Feb 1
Happy 6 months baby!

Jaylen turned 6 months old on Friday.  I haven’t posted much in the last several weeks.  Living with a baby with severe GERD (Gastroesophageal Reflux Disease) is NOT an easy task.  I snap photos and things of Jaylen when she’s happy (because who wants a baby book full of crying faces?) but I don’t want to gloss over how hard it’s been at all, so let me give you a little look into our day to day life…I’d like to start usually the night before, because to appreciate the situation fully, our “day” doesn’t really start at 6am like most people.  For the past 2-3 months, at 6am I’m usually finally getting some sleep, so we don’t actually get up for the day until about 9.  [Please excuse me while I get some more coffee… ok I’m back.]

Our night before is usually one long screaming/crying fest.  We tried putting Jaylen down for bed at about 7pm-8pm.  That usually results in a 15-20 minute nap and she’s up again by 8:30.  Then she cries and fusses and screams and chokes and coughs from all that screaming and sometimes pukes because she’s coughed so hard she’s gagged herself.

After walking with her and bouncing and standing (you can NOT sit down and hold her) and swinging and shushing her for a few hours and possibly giving her a bottle which she doesn’t always take at this point in time, she usually falls asleep about midnight-1am.  But that doesn’t last long.  An hour or two, with periodic awake moments that include crying/fussing.  She’s usually back up and screaming by 2, most nights she wakes from a dead sleep into a straight scream.  And nothing will get her back to sleep.  If you catch her before 3am, you can give her a bottle and that usually gets her back to sleep.  I belive she’s been overeating for a long time because it helps temporarily soothe the Reflux.  I say before 3am because up until last week, she had been on Prevacid for the Reflux which is a PPI (Proton Pump Inhibitor) medication.  In order for that to work, it had to be given on an empty stomach, and how do you get an infant that eats every 2-3 hours to have an empty stomach?  Yu don’t feed her for 4 hours!  So not only do you have an already uncomfortable baby crying because she’s in pain, try and withold the one thing that has soothed her pain and see what you get.  So we’ve had a lot of long nights with a screaming baby.

So after suffering through the night, getting next to no sleep, getting up at 6am to give her the Prevacid and then waiting 30 minutes to give her a bottle (due to the way a PPI works), we both finally crash and usually get about 3 hours of sleep.  So that is why for the past couple months we’re not “up” until 9 or 10 am.  But now you know better!  We’ve really been up all night!

Then the real fun starts.  I call that first 2 hours of my new day the “Golden Hours” because for the first time all night/day, Jaylen is happy.  She usually watches her DVD (Baby Einstein) for a while or plays in her ExerSaucer or her Bouncy Horse (thanks Pammaw!).  But as the day spans on, she gets progressively fussier.  I honestly believe it is because the dose of PPI that the doctors I keep fighting with was TOO LOW.  Yes, I understand that there’s not much main-stream research done on PPI’s in infants under the age of 1 yr, but that is where Marci-Kids comes in.  MARCI-Kids is the Midwest Acid Reflux Childrens Institute.  So of COURSE they’re going to have a lot of research.  Its just such a shame that since the research is fairly recent (last 10 years or so), not very many doctrs either A) know about it, or B) seem to take it seriously. [Case in point will follow after our daily recap here.]

So our day goes on much the same.  Fussy, can’t be put down, crying when held, arching of the back, thrashing, screaming, NO NAPPING…. All. Day.  Long.  It has been very tiring.  It has caused a lot of stress in the household.  It has taken a major financial toll on us.  All those doctor visits and trips to the Chiro and going to Children’s Dayton for testing have cost a small fortune.  Like I mentioned above I have little time to myself, so I feel ragged and worn down, and very emotionally depressed.  My sweet angel is sick and I can’t seem to help her.  The house is a wreck and it’s all I can do to just muster through the day with minimal effort put into anything else.  If you play the video below, you get a sense of what I deal with for the better part of most days.

