may not come home from the hospital?
Just know that some of us "imposter" moms are sitting in the NICU registering silent hope and sympathy for you and wishing that we could disappear from your view.
P.S. Charlie is *adorable*! Many congratulations!
Posted by: Karen at Dec 16, 2004 10:22:04 AM
We are all out here for you, for fucking forever.
xxoo
Posted by: Anna H. at Dec 16, 2004 10:47:09 AM
You guys are really lucky. Yes, your situation right now is incredibly difficult (my son was born at 31 weeks and was in the NICU for 40 days--I think he just really didn't want to be a Gemini, because he's a perfect Taurus). But you have a ton to be grateful for. I'm envious of your return to health--my preeclampsia was related to kidney disease that first became evident during pregnancy, and the kidneys will eventually fail. (You lucky dog with fixable HELLP!) And if you'd gone to the hospital the first day you puked, Charlie might have been born a couple days earlier. He needed the extra time inside, and you recovered beautifully all the same.
That said, feel free to kick a wall when some 29-weeker born after Charlie goes home first. Or kick a wall just because you're fed up with the stress of it all. You're entitled to as many breakdowns as you need.
Also, if this hasn't happened to you, you're luckier than me: The breast pump was so irritating that I formed a skin tag, which hurt during pumping. And then one day, it was gone. The pump had sucked that thing right off! (Extra protein for baby.)
Posted by: Amy at Dec 16, 2004 11:06:45 AM
Take it easy. You'll be home soon. Lots of love from me to you, Paul and Charlie.
Posted by: AyEnDeeAreEeAyAitch at Dec 16, 2004 11:32:41 AM
Julie - I know I can't understand what it is like. I haven't been there, I don't know, I can only imagine. Please just know that I'm here, thinking of all of you and saying prayers that soon you'll all be home safe and healthy.
Posted by: Mandy at Dec 16, 2004 11:47:54 AM
I know the strength and grace you're showing all of us now will make you a wonderful mother when Charlie goes home. And I pray that he comes home - healthy and strong - soon.
Posted by: ValleyGal at Dec 16, 2004 12:24:46 PM
I just can't even imagine. I know he is getting stronger every day but you must miss being able to snuggle him all the time. What an amazing day it will be when you ALL get to go home together.
Posted by: Amyesq at Dec 16, 2004 12:31:22 PM
It's insane isn't it, but I can so totally relate. All I can offer as a silver lining is that Charlie is obviously FAR better looking, much more intelligent than any of those other kids, and will probably be better endowed as well. And he has the coolest Mom, ever.
Posted by: Tertia at Dec 16, 2004 12:32:48 PM
I always found the NICU scary. I lnow how difficult it is! I'm praying for you guys and think about you often.
Posted by: Jenni at Dec 16, 2004 12:33:18 PM
Given the vast number of comments before me, I'm hesitant to post but, sucking in a deep breath, I'll do it anyway...
Just wanted to say that I enjoy your blog very much. Though I can't remember how I came across it (via I-don't-remember-whose blog), I've bookmarked it. I love your writing style - sometimes sarcastic, characteristically witty, and always charming.
Can't wait until you have Charlie safely home with you. Though my sister did, I can't imagine having to leave your baby at the hospital; my niece was nine weeks early and 2lbs12oz.
Hugs (if you'll take them from a complete stranger).
Posted by: peggy at Dec 16, 2004 1:19:54 PM
Grow, little Charlie! Grow! I'll keep him in my prayers.
Posted by: Sarah at Dec 16, 2004 1:53:43 PM
I hear what you're saying. My son was born at 32 weeks (there are those two weeks you were talking about) and I remember the day we were able to take him home. It felt so strange to be carrying him out of the NICU. We called him our "wireless" baby, the one without the cords and monitors. It was kind of uneventful, but it felt like it should have been a parade, complete with cheering crowds and maybe a band. You're day will come, sooner than you think. As Charlie grows you'll be amazed at how the days will go. You are in our thoughts and prayers.
Posted by: Sarah at Dec 16, 2004 2:19:11 PM
I felt much like Sarah did when I brought my son home from NICU. He was discharged at almost midnight, and I felt almost like a thief, stealing my own baby away in the dead of night. When we got home, only my husband was still awake, waiting up for us. It was so anticlimactic after the ups and downs of his birth and subsequent NICU stay.
We weren't there for too terribly long (2 weeks), but I too saw other babies come, and then go. Babies moved from isolette to open crib, while my son was still struggling to maintain his body temp in the isolette. Babies who were being nipple fed when my son's NG feedings were increased to 2 out of 3. Eventually it was our turn though.
Posted by: Nance at Dec 16, 2004 2:31:27 PM

