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03/16/2005
Reflux redux
Last night was a bad night. There was an awful lot of crying: uncontrolled sobbing, ear-splitting wailing, inconsolable heaving, and a long stream of crystalline snot quivering from the tip of a gem of a nose.
And when I woke up today, boy, were my eyes swollen and bloodshot.
Charlie has been having a rough time with reflux. He left the NICU armed with Zantac; we adjusted the dosage upward as he grew. After a while, he reached the maximum dose, at which point the medication lost its efficacy. A pediatric gastroenterologist switched him to Prevacid, which initially helped and made us almost comically optimistic: one day of two-hour naps and we were sure we had this thing licked.
Not so fucking fast.
Last night Charlie was in pain once again as the acid rose from his stomach up into his esophagus, causing a burning feeling bad enough to make him scream as he tried to drink. He'd shriek, arch his entire body away from the bottle, and twist his neck as far to the side as it would go, emphatically rejecting his milk. Yet because he was ravenous, once the worst of the burn had subsided he'd cry out of hunger. As he screamed, he'd stiffen; there was simply no cuddling him into comfort, not that there ever has been.
It'll get to you after a while. Let's leave aside the knowledge that your helpless baby is in pain and there's nothing that makes him feel better, because that's just plain unspeakable. Instead let's consider the relentlessness of it, the screaming at every feed, the feeling that there's no end in sight: "Reflux usually clears up before the baby is a year old," the books cheerfully promise, not all that reassuring when the baby in question is a mere five weeks adjusted.
Or how about the way it disturbs a baby's sleep, with the pain yanking him from a sound slumber into an abrupt howling cry? Mind you, we don't expect much to begin with, especially considering the following passage from Preemies: The Essential Guide for Parents of Premature Babies:
So let's discount that and focus on the sad possibility that even when Charlie might reasonably be expected to settle down for longer than two hours at a stretch — a possibility that seems fairly distant — he could still be jerked back into agonized consciousness by a simple ill-timed gurgle.
Or we could talk about how beaten I feel when I see his face redden just as he starts to scream. How angry and how cheated, when I remember the hopes I'd had that we might be granted an infancy that was only ordinarily hellish. How endless it seems, this just another twist that stops me from enjoying a pregnancy, a birth, and a babyhood that will only come once.
It'll get to you after a while. After a while, it's all too fucking much.
Last night I cried and cried. I was agitated and upset about everything I've just said, but it was the most absurd thought that finally brought the tears: Charlie doesn't like me.
It's absurd because I understand that for infants his age, liking isn't at issue. Infants his age need and recognize and bond; liking doesn't enter into it. Inasmuch as he can love, I suppose he does, but that blind devotion driven by hunger and a desire for warmth is a far cry from a smile, a face lighting up when I enter the room, a small body relaxing into mine with a sigh of contentment.
As crazy as my thought was, there's a kernel of disturbing truth to it, and that truth is that I'm finding it hard to bond with him at this stage. When he rejects every comfort I try to give him, it's difficult not to be discouraged. When I stay still as he sleeps because I dread waking him rather than because I'm relishing his weight on my chest, it's almost impossible not to feel disgusted with myself. At the moment I'm seeing each day and each feeding and each ten-minute nap as something to be gotten through rather than something to look forward to, and it's deeply distressing to acknowledge that.
Charlie doesn't like me yet. I know he surely will, but every day of screaming makes it harder to believe.
Posted by Julie at 12:16 AM in Mama drama, Welcome to the bad place. Population: You | Permalink
Comments (109)
I know the doctors have probably told you, but as upright as you can keep Charlie the better (crib mattress higher on one end, as upright as possible when feeding). I have reflux and as an adult it is frustrating. I'm sure for a baby it is unbearable - not to mention how difficult it must be for you. Charlie needs you and wants you, he doesn't dislike you. Hang in there.
Posted by: carrie at Mar 16, 2005 12:34:53 AM
Is it possible he has allergies that exacerbate the acid reflux? Maybe there's some kind of formula that is milder... just a thought. okay, it's a little assvice. I really don't know what I"m talking about.
