Pages

Sunday, January 04, 2009

Reflux Blues

I've mentioned that we believe Quinn has reflux. What I haven't really gone into is saying how hard this is. Maybe this is why some have commented on my general "downer" mood as of late.

I think I've avoided really posting anything about it at all, as I felt I had nothing to complain about. Yes, how in the world could I complain about my 6 week early son, who only spent 3 weeks in the NICU. He smiles at us, he giggles at us. His smile is so amazing, it’s the most heart-warming enduring thing that I could ever imagine. We never got to experience this with Kaitlyn so how can I complain?

I know too much about all the other Micro moms out there that have so many more severe issues that they are dealing with. I also know so many of my friends whose children have long-term disabilities, either from being a micro-preemie or from other birth defects. I've met so many since my life changed.

Oh, and I can’t forget to mention the fact that a crying, fussying, spitting-up, screaming, short cap-nap and constantly eating round-the-clock baby (and gorgeously smiling happy/giggling when he's not doing any of the prior) doesn't leave a lot of free time to blog in the first place.

I feel bad about complaining because he's eating. He's thriving. He's not projectile vomiting. It's only Spit-up...He's amazing. he's wonderful.......But he is completely wearing me out. At times to the end of my limits. But how can I complain? Isn't this just "normal" motherhood? I wanted another child. Isn’t this just what it’s supposed to be like? I don’t know what’s “normal” anymore. I do feel ungrateful and like a horrible mom for complaining (this thought having nothing to do with some of the comments left on my last posts)

How can I complain? So I've been silent on the subject.

But Brian and I are having a tough time. our son has bad reflux and I feel extremely, extremely tired, worn-out exhausted and really frustrated. I have done all the research and our poor little guy isn't getting help.

I’m sorry to complain, but this post is it. It’s going to be a downer. I’m going to complain, I can’t TAKE it any more without letting some steam off. If you don’t want to read a “negative” post, then skip over this post. I don’t want to hear negative comments of how bad a mom I am a this point. Really. I’m NOT in the mood.

He is no where close to sleeping through the night. He goes either 2-3 hours at most. and oftentimes can be refluxing/fussy/eating/colicky/crying/dosing for 2 hours straight.

Here is a 2 hour recap of my last 2 hours tonight (the good news is that this happened during the daytime hours as opposed to the middle of the night when it usually happens):

(not sure of the exact time when this started so the hours are approx, but I do know it lasted 2 hours...)

Kaitlyn missed her nap today she was a bit cranky (and hungry) to top everything off.

6:00pm Quinn woke up screaming (he never naps more than 20 minutes at a time)
Got him some milk as soon as I could. He took about an ounce before pulling off the nipple and fighting me. Got really stiff and arching. Started crying again. Burped him (burping him is NOT easy, it can take a LOT of time), spit up all down my shirt. he settled down, tried to see if he'd eat more, he wouldn't, cried, pacifier (we call it pacy) settled him down, he almost fell back asleep, so I put him in the bassinet, as I was trying to get food ready for K.

5-10 minutes later, as I was trying to feed K, he woke up and started crying urgently again.

He was arching and stiff, clear signs that he has a burp. Worked 5 minutes to get a burp, finally got one, with a lot of spit-up again. After the burp, he ate almost 3 ounces (that’s a LOT for him to eat at one time), his max is usually about 2 ounces at a time. Got another good easy burp out of him. Gave him pacy. he started to sleep again in my arms, but him down. . Had finished feeding K and was going to use this nice time (a rarity for Q to be sleeping) to give K her bath and read her book and have nice quiet mom/daughter time. No go. He slept for 10 min or so and then woke up again.

K had a poop, and was cranky and wanted my attention, Quinn was fussing Tried to give him back pacy, he spit it out, his crying increased. tried to give him back pacy, rock him his crying increased, now it was becoming an urgent cry, Picked him up, tried to burp him, he was now screaming, (K was whining at my legs at the same time of course) tried to burp him, nothing. You never know, as sometimes it can be sooo hard and super long until you get a burp, so you never know really what he wants. (This makes me feel like a horrible mother).

Realized that I hadn't given him his 2nd dose of Prilosec for the day....(story continued below)

(now this is a side-subject because our Pediatrician has only prescribed him 1/2 tablet of Prilosec a day (7.5 mg) with our without food. I had some left over from Kaitlyn and we are almost out. I have a call/email into our GI doc from last TUESDAY as our Pediatrician said she can't dose any more than the 1/2 tablet she already is prescribing.

According to www.marci-kids.com the ½ tablet that we are giving Quinn (without our whitout food) is 1/3 the dose that he should be receiving. Also, it is supposed to be given on an empty stomach. How in the WORLD do you give it on an empty stomach when your baby eats ALL DAY LONG? The site clearly says that PPI's (prilosec) are routinely under-dosed. I even faxed all this info to our pediatrician.

My request went on deaf ears. I was asking for another medicine (Zegerid) that I had described in a previous post on reflux and asked her to write my insurance to ask for it, she said that I'd have to talk to GI at this point. (and she' d put in a referral).

