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beth

how's the reflux situation?
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My Personal Blog Knot Bio Nest Bio
Andrew Ryan - born at 26w2d, 2 lb 3 oz, Dec 2008 Elliott William - born at 35w4d, 7 lb 1 oz, May 2011

Re: beth

  • I think it's getting better, but who the hell knows, right?  Gah.

    She seems happier - she's sleeping better - she's eating fine and gaining weight.  And thickening has made a big difference in the amount of spit up on a regular basis.

    But.

    She is still projectile barfing 1-2x per week and it is baffling to me!  Our pedi here is really on top of reflux it seems and he acts like the projectile should be stopping (still spit up of course, but no projectile) unless something else is going on since we have her on hypoallergenic formula, meds and are doing things to combat her reflux.  Plus, the projectile barf is totally random.  It's always out of nowhere, not like she overate or was bouncing around or anything else I could attribute it to.

    We have her 2m appointment on Tuesday so I'll bring it up then - that she's still projectiling 1-2x per week and see what he says.  He said before that if she was still doing it (but I'm not sure how much - if 1-2x per week is enough of a reduction and nothing to worry about?) that we might do an u/s on her and potentially some type of swallow study.  We'll see though. 

    Thanks for asking!

    Jackson Henry [10*1*06] & Scarlett Maeve [9*16*10]
  • OMG that sounds just like Andrew.  Not cool.  Sorry. 

    Improvement is good, but it's frustrating when you never really feel like you fully have the situation under control.  LIke you are chasing this moving target. 

    FWIW Andrew did projectile even with treated reflux, generally due to gagging and/or near aspiration I think.  The SS helped understand that (swallowing disorder and penetration of his airway with swallows) but really the result was them experimenting with thickened liquid and nipple flow.  Granted, you'd want to know if they were aspirating, of course.  

    He also puked massive amounts when his reflux was treated up until he ate again. That's when we saw the GI doctor and he was diagnosed w/ delayed gastric emptying.  He also spit up  major amounts if he had to burp, which was a lot, and worse with teething (of course she is too young.)

    Anyways, I hope that things get better.  :/  Just some thoughts on why Andrew still did that despite having his reflux "controlled". (controlled...ha!)

    Keep us posted!

     

    image
    My Personal Blog Knot Bio Nest Bio
    Andrew Ryan - born at 26w2d, 2 lb 3 oz, Dec 2008 Elliott William - born at 35w4d, 7 lb 1 oz, May 2011
  • I'll definitely update with what the doctor says.  I'm curious if he'll say it's fine and expected or we need to do something.  Since she's gaining weight and seems normal otherwise, I won't be surprised if he says it's fine.  It seems like a lot of pediatrics relies on the child gaining weight/acting mostly normal when saying everything is fine, haha.

    And you are so right about chasing a moving target - I told Jeff the other day, just when I think I've got her and the reflux under control, she throws me for a loop and I'm left wondering WTF is going on.

    Thanks for the info - I've wondered what the other causes besides "reflux" are for these symptoms.  It seems like reflux is common on the baby boards, but the step beyond with more symptoms is harder to find information on.  I think there's someone on 0-3m whose daughter was dx'd with the delayed gastric emptying recently.

    It's funny - on the one hand I felt prepared to deal with this again, and I did recognize the signs, but I still feel like I'm flying blind frequently.

    And controlled reflux is definitely the oxymoron of all oxymorons.  :)

    Jackson Henry [10*1*06] & Scarlett Maeve [9*16*10]
  • for sure

    FWIW Andrew never had a weight gain problem (no idea how he didn't, but I"m glad he didn't) but was just SO MISERABLE....and we were concerned about the gagging/choking/coughing as well. 

    I know you'll talk to your pedi and follow your gut!

     

    image
    My Personal Blog Knot Bio Nest Bio
    Andrew Ryan - born at 26w2d, 2 lb 3 oz, Dec 2008 Elliott William - born at 35w4d, 7 lb 1 oz, May 2011
  • p.s. I won't lie - seeing you have to do this AGAIN..oh man...I really hope I don't have to again :/
    image
    My Personal Blog Knot Bio Nest Bio
    Andrew Ryan - born at 26w2d, 2 lb 3 oz, Dec 2008 Elliott William - born at 35w4d, 7 lb 1 oz, May 2011
  • It seems worse, too.  LOL.  Or my tolerance for being barfed on hit it's limit with Jackson...