Posted by: julia at Mar 16, 2005 12:41:14 AM
Keep your courage up. All your feelings are within the spectrum of "normal". It is the hardest thing I've done- become a mother for the first time. It was a tough year or two. I now have three children and, believe it or not, the more I had, the easier it became. It's just the rude jolt of this new life and this new identity with the first one that's soooooo tough- extra tough with a preemie, I bet. One day at a time and accept any help that is offered. And, importantly, seek help if you need it- watch out for PND.
Posted by: Jojo at Mar 16, 2005 12:42:58 AM
ouch - my heart aches for you. I can't think of a single good thing to say other than I'm sorry your baby has to suffer this way and that you have to endure his suffering. I hope he catches a break and gets better sooner rather than later.
Charlie is more bonded to you than you realize. Just because he is screaming doesn't mean your touch doesn't comfort him.
I kind of know how you feel as my son screamed for 3 months. I clearly remember coming to an intimate understanding of how people abuse their babies when I could stand it no longer.
Here is some assvice - let people help you. Let someone else hold him and comfort him while you take a break. You need that. If any friends or family offer to help, accept the offer and let yourself have a little time off. Really... it will do you good and Charlie will be fine screaming on someone else's watch once in a while. Just leave good instructions so you are comfortable that he will be handled properly and go out for a walk or take a really nice shower or a nap or something.
And here is another possibly annoying but true statement. Things will get better. You will transcend this difficult time and one of these days you will be playing with him in the park and 'the dark days' will be but a memory.
Posted by: 21stCenturyMom at Mar 16, 2005 12:56:01 AM
Julie. You've probably read this already, but do you have bricks under the head of his cot to tilt it? It really helped us with Bianca. She was five months old by the time we were told though.
Ice cubes to suck on are also great for the burning sensation. It cools it right down and whilst it doesn't cure it helped us to get some nutrition down that damn tube.
Hope things improve.
Katrin
Posted by: Katrin at Mar 16, 2005 12:57:43 AM
My heart goes out to you, Julie.
I do not have a kid, so I will not pretend I have any advice to give you.
I do know you're not alone, though, because I've read at least one other blog about the frustrations of living with a baby with reflux. It sounds heartbreaking.
I'm glad you still have hope that it will get better. I do, too.
Posted by: Monique at Mar 16, 2005 1:26:53 AM
Hi! I have a possible idea for you guys: the Amby baby Hammock. My friend has one for her son with GERD, and she swears by it!
http://www.ambybaby.com/Reflux/
"Suffering from colic or reflux, the Amby keeps them naturally elevated at a 30 degree sleeping angle because of body positioning in the hammock"
For just a couple hundred bucks, it's perhaps worth trying...
I wish you guys luck!
Posted by: christine at Mar 16, 2005 1:44:50 AM
Julie - it DOES get so much better - eventually. I had exactly the same feelings. I know how the minutes crawl by when you have a constantly unhappy baby. It can be pure hell. Like yours, my baby was very much planned and desired but there were many MANY times that I just wanted him to go away and bother someone else and give me a break. It took several months to bond. When he was about 3 months, I remember seeing some toddlers laughing and playing and thought to myself that my boy would never be like them - he'd be a miserable git forever. Well, he's now 2 and a half and a very happy terrorist. Yes, he drives us crazy and there are days we'd still take the option of a temporary trade-in, but we're wildly in love with him. You should hear his rendition of frere jaques! I promise you, you'll feel this way about Charlie too (irrespective of his mastery of French). Incidently, we now have a second son who's 4 months and incredibly content. He's kind of dull by comparison...
Posted by: Kylie at Mar 16, 2005 2:06:25 AM
Of course Charlie likes you. He just doesn't like having reflux!
Hang in there
Margot
Posted by: Margot at Mar 16, 2005 2:23:28 AM
So sorry about this other bump in the road.
My boss's daughter had really horrible reflux as an infant. Her doctor ended up recommending a drug that was some kind of anti-psychotic. (!! Obviously one of the side effects was reduction of acid) It actually worked! Go figure. I don't remember the name of it, but maybe your doctor might know of it. I know you're not averse to pharmaceuticals!! :)
(BTW, hope the previous is not assvice, just sharing an anecdotal nugget)
Posted by: eve at Mar 16, 2005 2:30:49 AM
I hear you. For me, after infertility, the awful pregnancy and the awful birth, it was really like a slap in the face to feel he didn't like me. He really does, though. Yours does too.