(According to Marci-kids: " Zegerid is currently the only FDA-approved immediate-release formulation of omeprazole, and is very suitable for giving to children and infants. It contains omeprazole, a PPI that is approved by the FDA for pediatric use. When mixed with water, the powder dissolves to form a true, homogeneous liquid suspension with a peachy-mint flavor. Unlike enteric-coated PPIs, which must be taken 30 minutes before a meal, Zegerid can be given without regard to mealtime.")

I emailed/called our GI on Tuesday, never heard back, called the GI's nurse on Friday, she called me back saying it would have to wait until Monday, as Quinn has never been seen by our GI and that the nurse would call our pediatrician. Oh, and I asked our pediatrician for Zegerid about 4 weeks ago now after I said Zantac wasn't working


....anyways, back to my recap: I diluted the tablet in a spoon with a tiny bit of milk, spoon fed it to him, lost quite a few prilosec "granules" down his chin (very hard to administer this drug orally as compared to K's gtube - see, how can I complain?))

Tried to give him milk again. Lo and behold he took another ounce. He pulled himself off nipple and started arching. (reflux sign) Burped him, (he always cries after burping, a clear reflux sign) settled down again put him down yet again went to change Kaitlyn's very runny poopy diaper (reminds me that's another post I need to do as she always has very runny poop)

Heard Quinn start to fuss/cry again. Ugggh. holy crap. F$%)# Shit and all. Bad language is coming to my head (not out lout due to K's sake) I'm staring to really loose my patience at this point. This "fussy" session has now been going on for over an hour. I can feel my blood pressure start to raise. I'm feeling sorry for myself and doing my best to try to survive. I've got to get K in the bath. I put her half dressed on the floor and tell her I've got to go attend to Quinn. He's really screaming again. I pick him up, he's stiff as a board, burp him, he spits up all over me and the floor behind me. I try to see if he wants any more milk, he gets upset, starts crying with the nipple, pushes it away, so I give him pacy, he calms down and he drifts off after rocking him so I put him back down.

Kaitlyn is loosing it at this point too, she can tell mom is upset and she's really cranky without her nap (even thought it's about an hour before her normal bedtime). really cranky. Getting into one of her repeating/whiny modes.

Oh my god, I need a glass of wine. (I'm sure you realized that Brian wasn't home). Then I always say to myself, Liz, you can't complain. You wanted a 2nd child. Quinn is almost full term. He's a "normal" baby, this is just regular old motherhood stuff. Stiff it up. Don't complain...

You suck is also what I was saying to myself.

This doesn't seem normal on one hand, but I don't have the faintest idea of what normal is or should be like.

Ok, sorry to regress again…

Give K a quick , (VERY quick) bath as she was complaining the whole time (note to self, K is NOT ready to give up her nap yet) , dress her, and lo and behold guess who I hear AGAIN and on top of that I hear a beeper going off, I forgot that I put something in the oven for me and the timer was going off….try and shut my ears….He can just cry for a bit. .. (the swear words to myself are really getting bad at this point).

Ignore Quinn. Read a SHORT book, K starts crying, wants another book. I ignore her and put her to bed. She’s fine, she’ll be asleep right away. Thank GOD that Kaitlyn is a great sleeper. See how can I complain???

Walk out to the bassinet. Pick up Quinn, he’s stiff, stiff, stiff burp him, feed him, etc, you get the drill.

Now that K is down, I have time to get Quinn ready for night-time bed (Trying to do what I can to sleep train him by doing a night time ritual, diaper, PJ’s sleep-sack, some milk, bed). Have to bring her back to K’s room (which will be their shared room if/when he ever starts sleeping at night). K of course hops up and starts wanting water, tell her I’ll get her some, Quinn starts smiling at me as soon as he’s on the changing table and I say to myself:.

Horrible, horrible mother, how can you be so upset at this amazing sweet little boy who is smiling up at you – how can I have those frustrated feelings while I’m trying desperately to get him to burp? UGGGH…..

My food hadn’t cooked enough, so I had reset the timer for 10 minutes. Saw that there were 5 minutes left on the timer, thought maybe I should turn it off in case I’ll be awhile again….

Bring him to his bassinet in our room, give him more milk (wow he takes more, another ½ ounce), burp him, (man I really need to change my spit-up covered shirt by this time) see if he wants more milk, he doesn’t as he pushes nipple away and cries, give him pacy, he’s happy, settles a bit in my arms (typically what he does when he’s really content), but I can tell we aren’t done yet. Timer of course is going off.

Put him down, I’m STARVING. We are now about 1 hour and 30 minutes into this fussy/crying /eating ordeal….Get my pot-pie out of the oven, I get a class of wine, I sit on the couch, and 4 minutes later he starts crying in pain again.

Holy Shit. I can’t take it. WHY can’t I get the medicine that I think he needs? A fellow online micro mom just told me that her daughter (also 13 pounds) is on 2 full tables of prilosec a day! And our fucking doctor has given us ½ tablet. UGGGGH, I’m so upset at this point.

Do I suck at this mother hood stuff or what I ask myself yet again.

I get more milk from the fridge, (Damn my boobs hurt as I’ve delayed breast milk pumping for the last 2 hours over this whole ordeal).

