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12/12/2004
And miles to go before I sleep
Charlie's two weeks old. Friday the doctor said Charlie might be moved as soon as Monday to a hospital closer to home. He'd spent more than 24 hours off CPAP without incident, and seemed to be going strong — the main measure of stability for what's called a back-transfer. It sounded too good to be true, and it was. Friday night as we held him, we could see that Charlie's breathing was more labored than it should have been. His blood oxygen level kept dropping as we held him, and we knew that didn't bode well. Saturday morning, he was back on CPAP. It was a disappointment but not a surprise. "He's not sick," the nurse hurried to reassure us, "he's just tired." That's how I feel, too. For the first few days after Charlie's birth, I was sick. I was also weak and weepy, but the presence of my mother kept me from spending much time thinking about our situation. Then I was running on adrenaline and joy — the baby was doing so well, and I was still so surprised to hear myself saying on the phone to the nurses, "Hi, it's Julie, Charlie's mother," that I felt a jolt of energy every time I thought of him. But now I'm slowing down. I knew we could expect setbacks as Charlie gets older, bigger, and stronger. This is the first thing anyone who's had a child in the NICU will tell you — two steps forward, one step back is the name of the game. (I am sorry to dash your hopes when I tell you that, no, the name of the game is not slamball. Fewer trampolines, more IQ points, significantly lower blood alcohol level.) I'm tired. I have a hard time staying awake in the afternoons, a harder time getting up in the mornings. I'm only really starting to understand the long way we have to go, and it is daunting. The enormity of it hit me yesterday when we approached Charlie's isolette and I heard the telltale bubbling of his CPAP rig, the one I'd been so giddily thrilled not to see at his bedside Friday morning. I have earned a quiet little breakdown, but can't afford one until we're all safe at home. Six weeks from now? Eight? Who knows? Just like everything else, that will take place on a "wait and see" basis. We have a long way to go, and I am already tired.
Posted by Julie at 04:02 PM in Mama drama, Welcome to the bad place. Population: You | Permalink
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» A Christmas shout-out from Jen N Tonic
It's been an amazing year in the blogosphere, especially if you read the blogs I do. I've been following the witty-and-yet-heartbreaking-at-the-same-time writing of Getupgrrl, Julie, Karen, and Tertia for the past year and often find myself laughing an... [Read More]
Tracked on Dec 24, 2004 7:14:44 PM
Comments (32)
Sigh. It's not easy. I'm sorry that you and Charlie and Charlie's father have to deal with this.
Posted by: Rose at Dec 12, 2004 4:05:22 PM
*HUGE HUGS*
Love you babe.. if you need me.. just call.
Posted by: BrendaS at Dec 12, 2004 4:22:23 PM
Hey Kid...
I think of and pray for you three everyday.
and I must say,
motherhood
becomes
you.
lucky Charlie.
Posted by: Upnorth at Dec 12, 2004 4:32:43 PM
As the NICU nurse told my best friend about her 25 weeker "It's a marathon, not a sprint,take it one mile(stone) at a time". Just know you have many, many cheerleaders out here rooting for you and your little guy every step of the way.
Posted by: karla at Dec 12, 2004 4:39:00 PM
Oh, love.
That Frost poem is appropriately grim: "These woods are lovely, dark and deep..." is, I think, a meditation on giving in to that oblivion.
But you and Robert Frost have promises to keep, and so, I guess, you keep plodding ahead. I wish you restoration, people to prop you up in the meantime, and most of all, a vibrantly healthy Charlie.
Posted by: Jo at Dec 12, 2004 4:41:50 PM
I can only imagine how difficult the whole NICU journey will be. I pray each day that the three of you will continue to grow in strength throughout.
Posted by: Miss W at Dec 12, 2004 4:55:38 PM
You guys are never far from my thoughts and always in my prayers. Sending you lots of energy vibes. You are doing just fine mama!!!
Posted by: Stephanie at Dec 12, 2004 5:16:26 PM
We all hear the weariness in your words. And if ever there was a group of people who wish we could send you care packages out of our own stores of emotional and physical resources, it's us.
But for now our good wishes, prayers and positive thoughts will have to do.
Hopefully, by the time you allow yourself to have your breakdown, you'll realize that you've grown strong enough to not need it.
Posted by: JenL at Dec 12, 2004 5:25:19 PM
Wishing you brighter days and hidden stores of energy.
Posted by: Brooklyn Girl at Dec 12, 2004 5:39:59 PM
A few days ago I started drafting a post that began, "The adrenalin is starting to wear off." That was before we were holding Charlie and watching his saturation heading for 70 and pulse for 30-something, politely tapping on his chest to remind him that breathing and circulating blood really aren't optional for him any more.
So maybe the adrenalin isn't so much wearing off as wearing out. But as long as he's resting comfortably and gaining weight and stuff like that, we just try to remember that babies don't grow on internet time. (If the first two week have us this frazzled, just wait for the next 18 years...)