Posted by: sleeky at Mar 16, 2005 2:58:50 AM
No advice, just thinking of you.
Posted by: Lioness at Mar 16, 2005 3:34:42 AM
That sounds really tough, Julie. I have no ideas or advice. Just sympathy and compassion, for you, for all you've been through. I'm hoping you get a smile sometime soon.
Posted by: Kim at Mar 16, 2005 3:47:03 AM
I feel terribly for you, because although no one deserves to have a rough time of it with a newborn, you've already been through so freaking much! There really needs to be a point system implemented in this whole parenting thing that evens out the playing field (i.e. each year of infertility = 1 month of relative ease with baby).
Lacking my ingenious point system, however, hang in there as best you can and ride this out. As a good friend tells me often "This too shall pass. Sometimes like a bad bowel movement, but it will pass."
ps: Charlie WILL love you for being the awesome mom that you are today, in this very moment. Especially when you remind him *daily* of his reflux when he is a teenager. In front of his new girlfriend.
Posted by: Mia at Mar 16, 2005 3:57:12 AM
This is so hard - looking after an ill baby/baby in pain is heartwrenching, exhausting and so frustrating.
I haven't got any advice, and there's nothing I can do to help (obviously), but I think about the three of you lots and I'm sorry that you've had it so rough.
Posted by: Layla at Mar 16, 2005 4:34:11 AM
Oh, yeah. This is absolutely hard slog. Dark time of the soul. My daughter had allergy to breastmilk (prob. drunk too much milk, but still). Had reflux, pain in stomach, woke up in pain. Have to be thankful, probably, that it got bad enough that she started bleeding in her nappy, because she finally got some medical response (though slow, very slow). But it was blasted hard and horrible and not a time to be enjoyed. Do people actually enjoy the newborn period? It did get to be good eventually.
Posted by: Izabela at Mar 16, 2005 5:12:21 AM
You probably know this already, but fennel tea is especially great for infants with GERD. You may even be able to buy it as an essential oil and add it to whatever the little bugger's drinking. It has a licorice taste, but usually they don't mind.
It works!
And if you try it and it does, come visit my blog and post a comment somewhere.
doggy
Posted by: dogfaceboy at Mar 16, 2005 5:56:27 AM
Oh Julie, I wish there was something to say that I was confident would make you feel better. Just know we are all thinking of you and little Charlie and hoping/praying things get better soon.
Hang in there because I promise you, this will pass eventually.
Posted by: JenL at Mar 16, 2005 6:33:36 AM
Oh, Julie. What misery for all of you. I hope it gets better soon.
Posted by: Jen (yup, another one) at Mar 16, 2005 7:08:39 AM
Even without any kind of extraordinary problems, it does seem as though the early part of infancy is just about enduring it, for the parents (or I should say, in most cases, especially for the mother, who has the least amount of 'down time'). And it's such a horrible double-bind to feel even worse about some sort of expectation that you are cherishing that time. I rarely felt massive tenderness toward my jellybean in her first year when she was not asleepâthere just didn't seem to be room for it, what with the drain of caring for her, the resentment of the ever-diminishing vanishing point of my own needs (what are those?). It's not that I didn't love her ... but I didn't feel a lot of enjoyment. and I felt guilty as hell about it. That first year is just a 100% disassembly and re-assembly.
Posted by: jilbur at Mar 16, 2005 7:09:22 AM
WARNING!! COMPLETE AND TOTAL ASSVICE AHEAD -- DO NOT READ IF YOU DO NOT WANT ASSVICE!! OK, I've had a howling, screeching, projectile vomiting, back-arching, preemie. We tried everything -- zantac, prevacid, gripe water, thickening his feeds, the whole rigamarole while I pumped and pumped and pumped and never slept. When he was about as old as Charlie (both adjusted and actual) I completely and totally lost it. Same fucking thing. And it's awful. Ask your doctor what the proper dose of maalox or mylanta is for Charlie. Being able to give him that for pain made all the difference in the world. -- switching to soy formula and eventually predigested formula made a HUGE difference too. I'm not sure if it was the additional sleep I got from not pumpimg all the fucking time or the actual formula, but the days seemed a little brighter after that -- truly.