Go in, try to calm myself. Pick him up (much too abruptly) get a huge burp (Oh I may not have mentioned that of course we have him sleeping on an incline), see if he wants more milk, he takes about 1/3 of an ounce, pushes away, but this time doesn’t cry while pushing away. He’s gently kneading my shirt. Oh, I think he’s finally settled down. Oh I love the kneading. It calms me down. I give him pacy, he takes it easily and practically goes limp as I cradle him. I love my little man, but he is giving me a run for sanity.

How can I have all these horrible thoughts. It’s now about 2 hours after this started.

This happens a LOT!

This same ordeal above happens also in the middle of the night. He awakes from sleeping and eats, pulls away from nipple, burp him, see if he wants more, he refuses, put him down, sleep for a few, then the fussing starts, and this goes on for 2 hours.

During the day he often wakes crying in pain after a quick 20 minute nap. The most he eats at any one time is about 3.5 ounces, but that’s really, really rare. His usual is about 2 ounces at a time.

Uggh. I can’t complain. Isn’t this just normal hard newborn stuff? I have no idea really. I feel horrible guilty complaining. I think back on all that we went through with Kaitlyn and how can I complain.

But I’m somehow starting to think that this isn’t normal. God I hope that our GI calls tomorrow. I’m emailing/calling her again, with a desperate plea for help.

Been too busy writing this to drink my glass of wine. And THANKFULLY since the last episode he has gone down. I KNOW he’ll be up again about midnight though, with at least 2 or 3 times after that

Sigh....

Time to hook myself up to the breast pump

Or, darn, as I’m trying to post this, guess who just started fussing again? It’s 10:45pm…
big sigh.....

Added: 1/5/09:

Thanks everyone for your great suggestions: Here are a few more notes

1. I've tried Mylicon, no change

2. Tried Zantac, worked for a bit, but still Quinn was screaming

3. We keep Quinn upright at all times! he sleeps on a ramp/incline, but maybe I need to carry him in a baby carrier which is totally upright.

4. I'm currently almost completely dairy free in my diet, as he is getting fresh pumped breast milk, this has been hard for me to be 100% dairy free as I'm too skinny now and having trouble finding things to eat. I'm actually weaning from the pump. Just too much going on. I decreased from 4x a day pumps to 3x a day in the last 3 days. I plan to stop as soon as I can. I know that I have MONTHS of milk in the freezer, maybe that's why it was tough for me to admit that possibly he might have dairy issues as that was a lot of effort in my freezer...uggh.

35 comments:

Kendra's mom said...

Hi Liz. Give yourself a break! You are going through a tough time and I am sorry that you feel you shouldn't complain. Reflux is not a 'normal' experience. It does not happen to all babies. Just because the issues you are having with Quinn are not as severe as those with K does not mean you cannot complain. By the same token, every mother goes through those feelings of frustration with their babies no matter how hard or easy the journey to that point was. It is the level of guilt that accompanies it that differs I think.

Sorry I can't give you any practical advice but I wish you good luck with getting the correct medication.

Anonymous said...

Hi Liz! I also had a horrible time with my eldest son and reflux, the meds helped but the only thing that really cured it was time. By 9 months he actually started keeping feeds down. Have you tried an upright baby carrier for Quinn, the type you "wear" on your body? I'm thinking particulary during suicide hour when you need to keep him calm and have your hands free for K.

I hope you get his meds sorted out soon!

Regards
Mandie
Mommy to (nearly) 4 kiddies.

Becky said...

Hey Liz- My 35 weeker(4lbs 12oz) had horrible reflux. Would close her eyes and scream bloody murder, I would feed her, try to burp her burp(it was almost impossible to burp her), she would seem content for a few minutes and then would projectile vomit. Our doc refused any meds but had us put her in her carseat after every meal instead of putting her flat on her back in the crib. It helped a bit and as the other commenter said, time was the cure. By 5 months, we were officially done with reflux. Hang in there, I hope Quinn outgrows this soon! I remember worrying if something was very wrong with my little newborn and then one day it just stopped.

Lisa said...

Hi Liz, sometimes reflux babies are also aggravated by something that is coming through from their breastmilk or formula, usually cow milk proteins. An elimination diet is a super pain in the butt (I was dairy free for 10 months, I know), but it may help with the pain level, in addition to the medication. If you decide to try eliminating dairy, it may take a good 4 weeks to see full results, but you should get at least a hint of whether it makes a difference after a few days.
Some more info:
http://www.cryingoverspiltmilk.co.nz/Food/FoodandReflux.htm

I would be especially keen to try this if Quinn has any other symptoms of a dairy allergy, such as eczema or blood pinpricks/streaks in the stool. It made all the difference for my daughter, and maybe you have ruled this out, but I figured it wouldn't hurt to mention it in case you hadn't heard. It took a lot of digging for us to figure this out. The ped was very dismissive that this would help at all. The next ped totally agreed that the elimination was the right thing. Go figure. If you're ready to stop pumping anyway, a trial of a hypoallergenic formula might be an option. I wouldn't try soy as an alternative to cow milk, I'd go right for the hypo.