Posted by: Paul at Dec 12, 2004 5:54:43 PM
((((((((Huge Hugs))))))))
The NICU path is a hard one. It is truly two steps forward, one step back. And some days it's one step forward, two steps back.
I am keeping you all in my thougts for your journey and hoping that the steps forward are giant, bounding leaps, and the steps back tiny, mincing, baby steps.
Posted by: The Good Rachel at Dec 12, 2004 5:57:23 PM
Just try to remember, THIS TIME WILL PASS!! Just like pregnancy that seems to take forever, when you look back, the time went by fast. The same is true here. This is eight weeks (give or take) of Charlie's life, a small amount of time compared to the lifetime that lays ahead. Stay strong, we're all pulling for your family.
Posted by: Elizabeth at Dec 12, 2004 6:09:45 PM
Cannot imagine what this must be like for you and Paul but you are in my thoughts. And Charlie - well - GO BATMAN, GO!!!!!! is my new mantra.
Wishing you strength and joy.
Posted by: Jess at Dec 12, 2004 6:12:47 PM
Prayers of strength & healing & growing coming at you from Maryland. I promise.
Posted by: Amber at Dec 12, 2004 6:22:44 PM
I'm sorry re the setback--who needs this rollercoaster ride? Good wishes to you all. And I used to have that Frost poem going through my head *all the time* when my daughter was a baby. You will keep all your promises, I know.
To anybody sending Julie nasty email: fuck off. I mean it.
Posted by: emily at Dec 12, 2004 6:34:06 PM
You don't need to hear it again, but for good measure, the NICU is two steps forward - one step back. He's still making progress. As a mom who watches her three year old tear ass around the house in what we call "destructo mode", I can assure you there will be a day when you look back at the relative calm of your NICU experience and say, "That's what I was so frazzled by??". Time will pass, Charlie will grow, and before you know it you'll hear him say those three little words that warm your heart, "You're a fucknut" - as my darling so lovingly did today. Good health and go Batman!!
B
Posted by: Brandee at Dec 12, 2004 7:03:21 PM
I'm so sorry, so sorry for all you've been through. You're dealing remarkably well, but I think you too can expect "ups and downs," just like Charlie. My daughter was in the NICU for a mere 9 days. and it still took me the better part of a year to work through all my feelings about the experience (and the pregnancy and birth were normal, for heaven's sake). Go ahead and allow yourself that breakdown even if you're not home yet. We're all thinking of you.
Posted by: Shelley at Dec 12, 2004 7:03:42 PM
He's gonna make it, he's gonna make it, he's gonnnnnaaaaaaaaaaaaaaaaaaaaaaa make it! Wishing you sanity. (if possible.)
Posted by: Jaine at Dec 12, 2004 7:26:31 PM
Julie,
I know how exhausting the whole NICU thing is - the anxiety, the pumping the post partum night sweats etc. Six months from now you won't even remember much of it. Two weeks down hopefully only a few more to go. So happy to hear how well Charlie is doing.
Alix
Posted by: alix at Dec 12, 2004 7:48:05 PM
Oh, Julie and Paul, I can't even imagine how tired you must be. It would be exhausting enough to have your son in NICU even WITHOUT the pregnancy complications, Julie being so deathly ill, and the C-section. You are both doing incredibly well with all of this; it is just plain difficult, and we are all hoping that Charlie will continue to improve and you can soon be home. Keep on keeping on--rooting for you in a huge way from Colorado.
Posted by: terri c at Dec 12, 2004 7:55:02 PM
Sending you many prayers so that your stay is short in NICU and you're on your way home with Charlie soon.
xxoo,
Posted by: Emily at Dec 12, 2004 8:16:38 PM
I have no words of wisdom, just that this is the hardest and most worrisome thing I've ever done (being a mom). I am thinking about you three everyday and hoping my best wishes may have some effect in the universe.
Posted by: KatS at Dec 12, 2004 8:59:50 PM
My baby was in NICU for four weeks. It was a terrible strain. But at least you get to sleep at night - which you need to do, to recover physically from what you've been through. When my babe came home, I had the mini-breakdown, partly as a delayed reaction to the trauma we'd just been through and partly because of sleep deprivation, which I'd been sheltered from when he was in hospital. My advice is to take it as easy as you possibly can now - if you are tired, take a lot of naps. Take it in turns to be with Charlie, don't both be there all of the time. When he comes home, it will be harder to rest.
Posted by: suze at Dec 12, 2004 9:20:26 PM
I'm with Suze. Take this time to take good care of yourselves! When he comes home there will be even more exhaustion to factor in. Rest and recover whenever possible now. Charlie is going to need a healthy rested Momma when he gets home very soon. Be GOOD to yourselves. Nap.. sleep in.. heal.