It sounds suspiciously like CHarlie's got more than reflux going on -- email me if you'd like.
ASSVICE --- OUT!!
Posted by: Brandee at Mar 16, 2005 7:14:26 AM
I think we all can understand how you feel he doesn't like you... My daughter had severe colic until 5-6 months... And still wasn't a happy baby until over a year old... I felt detached, had PPD, and wanted to give her up for adoption... Unlike most of you, she was unplanned... So I thought, maybe it just wasn't time for me to be a mother... But she's now almost two, and those days ARE just a memory, like everyone here has said... I'm now 31 weeks pregnant with my son, and I'm VERY nervous of having those same problems again... But I know it's a phase they go through... And don't worry about not feeling those "warm, loving feelings" towards him just yet... I sure as hell didn't feel any towards Madelyn at first! But they will come as he gets older, and you'll be happy you had him... Even though you are living in a never-ending hell of screaming right now... I know what you are feeling... And we are all here for you! And like another girl said, if anyone offers help, TAKE IT! It was the ONLY thing that kept me from hurting her or myself... Yes, it was THAT bad... Good luck... :)
Posted by: Kristin at Mar 16, 2005 7:17:36 AM
As a dog-mom, I have no right to arm-chair-mother. So no assvice about reflux or how to raise a kid -- on that I've got nothing.
In my opinion, though, you both could benefit from a massage. You deserve to be pampered, you've been through enough shit the past few months. And I've read articles that massage helps babies, especially preemies. It won't help the reflux, and it probably won't help the screaming, but it can't hurt...
Posted by: Soper at Mar 16, 2005 7:22:04 AM
My son had terrible reflux. His has improved thank, g-d. I DO have some assvice but I'll save it, unless you ask. I think it might help him.
Posted by: KatS at Mar 16, 2005 7:48:30 AM
Me and both my kids had/have GERD. But only my second one was given Zantac. I can emphathize.
When my baby who is on Zantac is having a really hard time, and she's almost a year at this point, I will give her a dropperful of "Bubble-B-Gone" By Nature's Answer. It calms her done and almost always elicits a big burp and then the ability to eat normally. When I didn't have Zantac for my big one I used Bubble B Gone. It's a herbal supplement of Chamomile, Fennel, Catnip aerial, and Lemon balm in a coconut glycerin base. I love it.
And here's my assvice for the day. It sounds like you need a babysitter for a few hours - or even an hour - so that you can have some space from the baby. I would reccommend you take it by yourself, but you could bring Paul along if you feel adventerous. And do something fun.
BTW, all these feelings you have are normal. Everyone wants to escape seeing their child in pain and feeling unable to help them. It's normal. And so is the feeling that it's never going to end ~ because it's not. You'll have to worry about them and deal with them for the rest of their lives. Even when you're a grandmother. Or so they tell me.
If you're near Brooklyn I offer my time to babysit (and get to meet that delicious boy :).
M
Posted by: Aidelmaidel at Mar 16, 2005 7:52:33 AM
Julie, I don't want to be discouraging but I want to point out a couple of things so you have reasonable expectations...
1. It's biologically normal for some babies to wake up every 2 hours well past a year old. Some babies just do that.
2. My son has reflux and is still profoundly affected at over year old. We tried reducing his Zantac dosage last week and it was awful. I would say it has improved over the time he was a newborn, but not much.
It's hard, it's really hard. I agree with the previous poster who said GET HELP. You need some time when you are not taking care of him, to sleep or to recharge.
Posted by: RM at Mar 16, 2005 7:53:20 AM
I don't have any advice or words to make it better. But you are all in my thoughts. I heard this somewhere that sometimes helps. "Everything is ok in the end. If it's not ok, it's not the end."