Also, are you being treated for PPD? You don't have to answer, and I'm sorry if I missed where you said before. I usually skim blogs through a reader and don't click over. It's incredibly stressful to have a child with medical issues, much less two, and anyone would find that a rollercoaster. But I see a hint of how I was feeling with PPD in the degree of your reactions and the self-blame and general exhaustion. If you haven't been screened, give it a go? A diagnosis wouldn't fix the kids' issues or situational stuff, but it might help you deal with things in a way that feels better on a day-to-day basis. I thought I was plugging away with situational difficulties, but in retrospect, the difference in some treatment and no treatment was vast. It's easy to come last when you have extraordinary kids with extraordinary needs. I'm by no means saying your situation isn't just $#@! hard on its own.
xo!

Phyllis said...

Hi . I have been reading your blog for a while . I have never posted a comment before but after reading this i thought I would . And dont worry its not negative :)

My son Luke , also had terriable reflux and a hard time burping him . It was hell. But I finally found a way and it worked like a charm every time .

I would sit him up on my lap sideways and but him legs between mine and with one hand behind him and one in front we would do "baby sit ups" by rocking him back and forth about 4-5 times and if a burp didint come out right away a couple pats on the back and some more "sit ups" always did the trick :) Maybe it will work for little Quinn too .

And I also know all to well about the spitting up . I finally got to the point where we would just throw the clothes and blankets away. It started to become WAY to much laundry . LOL :)

Hang in there , your doing an awesome job

Anonymous said...

A friend taught me about reflux so that I wouldn't have to worry about it with my coming baby. First of all, with all three of my daughters I gave them mylicon(sp?)for gas and store brand is just fine. My first 2 were very gassy and refluxy. They had to use lacto-free formula. Then with my third daughter, we started her on soy formula right when she was born. That worked really well. She still had some gas (mylicon again). But this baby never spit up once because of a friends advice. She said NEVER lay the baby down after feeding her. When they are newborns, wait 30 minutes. When they are a bit older (4 or 5 months) and more alert, wait an hour. Just burp them and then play. I am telling you Liz, this worked like a charm! She slept through the night at 7 weeks and still does. As an adult with reflux, I never lay down after eating. I can't because it's too painful. I also take Prilosec to keep it at bay. SO Mylicon, keep him upright for a while, try formula (?). Oh and if anyone tells you that you are a bad mother because you try something besides breast feeding, tell them to F off! I did! You are a great mother and I believe in you!

Stephanie -long time reader

Anonymous said...

Sorry you're having such a hard time Liz! It will pass... going from one to two kids is hard. Even harder when you have a fussy/reflux-y baby. My oldest is 4 and was a 26 weeker but once we got her home she was the easiest baby, great sleeper, eater etc. My second was full term and the hardest baby ever. He didn't have reflux but he never slept (in fact he continued to get up every 2 hours for over a year and a half), constantly was breastfeeding, at least every hour. It was very hard and I would get so frustrated. But it did pass and he is now 2 years old and finally sleeps through the night and is a happy little guy. And the awful first 6 months don't seem that bad anymore and seem like it happened a loong time ago.

You ARE an amazing mother and you will get through this.

Anonymous said...

I agree with several of the comments, having dealt with reflux, BIG helps to try:

- watch your diet carefully, it's potentially a strong tie to his reflux since you're breastfeeding. This includes dairy, certain vegetables, processed/packaged foods as well as the obvious...spicy and richly seasoned foods.
- put Quinn upright (or at a strong incline) after eating/burping. No swings or moving contraptions.
- frequent and small feedings means a lot more air intake and potential GI irritation. Easy for me to write, but perhaps bearing through some of those fussy intervals, being less responsive and moving toward less frequent feedings.

I SO feel for you right now, Liz. Hang in there, you're doing so well!
Maria K.

Jessica said...

My daughter had really bad reflux (a twin who was born at 35 weeks - her brother didn't have reflux) and it sucked. My pediatrician (who's SF-based, fabulous and may be taking patients if you're interested) was really supportive. The only thing that worked (and we tried everything!!) was increasing the doses of Prilosec to the max allowed (our pediatrician actually pushed us to do this), feeding her every 2 hours, and propping her up for 20 min in a bouncy chair after each feeding for the first 5 months (once we started this routine, she began to sleep at night for a 5 hour stretch). I also ran out of supply of breastmilk at 4 months, and I know this is un-PC to say (and I'll probably get flack for it) but her reflux did improve when she was just on formula (and I tried all the elimination diets when I was breastfeeding to no avail). She was on Prilosec for 9 months until it went away completely.

Hang in there - reflux really does suck, and you certainly have the right to complain!

Jennifer said...

whoa... you pretty much described my day.

Sucks doesn't it? :(

I don't blog about Daria's troubles because I feel it makes me look undeserving or something... I got a kid 2 days shy of full term, I should be grateful!

Her reflux is getting better, thankfully. We won't be doing 2+ years of meds like Arianna, but it royally sucks, just the same.

Hang in there Liz - it'll get better!

Kristina said...

First, I send hugs your way. ALL moms feel this way from time to time. How much more so moms with children who have medical issues!

About the reflux...Doctors are real drag about this even when babies aren't eating well. They tend to prtty much ignore it when your child is gaining weight okay. Still, I would find another doctor. Call around and ask to interview pediatricians. Tell them your feelings about reflux and medicine and ask them how they usually deal with the issue. Not all doctors deal with it the same way.