Charlie has become my little hero :) Congratulations again Momma!
Posted by: amy at Dec 12, 2004 10:40:37 PM
Julie, on top of Charlie's situation you've endured major surgery and life-threatening illness. It's probably easy to forget that with Charlie (MOST UNDERSTANDABLY) at the forefront of your mind. I had a C-section as well, but not the major illness that you had. It was a good three weeks before I felt fully functional, and a full six before I felt anything resembling normal. And then there's the post-partum hormone drop...
You are incredibly strong and amazingly wise. I'm thinking of you constantly.
Susy
Posted by: Susy at Dec 12, 2004 10:47:45 PM
I've been where you are... there isn't much worse than what you are feeling right now. When you speak of Charlie's condition, you described my son's previous condition almost exactly. But now my former sickly, underweight preemie is a strapping 8 year old. He's healthy as an ox and Charlie will be too. Even still, every time he gets the sniffles I go into immediate panic when I think back to the tubes and the IV's and the monitors... Anyway, here's to the light at the end of the tunnel... hoping you reach that light soon :-)
Posted by: Amanda at Dec 13, 2004 9:44:32 AM
Oh, Julie, I'm so sorry that you and your husband have to go through this. Reading your post, I so remember when our son was in the NICU (he was a 27 weeker). I wish you didn't have to go through all of this!! When they told us that he would probably be in until his due date, I felt so overwhelmed--I didn't think I could handle it. But I did. And after 11 weeks, he came home. We will never forget it, but the stress of it all had become a distant memory now.
Wishing you the best and that time passes quickly until Charlie is home with you.
A lurker
Posted by: Kristi at Dec 13, 2004 11:06:16 AM
You are certainly entitled to have some breakdowns if you want to. You are allowed to feel the disappointment keenly when Charlie has the inevitable NICu setbacks, and you are allowed to feel sorry for yourself, just because. You can have the breakdowns in the car, during naptime, in the evening, whenever. Take advantage of the highly skilled nursing staff watching over Charlie to have as many breakdowns as you want. Then you can have some more, in the privacy of your own home, after Charlie comes home. (I allowed myself maternal breakdowns from the 14th week of pregnancy through, oh, about age 4.)
Seriously. You've had stress (infertility) upon stress (complicated pregnancy) upon stress (HELLP) upon stress (having a kid in the hospital), upon postpartum hormonal shifts. You win a medal just for getting through each day right now, with or without breakdowns.
When my son was in the NICU, my dad (uncharacteristically) called me "Super Mom." I now bestow the title on you.
Posted by: Amy at Dec 13, 2004 11:09:16 AM
"Hi, it's Julie, Charlie's mother," ,
such a simple sentence, Julie, had me bawling. I"m so very glad that you are able to say that. I'm sure you will be as wonderful a mother as you are a person.
Much love,
Scarlett Cyn
Posted by: Scarlett Cyn at Dec 13, 2004 1:35:03 PM
I second what Suze said. Take advantage of the ability to rest up now.
It was so odd to me to be sleeping at night for the first two weeks after my son was born. I have a 4 year old daughter, so I have vague memories of the total and utter sleep deprivation of those first two weeks, and missing that added to the strangeness of coming home from the hospital without my baby. I knew however that I needed to be as healthy as possible for him when he came home, so I forced myself to get as much rest as pumping every three hours and caring for a 4 year old would allow.
Logically, you know to expect XYZ, but all bets are off when it's YOUR baby. You know that Charlie is likely to have setbacks, but that doesn't help when he has one. I lost it when I had to sign the consent forms for my 4 lb son to have a lumbar puncture. Logically, I knew that was the next appropriate step, but when it came down to MY baby, signing those forms was one of the hardest things I had to do.
Hang in there and try not to look too far ahead. Take it one milestone at a time, and REST. Paul - make Julie rest.
Posted by: Nance at Dec 13, 2004 3:53:44 PM
Oh Julie. It is exhausting, isn't it. And the steps backwards--especially when they involve breathing--are so disheartening. It sounds like you are in the care of good nurses, and that makes all the difference (or at least the scarcity of them in our NICU affected me profoundly). But I cannot imagine, cannot wrap my mind around, the idea of being far from home, recovering from a c-section/HELLP, and commuting daily to the NICU. The day when I crawled back into my own bed, as hard as it was to leave the babies behind, was the day my own healing began.
Oddly enough, many of the steps backward in the NICU are followed by huge multiple steps forward soon after. I pray that Charlie is off the oxygen and on the road for home as soon as possible. Being in your own home, even without your baby, will make a huge difference, I think. And then I'll pray that the next 4 or 5 or 6 weeks simply flies by, and you're all home safe and sound for Valentine's Day.
Posted by: Jody at Dec 14, 2004 1:59:20 PM
wow
Posted by: Alex at Jan 16, 2005 2:05:08 AM