Posted by: Jenn at Mar 16, 2005 7:55:24 AM
Hang in there, Julie. The only thing worse than a screaming baby is YOUR screaming baby. Nothing unravels me quicker than when he won't settle. Both my boys had reflux, though not as severe as Charlie. We made it through and so will you. Courage...
Posted by: Danigirl at Mar 16, 2005 8:02:26 AM
You know, Wilder had reflux too (although probably not as bad as Charlie's, Wilder never graduated beyond Zantac). He was on his meds until June 2002, and he was born in Jan 2001. All of his baby clothes are hopelessly stained, there's not a one of them that sits in the memory box looking very good.
A few random thoughts:
Charlie may not like you, but he doesn't dislike you either. He's just focused on his tummy.
At five weeks adjusted, no baby likes anyone. They're just not there yet. I know you know this, but hearing it again from someone else who's been there might just might help. My babies didn't like me, either. They just needed me, and the disconnect -- provide loving comfort to these unresponsive bundles of needs -- was excruciating.
Wilder slept in his bouncer until he was seven months old (we left the vibrating part off, duh). We started adding rice cereal to his formula and to his EBM very, very early. 1 tablespoon per four ounces, used the silicone fast-flow nipples by Gerber because cross-cut flowed too fast. The only real solution was a medicine that worked to cut the acid, until you find that you're going to curse often, and even after you find the magic medicine, it might still not stop the throw-up.
The BEST solution day-to-day was infant-strength maalox (a teeny-tiny dose that the GI doc figured out from the children's bottle) but they stopped making the liquid when Wilder was only a few months old. Have they started up again? Can you order it from overseas? Ask your GI doctor, because if you could find that liquid Maalox or its generic equivalent, you MIGHT be in clover.
Wilder became a much happier kid when he learned to sit unassisted, and that didn't happen until late September, when he was about nine months old (seven adjusted). In retrospect, we should have started propping him in his boppy to learn the method earlier.
It will get better. You will bond. He will adore you.
It will get better.
Posted by: Jody at Mar 16, 2005 8:23:51 AM
Oh, Julie. Sorry you have to wait so long for affirmation from someone who craps in his pants. But it *is* just a wait, not a permanent impossibility. Someday he will (amazingly) love you even more than we do, and he'll be very clear about it. Hang in there.
Posted by: Slim at Mar 16, 2005 8:29:15 AM
A big cyber hug to you.
It is tough, my daughter had reflux (misdiagnosed until she was 3 months old!). Every night, usually between 2 and 3 am, I would drive her in the car for 20 minutes until she fell asleep, then I could nurse her for a short while. I felt so helpless and many times thought of trading her in for a newer model...but we got through it.
Good luck and I hope you all find some relief soon.
Posted by: Susan at Mar 16, 2005 8:31:15 AM
Does he like his carseat? I found that my son slept longer and better in his carseat, so we used that at night for a few months, it was worth the extra sleep and he was happy.
I hope Charlies pain and your trials end very soon!
Posted by: MJ at Mar 16, 2005 8:40:13 AM
Julie:
No useful advice to offer, but it might be useful to know that I felt "cheated" with my first even though she was born at term, and was "ordinary". My feeling of being cheated was because I'd bought into the insane sugar coated soft focus baby adverts, where my first few months were going to be spent with a quiet, nursing baby at my breast, with my husband hovering at my side. Instead, I was desperately walking around with a waking baby, while my husband deposed people hundreds of miles away.
I always tell people that it gets better and better and better.
I'm not sure that my kids "like" me -- my four year old daugher loves to taunt me by saying I'm the "baddest mommy ever, that I'm going to have the longest time out, and that she's never going to play with me again." But I do get affirmation of my importance in their life on a regular basis (They're now 4 and 16 mo).
bj
Posted by: bj at Mar 16, 2005 8:46:46 AM
I don't usually comment, but wanted to offer you some extra support on this issue. {hug}
My first daughter (adopted at birth) was terribly colicky. Like you, I was convinced that she HATED me... that she *knew* we adopted her, and knew I wasn't her *real* mother. I theorized that the reason she didn't settle down for me was because it wasn't my voice she had heard all those months... that she didn't KNOW me, and didn't LIKE me.