Second, you really must get more rest. I know this from personal experience! when you're exhausted and seriously sleep deprived, the whole world seems bleak. You think negative, resentful things about your kids, you don't get along with your husband, and all you want to do is escape your life. So much of that will go away if you just get sleep.

I know, I know. You have lots of excuses for not getting more sleep. There's so much to do! But sleep MUST be a priority for you. It will make you a better Mommy and wife, trust me! (Again, I speak from experience!)

Surely there are things you don't HAVE to do that you're doing now. Can you cut back on your living expenses so you can work less? Do less housework? Step away from volunteer work? Spend less time watching tv? And on top of that, can a friend or family member take over a few mornings in a row so you can get "caught up" on your sleep?

Hugs,
Kristina

maggiesmom said...

Hi Liz-
I have been reading your blog over the weekend. I work as a neonatal nurse practitioner and to say that your blog has opened my eyes to what our parents go thru after they leave the NICU is an understatement to say the least. Reading your blog has made me want to reach out and jump on a plane and help you, hug you, hug your kids and give you a reprieve. You (and your husband) are certainly deserving of some time off. I have one child and my husband reminds me frequently that we all need some time away- whether it be a few minutes in the bathroom composing ourselves and taking a deep breath or a run to starbucks, etc. You are doing an amazing job! Please, don't ever think that you are a bad mom because you are so far from that. We all have our good and bad days and when you add all the stressors, it's only natural for you to have just a few (!!) more ups and downs than the rest of us.

Reading about Quinn's reflux prompted me to write (sorry I got lost in my psuedo-pep talk above and forgot my real intention). I would strongly recommend trying Quinn in his car seat, vibrating chair, swing (not moving, just him upright), or with you in a carrier/Baby Bjorn-type of carrier for at least 20 to 30 minutes following feedings. Also, in reading your 2 hour saga with him, I questioned that maybe he was just fussy (especially since it sounded like it was around dinner time... could it be that he gets a little colick-y at this time and just wants his pacy/ holding rather than feeding)-- don't get me wrong, I have no doubt that he is hungry, but maybe after he ate ~2 ounces and then fussed, rather than trying to give him more, perhaps trying some more colic-related remedies (white noise via vaccuum, hair dryer, dryer; motion/movement, swing, etc) rather than offering him more food. I'm just thinking how I feel after a "full meal"-- yes, I need to burp, but do I want more food, no, I really just need some time to digest.

I also have another couple of questions... will Quinn let you try and burp him, say after 1/2 an ounce or does he prefer to eat everything all at once. Sometimes, if you can try to burp him after smaller volumes, he might burp a little easier with less spits. Also have you tried him in more of a side-lying feeding position-- rather than upright, try putting him so that when you look down at him drinking, you can look into his ear, rather than looking at his face-- does this make sense?? This way tends to have him not swallow as much air. Also, what types of bottles are you using? If he tends to gulp with feeds, you may try a slow-flow nipple (you could call your NICU and ask to try some)-- again, I'm thinking that maybe he's swallowing a bunch of air and that is causing him some discomfort. Have you tried any formula? Believe me, I know how precious breast milk is and what a major pain pumping is, however... sometimes for whatever reason, a baby just does better with a formula rather than breastmilk.

As always, you know best. I've been wanting to write you and tell you how awesome you are doing and how I am really in absolute awe of all your triumphs. Please know that there are total strangers out there who are cheering for you, crying with you and praying for you and your family for continued successes and for strength to conquer your battles, both big and small. You CAN and WILL do this! Take a look at Kaitlyn to realize how FAR you've come and what great work you do.

If I can be of any other help, please feel free to email me

My best to you and your family,

Sarah Filchak
South Bend, IN

Anna said...

How about making sleep in a papasan-bouncer seat for the first 30-60 minutes after eating? Then move him to the bassinet or wherever else you have him sleep. It's 30-40 degrees, much higher than with an incline...
HANG IN THERE! They outgrow this!!

Mountainmom said...

Liz, you are doing an amazing job with your little ones. God placed them in just the right family with just the right parents---though you may doubt that at any given moment, never doubt that for the big picture. YOU know them best, and only you can advocate for their needs. Keep up the good work.

That said, NO! this is not "normal" parenting and Q's issues are not "normal". A baby his age/size without special health concerns like his would be taking a 4-6oz. bottle with ease, and sleeping for much longer stretches---and allowing you to do the same (the sleep, not the bottle!). But instead, he is uncomfortable and you are understandably exhausted! I'm sure there are many up us who have read for a while who wish we could just beam ourselves to your doorstep to give you some help.

You have been through SO incredibly much--loss of your daughter, financial stress, marriage issues, parenting two little ones with special needs, and more. Then your husband's job does not allow a consistent schedule. Keep your hopes high but your expectations low----all of this would have sent most of us over the proverbial edge long ago. Try to take your days an hour at a time. If Q. is going to cry anyway, can he occasionally do so in a safe place where you are removed from the noise/chaos a little? (a swing or seat in another room with the door closed?) Just long enough for you to care for yourself (like eating, getting a shower, reading your mail, etc.) or spend a few minutes with K? I know you must feel guilty for not being able to help him more, but you are doing all you can. Keep up what you are doing---caring for them to the best of your ability and looking for answers. I pray you will quickly get the responses you need from drs, or otherwise find just the right thing to ease his discomfort and allow a better routine for all of you.