So you can see why I haven’t updated the site much.  I haven’t gotten around to doing a LOT of things I had so wanted to do.  I designed a birth announcement for her but never got a chance to send them out (I didn’t get to print them and address them and send them).  I wanted to have a Family Photo shot of us professinally somewhere, and to date that hasn’t been done.  I wanted to get Christmas Cards sent out, again, not done.  I have a baby book for Jaylen that hasn’t been touched yet, nor has her baby scrap book that I wanted to make for her first year of life.  I spend so much time trying to keep her happy that I have little time to do the “fun” stuff of bringing up baby.  So for those things, I am very sorry.

HOWEVER! Onto a more positive note! Over the last 2 weeks, Jaylen has switched PPI medications and under the advisory of the MARCI-Kids folks, we’ve upped her doseage and have been giving her a different medcation, and amazingly she has started to sleep through the night again and take hour+ naps several times a day.  Now I’m knocking on wood as I type this because I don’t want to Jinx myself, but hopefully this is a light at the end of the tunnel!  We still have a lot of fussy times, especially when it’s time to go down for naps or go down for the night, but she seems more rested and happier throught the day.  She plays by herself more and is just generally a happier baby.  Which is good, because I think I see a tooth getting ready to break through!!!!

So lets recap a few things that we’ve done in the past 6 months.

Learning to sit up (still practicing):

My first snowstorm:

First time in a shopping cart seat:

Learning to eat solids:

My first Christmas (I love Brother!)

Learned to roll over:

And I’m also working on learning to CRAWL!!!! Stay tuned for photos of that!  As always, you can click the Photo Gallery link from the top of the page for more pics.  And for more videos, follow the link below:

Stoneburner Videos on YouTube

Thanks for reading!

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6 Responses

  1. Samantha Says:

    Poor things…all of you. I can’t imagine the stress it been but at least you’re finding the high points and noting them too. No small feat! You have a beautiful fam Rams!

  2. Annette Says:

    Hi! I found your website while researching the Marci-kids website. That, unfortunately, means I too have a baby with GERD. This is our third with it….the first was not too bad, but our second had a terrible case. I hope things are going better for you with new meds and such…we’re currently doing Prevacid, and I bumped up the dose last night according to marci-kids recs. Just wanted to let you know, you’re not alone! Watching your video broke my heart!!! Feel free to email me if you would like to chat!

  3. Ramsey Says:

    Hi Annette, Sorry to hear about your little GERDling too! I wish more doctors would realize the good that Marci-Kids is doing!!! We’ve switched to using Prilosec OTC using the Buffer Babies available from Marci-Kids and we’ve seen such a drastic difference — she sleeps thru the night again, she takes 1-2hr naps a couple times a day, and is overall a much happier baby! I hope the Prevacid works for you!!

  4. Ramsey Says:

    Hey Sam, thanks for the comments! I think it’s better to look on the positive side of things, but sometimes I forget that I tend to do that so much that some people wonder what the heck I’m talking bout when I say “it’s been a rough day here” or whatever. It’s sad because I feel like I can’t wait until I can look back on these days and little ones grow up way too fast, so I feel like I’m already cheated on these precious times.

  5. T. Bursey Says:

    After reading your site I felt a little hopeful for myself and my son who was born a preemie and spent his first weeks in NICU and my days sound very much like yours. I thought I was a bad mom not getting up til noon and doing all the things “they” tell you not to do…just to make him happy and get him to sleep. Now I know he has reflux. I took him to dr they gave him Prevacid it made him worse. He is on Nutramigen and I think it is the lactose in the Prevacid…I am still battling it all…it is hard work. God Bless.

  6. Liz Says:

    I saw your post as I was looking up Marci kids. I know its been a while since you posted, so I hope things are going much better for you. I have a 10 month, my only, with AR. It took until he was 4 months and choking on it to get a diagnosis and a Rx fir Zantec. No one in my family has ever dealt with AR. My Gramdma kept telling me he was just colicky and spoiled, my mom wanted to feed him corn syrup bc she said he was constipated (even with runny breastmilk poops), and none of my friends had kids. It was so isolating (both our families are out of town and ran the other way when he was screaming…which was all the time). I finally got our doc to give him Prevacid and it seemed to help some times and not others. Just recently found out how to space doses correctly (you think the dr or pharmacist would tell you) and night time sleep is getting better.

    I guess why I’m writing is to say that as unfortunate ad it is, I’m glad I’m not alone. I’m hoping that my son can finally find some comfort and just be a happy baby.