In retrospect, I realize that she was in pain, and NOTHING was going to console her. Once I figured out that she had colic, I was able to try some "tricks" to help her manage the pain, but ultimately I think she just grew out of it. Those months were the darkest days of my life to that point (and awfully similar to the PPD I experienced after birthing/weaning our 3rd daughter).
Julie, please know that Charlie WILL love you, and it will bring tears to your eyes when he squeals "MOMMY!" and runs into your waiting arms! Right now, it IS OKAY to cry... cry with him, for him, for yourself... It seems especially cruel that many of us who have endured so much to become mothers don't necessarily get an easy road after Baby comes home. I feel for you!
XO
Jennifer
Posted by: Woodys Girl at Mar 16, 2005 8:49:39 AM
I don't usually comment, but wanted to offer you some extra support on this issue. {hug}
My first daughter (adopted at birth) was terribly colicky. Like you, I was convinced that she HATED me... that she *knew* we adopted her, and knew I wasn't her *real* mother. I theorized that the reason she didn't settle down for me was because it wasn't my voice she had heard all those months... that she didn't KNOW me, and didn't LIKE me.
In retrospect, I realize that she was in pain, and NOTHING was going to console her. Once I figured out that she had colic, I was able to try some "tricks" to help her manage the pain, but ultimately I think she just grew out of it. Those months were the darkest days of my life to that point (and awfully similar to the PPD I experienced after birthing/weaning our 3rd daughter).
Julie, please know that Charlie WILL love you, and it will bring tears to your eyes when he squeals "MOMMY!" and runs into your waiting arms! Right now, it IS OKAY to cry... cry with him, for him, for yourself... It seems especially cruel that many of us who have endured so much to become mothers don't necessarily get an easy road after Baby comes home. I feel for you!
XO
Jennifer
Posted by: Woodys Girl at Mar 16, 2005 8:50:19 AM
Oh, how I know how you feel. My son didn't have reflux and was full term, but there were many times when I just felt he didn't like me. Like everyone else said: It gets better.
I know it's very uncool and you may know lots of moms already, but have you thought of joining a mom's group in your area? Your local hospital can usually set you up with a new mom's group; mine met at the hospital for two months and then we stayed together after that. Even if you don't connect with every one of them, it can be really reassuring to be around first time moms with children your son's age.
Good luck.
Posted by: chris at Mar 16, 2005 8:53:08 AM
I appreciate the honesty. When people are trying to talk you into having children, they make it sound like a nonstop Technicolor Hallmark dream sequence. No one talks about stuff like this. It may not be enough to completely dissuade someone from having children, but at least you're out there saying, "It's NOT like a TV show. It's hard and painful." Thanks!
Posted by: Elle Wiz at Mar 16, 2005 8:53:23 AM
Oh Julie, I am sorry. This sucks.
Please know you aren't alone in worrying about your baby liking you. The flip side is that sometimes I didn't like my baby either. It's something that sucks to live, but for me it passed.
Posted by: LisaV at Mar 16, 2005 8:58:18 AM
My husband was sitting and holding my daughter as I read this, and I asked him, Do you remember feeling like this? His response, Oh Yeah! She is an IUGR baby, had bad reflux, and wore long-leg casts to correct some leg and foot deformities (hate that word). It seemed like all she did was cry and whimper when she was awake. Hours upon hours of walking around with her upright, the only sleep with her on my shoulder in the recliner. It was so hard watching everyone else take their kids to the portrait photographer when mine never looked happy for more than two minutes. Now at a year, she is busily playing her xylophone in my lap, occasionally trying to "help" me type. The only thing that got me here relatively sane was knowing it gets better, and your kid will be happy. He loves you now, as you and Paul are his source of comfort through this. I know you feel more like a caretaker than a mother sometimes, but it gets better and you will get through this
So now for the assvice: I want to second (or third) several people's advice. Cate's reflux was aggravated by allergies to dairy, soy, peanuts, and citrus. Even after all of that was out of my diet, there was something we never figured out that still bothered her a bit, and it didn't go away until I started losing my milk and had to supplement feed her once or twice a day with hypoallergenic formula (I still nurse her part time after a year, so it can be done without killing your milk supply). Maalox also helped - just a quarter teaspoon when she started that gurgling eased her pain (though not entirely). And please find someone to come and help you. He's still little enough that someone else's arms will do temporarily. You both need a break for a while. Consider yourself cyber hugged from me and from a drooling toddler.