Lori in VA, long-time reader

ThePreemie Experiment said...

Oh boy have I been there Liz! Tyler (35.4 weeker) had more severe reflux than Paige (25.5 weeker) ever had. Along with the reflux he also had severe projectile vomiting.

He was actually happiest when he was eating. He wanted to eat 24/7. He gained so much weight it was scary. So, every time I took him to the doctor I would get "the look".

Tyler slept on me, sitting up in bed, for the first 10 months of his life. I was so exhausted that I used to cry in the middle of the night. I wasn't getting any sleep and my body was so sore. And then I still had to take care of Paige and her medical needs. Ugh.

Finally (he was about 3 months old) I demanded an upper GI. Yes, I got "the look" from the radiologist too. That quickly changed when they started the test and saw that he was refluxing on every swallow. The test was abruptly stopped and they had Tyler immediately sit up. I had to stay at the hospital with him for hours so they could do lung xrays to make sure he didn't aspirate the dye into his lungs.

When the doc suggested Zantac I refused. I have yet to meet a child that tolerated that med, let alone it actually working. I had heard from other parents and they were having great success with Axid. It was our wonder drug. I still had to sleep sitting up with him because of the vomiting (probably due to a weak muscle) but at least he was no longer screaming and wanting to eat 24/7.

I really understand your frustration Liz. I'm not sure about your situation but for me, I was spent. After years of fighting for things for Paige, I had nothing left.

The good news is that he did grow out of it.

Hugs, hugs and more hugs coming your way!!

Stacy (who doesn't appreciate that the security word right now is "lardo". lol

ThePreemie Experiment said...

Oh, I forgot to add, Paige was on Prilosec granules and now that I'm looking at the dosing amounts, was waaaaaay underdosed as well. Ugh.

The Microblogologist said...

My niece spit up a LOT, other than that she was a good and happy baby and we thought it was "normal" for them to spit up all the time, her doc wasn't concerned about it and all. We found out later it wasn't but thankfully she outgrew it and did not suffer any ill effects. Quinn definitely is NOT having normal baby issues as everyone else has said and I am sure you already know, don't let the jerks from before make you self-doubt.

It might be a good idea to dissolve the prilosec into the milk or whatever and put it into a syringe so you can shoot it into more the back of his mouth and maybe prevent losing so much to him spitting it out. I know more about adult dosing, standard is 20mg/day (I am on 40mg/day, I take it all at one time). My doc told me it likely wouldn't make too much difference if I didn't do the wait 30-60 minutes before eating thing since I am on it long-term and I have not noticed a difference either way.

I would be careful about information you find online, it can be very difficult to determine if a source is legit or not. At the same time doctors can be idiots, my sister's proves it (he never heard of MS, didn't even know what it stood for!).

I hope that the specialist can get him on the right mix of meds. I do know that prilosec and other PPIs will not fix everything. They eliminate the acid (if the dose is right) and that can allow the stomach to heal, which if that is the problem can cause the reflux to stop, otherwise it makes the reflux "safe". I've been on prilosec for over a year (with a brief stint of nexium, it sucked) and I still reflux and get gastritis, the key is that I don't have to worry about my esophagus eroding away and the gastritis is much less painful.

You are a great mother, I am amazed that you keep it together as well as you do, even if you do not feel like you are! I truly hope this rough patch is over soon, you have had to fight for everything with these children, even having them was a battle. Hope Brian has a day off coming up so he can give you a break, and perhaps a grandparent or two could come for a visit...

Best,
Karen

Kristin said...

We had LOTS of projectile, we had lots of spit up... receiving blankets in our house are fondly referred to as barf rags..

With the gas pains, what I would put in P's bottle (and Rach's oh so many years ago) was Ovol - its available over the counter, and its 1-2 drops per 8 oz bottle (I dont have any left or I'd get the dosage right off the bottle for you), and it dispels the gas for them - less need to burp, and the screaming was significantly less.

Let me know if you would like to try and you can't find it at your local pharmacy and I can send down a couple of bottles to try.

Kristin

Shannon and Carey said...

OMG Liz. I can't even imagine what you're going through. I feel so weird even posting but just wanted to let you know I heard you. I like what Kristina said. There has got to be SOME way to get you some relief. Man, I felt guilty even getting out of the house sometimes but I needed it. I even went to a Christmas party sick bc I needed a break. (I've even thought os sleeping in my car before!) Can Brian take any leave? Can you get family or someone? You have so many friends. I hope someone comes to your doorstep soon. (I looked at myself one day in the mirror and thought OMG, look at you! This was a really bad day. I felt like I was the biggest loser mom and was just wanting to be out of the house and away from ANYONE) We all have been in low places. Low places are scary. But you seem to get it all out and I hope that helps in some ways.
Hugs your way. And a glass or 2 of wine.
-Shannon in Austin

Anonymous said...