    Oh and sometimes I do think Scarlett is miserable.  I'm just never sure because I wonder if it's just gas.  Or reflux.  Or any number of things.  Or lack of sleep because of all of the above.  She slept great last night and was mostly not fussy today, though - so maybe it is/was a sleep thing.  Jackson was just a much happier baby despite his reflux, or I'm blocking out the bad.

    On top of all that, it's just harder because Jackson brings home mutant germs from school and she has had a perpetual cold, which I know aggravates reflux.

    Sometimes I think people think I'm crazy because I'm always looking for a "cure" to these issues and that some babies are just fussy, but it's not that I'm doing it for me (although it will be better for me), it's that I HATE her being so sad if there's something I can do about it.  I know I don't have to tell you how that is!

    Jackson Henry [10*1*06] & Scarlett Maeve [9*16*10]
  • Oh, I know.  I hate it when people say "some babies are just fussy".  Maybe true.   Maybe that doesn't mean I"m going to let Andrew just sit here and be a miserable refluxing mess either... :)  For us there's always been a very good reason.  Granted, he's so easy going when he's not feeling bad. 

    Oh, colds are the worst. Andrew didn't have his first one until 1 year and man, he puked for 4 solid days. he just kept gagging and gagging and gagging on drainage.  bah.  

    Also, we did find once things were sort of "controlled" (there is that word again) Andrew was *so tired*. That's when we moved his bed back, and back, and back, and he slept 6-6.  He was so so way much better after that. I think. like you said, with reflux, it was so easy for him to get over tired before that. 

    YIkes!

     

    image
    My Personal Blog Knot Bio Nest Bio
    Andrew Ryan - born at 26w2d, 2 lb 3 oz, Dec 2008 Elliott William - born at 35w4d, 7 lb 1 oz, May 2011
  • Exactly!  Like, I know she has reflux and I know it's not just plain fussiness so I'm not going to make the poor thing suffer.  Argh.

    Scarlett's vomit while in the throes of a cold is just foul.  I'll leave it at that.  The drainage is not her friend.

    I do think her getting a lot of sleep makes a major difference, and I've always been on the lots of sleep is very important bandwagon.  For Jackson, it always was - overtired babies are miserable!  That was a huge thing I figured out with him.  She slept last night from 8:30-6:45, and if she keeps that up, we're going to move her bedtime earlier.  I put her down around 8 tonight, so we'll see how it goes.

    Jackson Henry [10*1*06] & Scarlett Maeve [9*16*10]
  • oh, that's great!  Yay for sleep.  I'm with you. 

    Neither Andrew or I can funcxtion without sleep. He also eats much worse and gags more when he's tired.  He doesn't really gag anymore but when little he just couldn't handle the eating and reflux and coordinate it when tired. His mucles would just tired out and it wasn't good.  He doesn't handle being tired well and never has.  when he's rested, which is most of the time, he is so easy going!

    ponder this: Can you imagine life before reflux meds? :::shudders:::

    image
    My Personal Blog Knot Bio Nest Bio
    Andrew Ryan - born at 26w2d, 2 lb 3 oz, Dec 2008 Elliott William - born at 35w4d, 7 lb 1 oz, May 2011
  • for serious.

    Or before it was regularly diagnosed.  Just ask my mother.  After being around my babies, she is convinced that I had reflux and a milk/soy sensitivity but I was just dx'd with colic.  Poor her!

    Sleep seriously makes everything better.  I can just tell with both my kids when they need more sleep, and sometimes I think people think I'm nuts about their sleep but whatever.  We are all much happier when well-rested.  I think being overtired really does carry over into a lot of other areas for young kids (whether eating, behavior, whatever).  

    Jackson Henry [10*1*06] & Scarlett Maeve [9*16*10]
  • I agree. I was annoyed the other day - we were at the zoo and I told my mom and my grandma  "well, I just need to leave by about 12" (12 is Andrew's nap time AND he had a sinus infection.)

    My grandma asked why and I told her it was his nap time (his only nap).

    She turned to my mom and said "you can tell it's her first kid, can't you?" well hmph. 

    I bend the naps some days, but as a general rule, I want him napping at 12 or 12:30, preferably in his bed.  I hope that I can do this with #2 as well. I know it won't always happen but hopefully most of the time. 

    The same grandma also said that my mom screamed every day as an infant for hours. I often wonder if she probably had reflux.  They said "it's just how she was" and I think "OMG I would have figured out why" but then, back then, maybe that's how it was. Yikes!


     

    image
    My Personal Blog Knot Bio Nest Bio
    Andrew Ryan - born at 26w2d, 2 lb 3 oz, Dec 2008 Elliott William - born at 35w4d, 7 lb 1 oz, May 2011
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