Posted by: Carrie at Mar 16, 2005 9:01:21 AM
I'm not going to give you advice because I couldn't possibly know what your going through and I had a colicky (spelling?) baby for 3 months.
I wish you all the best and hopefully he gets over this stage a lot faster then the books say.
take care
Posted by: Jen at Mar 16, 2005 9:01:54 AM
I have been through this reflux hell with three babies. My son that was the worst took three different medications Prevacid, Reglan, and Gaviscon. Before we found the right combination of drugs he was FTT because he wouldn't eat enough.
I nursed and had to cut all diary out of my diet. Perhaps Charlie is effected by something you eat.
Reflux babies also seem to be more comfortable sleeping on their stomachs. I know it's a big no-no, so take it for what it's worth.
Good luck.
Posted by: chris at Mar 16, 2005 9:05:48 AM
I'm sure there's absolutely nothing we can say that will make this any better.
I just thought I'd add my voice to those sending their love. I've read your blog for a while now and this is the first time I've posted... I know we all desperately wanted for you to have an easy (as possible!) time of it with Charlie. Why does everything have to be so hard for you!
Posted by: em at Mar 16, 2005 9:22:11 AM
Two of my kids are refulx kids. Sometimes, differnt medicines work for differnet kids. Zantac did nothing, but mixed with Reglan it worked well. Also, prevacid is good.
Hang in there, and get a break. I've had six kids, and I NEVER EVER EVER like the new phase. Especially if they aren't feeling well. You love the baby with all your might, and yet don't like them at all.
Hugs!
Posted by: Carmen at Mar 16, 2005 9:26:39 AM
Julie, I feel for you, both my girls had reflux and it was hellish. I can remember sitting by my eldest's cot at 4am, sobbing, begging for just 2 MINUTES of peace. Zantac worked OK for dd1 (I'm suprised he maxed out his dose at 5 weeks corrected? Our Pead adjusted dd's dose up until 5 months) but for dd2 we used Losec. Also known as Parental Bliss in a Little Pink Pill. The difference was amazing - we suddenly had a whole new child.
I haven't read all the comments, so this is probably repeating, but other things I found helped: Thickened formula (or thickener added to EBM). Feeding him before he is starving so he doesn't guzzle as fast. Giving the meds 10 minutes before a feed. Keeping him upright for 1/2hr after a feed.
For my girls, it all magically disappeared as soon as they were able to sit unsupported - though I know that means nothing to you now.
Hang in there.
Posted by: gkk at Mar 16, 2005 9:28:24 AM
Julie,
I know that you get al ot of assvice from lots of people but I want to share a few thoughts that worked for us. My Cody, now three was weaned off of his Prevacid just last November, though we had finally found something that worked. We went through three Ped GI's before we found one that was willing to do anything it took to make our son stop crying. I drove 3 hours each way to those appointments but I would have done ANYTHING at that point to make him stop crying incessantly. By the time he was six months old he weighed only 9lbs and could projectile vomit over three feet away. He had been using Reglan and Zantac up to that point but it wasn't working. I think he slept about 2-3 hours a day total and that was in 20 minute increments. We tried the whole elimination diet and then all kinds of formula but it just didn't work for him. We used Prevacid (do you have it compunded into Chocobase or Caracreme? It is much more effective that way) and we gave him his total dose for the day split into two times, AM and PM. By the time we got the dosing right he was up to 25mg of Prevacid a day, only 5mg's less than an adult dosage. Bottom line form the GI was that the more damage he does to his esophagus, the more likely he will have problems later on in life. I bought a Tucker sling for Cody to put in the crib but he hated it, if you would like me to pass it on (if I can find it) let me know. The sleeping arrangement that did work for us was his bouncy chair that had an adjustable back on it. Many nights he slept in a totally upright position on the floor next to my bed. His infant carseat seemed to make things worse sometimes. I know also at one point we were giving Maalox as needed on top of the Prevacid, ask your GI how much, it varies depending on age. I know that this is a ton of assvice and I hope it doesn't irritate you. If you have any questions, let me know!