We discovered, a few years after she was better, that our daughter was not "just a fussy baby" as our pediatrician said, but probably had in fact suffered from reflux. For the first 6 - 7 months of her life she never slept for more than 2 hours at night (maybe 1 during the day) and never took more than 2 oz. of breast milk or formula. However, for many months, 2 hours of sleep would have been a dream. The only thing that helped us get a bit of rest was sleeping her on her stomach (suggested by the doctor during daytime naps, but expanded by us to include nighttime). While it is against the modern "rules" it did provide a reflux child with some relief. Bonus points for learning to roll over really early compared to her back-sleeping brother, which made sleeping on her stomach a bit safer. So, I'm sure everyone will jump down my throat, but maybe let him nap on his stomach - laying on his back is the WORST possible position (except maybe a bucket car seat) for reflux.

JS

Jennifer said...

There are 20 comments here, but I am unable to read them all, so this could be repeat info... are you able to completely mash the tablet into powder? If so can you mix it with milk and put it in a syringe? WAY easier to give a baby meds than with a spoon. My little one had reflux and was given Zantac 3 times a day and the only way to do it was with a syringe since he started at 8 weeks.

Also, stop focusing on what's normal and how you SHOULD feel because what you are feeling now is what you should feel. For one, the pregnancy hormones are still with you and emotions will run high no matter what. But, this is your normal. I don't think there is a "normal" that we can all try to achieve. What we have is what we have and if there is anything that is normal, it's your emotions about what you are dealing with. You have kids, you will get frustrated and often. All you can do is get through it and you love your kids no matter what, that is what matters most.

Susanna said...

I was finally catching up with PreemieBlogMoms and read about your reflux problems. We've been there, for sure. It is REALLY hard. Especially when you go through all that and then talk to a friend who says, "I wish they could just stay this age forever!"

Asher is 8 months adjusted age (11 months real age) and 11.5 lbs. and on Prevacid, in a liquid suspension we get at Children's. We also use Carafate as needed, which seems to help, as it coats the esophagus and gives it a chance to heal. I wonder why Carafate isn't mentioned more in the world of reflux and babies?? I emailed our pediatrician with that question today. Things should definitely get better with the right meds and the right dosage. Have some wine and go easy on yourself til you get there.

Erika said...

I've emailed you before about this, but I strongly suggest cranio-sacral therapy...it solved my daughter's issues literally the same day, and we were able to take her off meds within the week. It's worth a try.

Shannon said...

First of all- who put it in your head that you are a bad mom because hearing the pained cries of your baby makes you nuts? For goodness sake, it makes you human!
I have a theory for you. My son has special needs, pre-term (not micro) blah, blah, blah. I could handle everything they threw at me. Yeah I reacted emotionally but I HANDLED IT. With a smile (usually), determination and love. I had to; his situation was/is dangerous. I had no choice but to stay "even" and unaffected because I was in survival mode. Fast forward 3 years I had a 37 weeker who screamed. For 18 weeks she cried every moment that she was awake and slept for no more than 30 minutes at a time. Not being in survival mode with her, I wanted to run screaming from the house every time she cried. I think that I thought it would be easier and it was different and harder in so many ways. It took me a while to realize that I wasn’t a bad mom for feeling frustration with my “typical” child.
This is a really long post to say that just because there were fewer traumas associated with your son doesn't make him easy. Just because you know people who face big challenges doesn't mean this isn't challenging. Get away, as much as you need to. AND DON’T FEEL BAD ABOUT IT! Hang in there!

Jamie said...

More than enough people have left their two cents, I just wanted to say THANK YOU, THANK YOU, THANK YOU!!! Your post sounds like a re-occurring episode at our home - the range of emotions, dealing with with two kids (I have 28 weeker twins - one has reflux, the other I feel is neglected becuase he doesn't...), the constant fire drill induced by a screaming baby (do they ever just cry?)... At any rate, you have instilled a sense of normalcy in me, at least until my next bought with reflux! You are not alone, hang in there, & hopefully in a year - reflux will be a distant blur from the past!

Eriness said...

Don't know if this will help but my son had th same issues and later figured out it was a dairy allergy and I breastfed for a year. He is 2 and on lactaid milk. But what we did is hadhim sleep on his tummy. This helped for some reason and he was a huge spitter upper. The doctor thought this might work as soon as he could lift his head. He started sleeping more and it saved my sanity. We had a monitor in his crib called angel care which detected movement and an alarm goes off if there is no movement which helped with him sleeping on his tummy and SIDS. That worked for us. I am sorry about Quinn, but this won't last forever at least. I know that does not help, any mother (and you are a good one) would feel like you after all this!

Anonymous said...

Liz, I have been reading your blog for a long time, and have emailed with you in the past about my child's feeding problems. I just wanted to say that I feel so bad for you. Feeding problems/GERD are HELL for baby/child and mother. I'm sorry that you received such harsh comments in your earlier blogs too. You are suffering, and you have a right to express your pain.

Having felt despair over my child, I feel what you are going through. I hope you will monitor yourself for signs of depression, which would be easy to experience with the long-term stress you have been under. Stop telling yourself you suck!!! You are working your butt off to care for your kids!

You should also know that "normal" fullterm babies with colic or GERD or milk intolerence can be very stressful too. But it does get better. If I were you, I would try Quinn on a milk free diet, and see if he does better. Odds are, a few months from now your lives will feel much easier. Keep up the good work!
Christina

Mir said...

I had my first episode of MS this summer, and lost an exorbitant amount of weight. I'm trying currently to maintain what I have, but since my infant is milk intolerant as well, I had a heck of a time too. What's currently working for me is what I like to call the "toddler diet." Anything you'd feed a toddler, and as often as you'd feed one, eat yourself. So, for lunch, I just had PB&J, carrots, and chips. Yesterday was tuna and tomato. Yum!

Snack will be gorp and with dinner, I have Propel for the extra vitamins and salts.

One more thing: Catherine just started weaning this week, and we put her on soy. She has done great with it! I tried having a bowl of cereal last week and she spit up twice after nursing, and when she was younger she projectile vomited with regular formula, so we went straight to soy. It's been wonderful. Maybe you could try soy before bed and see how Quinn does. I think the sleep is more important to how his tummy got full to begin with!

Christy said...

Liz,

I follow your blog, but don't often post!

I just wanted you to know I feel your pain and you aren't the only one to have nights/days, etc like that!

My husband is a cop, and he works nights.. I work days.. So, the time we actually spend parenting together-- is minimal. When you have 2 little ones that require all of your attention-- it can strain you!

Hang in there! Vent all you need to.. I've had days where I have to walk out to the front porch while everyone is screaming and yelling and throwing crap-- and just sit on my front porch to cry for a second, gather myself, then come back in..

: )

Kyrsten said...

Came over from the Preemie Experiment... Wow, do I understand what you're going through!!!

Right now, 2-year old former 28-weeker, surviving twin, is in the tub-- and my 1-month old 37-weeker is napping in the bouncy chair-- where he's been all day because of what I think is reflux.

It's an oxymoron: I'm so glad my (surprise) baby son is doing so well, that I got to take him home, that I can breastfeed, yaddayaddayadda, *but* there are days when between the two of them, I don't know which end is up!

Hang in there; you're not alone in the madness. :)~

Anonymous said...

Hi Liz - I think others have suggested this but I'll also put in a plug for babywearing. I wore my daughter in the Moby Wrap, the Bjorn, or the Ergo for many hours each day when she was little, and still wear her most days at almost 20 months. A good carrier is a lifesaver! Hugs and good luck. This too shall pass.

liz.mccarthy said...

just returned from GI on Friday, will do an update post (hopefully tonight after the kids are asleep IF Mr Q goes to sleep!).

Anonymous said...

Liz:
I am so glad you wrote this post. As the mom of a premie with severe reflux and BPD on home oxygen, I feel your pain. I am on the brink of madness with my son's reflux and equally frustrated with the GI and the fact that he was in reglan/erythro and prevacid and nothing works. I could have written the post. It is amazing how similar the sypmtoms are. He is my only child so I don't even know how you do it with two kids. You are a saint as one has to expereicne a baby with reflux to understand the anguish and helplessless that comee with this disorder.
Hugs
kathy

Anonymous said...

I am sooo sorry. I had the full termer first and then the micropreemie second. By the time, we escaped the NICU, I thought I was going to completely lose my mind and at that point, my son, vomitted every feeding. After a month home and virtually every medicine, I absolutely hated to do this, but I switched him to Similac Neosure with oatmeal. The thickened feedings cut the vommiting in half. My freezer had 5 months of day and night pumpings. OHHHH.. Anyways, it wasn't until 18 months later, that I finally convinced the Ped and GI that he was really allergic to milk. We took him off dairy and there is no more vommiting. I, too, would not dare think of parting with the breast milk, but you have to sleep to survive. So, if you can't get the meds, perhaps you try a few cans of lactose free formula. Two years later, I am actually optimistic that I may once again be human.

Anonymous said...

I'm sorry you're going thru this. Hang in there. My DD is 17 months old and she's been on Prevacid since 4 months old. We tried Zantac and Axid but Prevacid worked the best. She had lots of projectile vomiting and hardly slept when she was at the height of her reflux. She was diagnosed with MSPI and at 1 yr was diagnosed w. milk and egg allergies. I was breastfeeding and pumping but she was not gaining on my breastmilk. I had her on hypoallergenic formula by 4 months and she thrived on that. My milk supply was so low. Anyway, so Similac Alimentum *the liquid kind, Prevacid, gas drops, Tucker Sling, baby Papasan chair and lots of prayers are the things that helped me. My daughter's reflux affected me and my husband so much to the point we almost divorced. We were not prepared to deal with it. I felt like I never even got to enjoy my baby. Feeding her was so stressful! I realized later on (after going on Marci-kids) that she was severely underdosed. It's so important to treat reflux correctly. My daughter ended up having bottle and feeding aversions. She was not chewing and was just eating mostly baby food(pureed) at 15 months. She is doing much better thank God. She sees a feeding therapist (SLP) and a nutritionist through the Early Intervention program. I feel like all the side effects of reflux could have been prevented if only she had been on the proper dose.

Hugs!