Posted by: Jennifer at Mar 16, 2005 9:28:52 AM
hoo boy, i can commisserate. last night was a rough night for us, too. CX's eczema medicine has been linked to lymphoma and skin cancer, so of course we stopped using it. trouble is, it's the only thing that worked, and we tried every homeopathic remedy we could get our hands on before breaking down and using the prescription. instead of shrieking instead of eating, CX is shrieking and trying to claw the skin off of his face and chest.
sometimes we mamas can't win.
and on the subject of charlie liking you or not: shut it. he's miserable because he feels awful, not because he resents or dislikes you. he doesn't know how to feel better any more than you know what to do when everything you've tried has stopped working.
and as for being happier when he's napping than when he's awake and upset, i don't think that's a bonding issue. i think that's a rational human reaction. CX is not a fussy baby, unless he feels like he wants to peel his skin off, and i am still grateful for those minutes while he's sleeping and i can dial down the mommying a couple of notches.
i just scrolled up, skimmed, and thought of something else to consider: could charlie be teething??
Posted by: wix at Mar 16, 2005 9:39:59 AM
My daughter has kidney reflux, and I understand all too well of what you speak.
It's so damn hard. :(
Posted by: Stacey at Mar 16, 2005 9:41:46 AM
I am so sorry. It sounds very difficult. [Sympathy]
Patrick did not have reflux, so it is difficult for me to fully imagine how awful these times must be for you. [Acknowledgement of differences in circumstances, with a particular nod to the more severe nature of your own situation]
However, for the first eight months he only slept 10-15 minutes at a time during the day and two hours, max, at night. The rest of the time he cried because he was so tired. But he wouldn't sleep! Ever! So I vividly remember how tired I was and how completely un-fun life was and how nothing I did would soothe Packy to sleep. In fact, I irritated him. [Empathy based on similar response to different parameters]
Little by little he improved, although he was 13 months old before he actually slept straight through the night, and 1 1/2 before he would reliably nap during the day. It sounds like these fine ladies have a number of suggestions that might help Charlie to feel better? [Cautious optimism for future improvement]
Now Patrick sleeps 12 hours a night and takes a great three hour nap every afternoon. I have used the free time to start a multi-continental diamond mining consortium, learn the sitar, and mill all of our own flours. [You can too!]
Everything will get better, whatever it is. If life did not improve after the first three months the species would have died out long ago. Hang in there.
Posted by: Julia S at Mar 16, 2005 9:46:06 AM
This might sound ridiculous, and might also show a bit more about how little I know about babies, but if there's one thing I do know about know, it's reflux and gastritis/esophagitis. I have occasional bouts of severe esophageal pain (with referred pain to my back) especially at night (usually stress-induced for me). Anyway, when my esophagus is feeling that irritated already, the drugs don't really help much. I mean, it will start blocking acid production, but when my espohagus already feels awful, I need a bit more than that. At times like this, I usually chase my Prilosec with a good dose of Tylenol for the pain. It really helps me get back to sleep. I'm not sure if that's an option for you. I mean, you need make sure that your doctor knows that his reflux is not under control and not simply keep masking it with pain medication, but if you already know it isn't, and he's in pain, maybe adding a something like infant Tylenol might help. .(Please note: I do not pretend to know anything about medicating infants, I am just saying what works for me)
Sleeping sitting upright helps as well - and for some reason, after the worst has passed, it feels better laying on my stomach. If he's having back pain with his reflux (not sure if that happens to babies too) rubbing his back might help a bit
Posted by: Alisa at Mar 16, 2005 9:47:55 AM
Minute by minute...just cope minute by minute. I know very well how hearing that "it will get better someday" isn't helpful when you're in hell right now.
Charlie adores you and Paul; it's the reflux he loathes. I'm guessing that for babies, reflux is a lot like infertility is for adults. It casts a shadow on everything.
Hang in there...sending you antacid-y juju.....
Posted by: Tine at Mar 16, 2005 9:48:27 AM
