Feeding Issues

First, work is so hard, it doesn’t matter the job. Fibromyalgia & migraines, I miss sleeping 12 hours.

Now, the purpose of this post is to follow the babies feeding issues.   I didn’t know such a thing existed, and the more I research, the less I find.  Hopefully, other parents struggling will find this blog too.  And I’ll update it as I learn more. Lets go back to the beginning, 3 months ago.

I knew there was a problem day 1.  Baby was such a noisy eater!  She would click when she sucked, gulp air, then wheeze to catch her breath.   Later we would learn this is called ‘disorganized.’  Add to this the gagging & excessive spitting up, I knew she had reflux.  Fast Forward 4 days, Saturday, my milk has come in, but baby had only 1 peed diaper, very bad.  I rushed out & bought formula, Enfamil Newborn.  Sunday she was lethargic & excessively sleepy.  At our newborn visit on Monday, she had lost 1 pound, almost 20%, which is hospital worthy.  She was born at 90% on the growth charts. We switched her to a hydrolyzed formula, I quit all dairy, went to a lactation expert, but things didn’t improve.  I even went on this extreme TED allergen diet!

By the time we went to WIC at 4 weeks, I had almost given up on breastfeeding, when we heard about tongue tie.  At 6 weeks we saw the ENT & he diagnosed a very mild tongue tie.  There was 50:50 chance that fixing the tongue tie would help breastfeeding, but help with nothing else because it was so mild.  Breastfeeding was so important to us that we decided to do the surgery. 30 seconds that felt like 30 minutes later, it was done.

At our 2 month visit, baby had slid further down the growth charts.  Doc tested for digestive problems, check back in 2 weeks.  By this time I’m only breastfeeding at night, she still clicks her tongue, though not as much.  We aren’t really concerned cause she appears so healthy, happy, cute & chunky.   But doc is concerned cause she still eats like a newborn, 2 ounces every 2 hours.

2 weeks later and baby is down to 10%, now I’m worried.  I ask about her chewing her tongue cause she always chews it on the right, turns it to the right, etc.  Switch to another formula, $60 a can for Elicare!  We get referral to a SLP feeding specialist & a GI.  GI initially says she’s fine because if you measure weight by height, its perfect.  Check back in 2 weeks.  The SLP diagnosed disorganised feeding, but theres more because she just isn’t getting milk into her mouth & down, referral for an OPMS & a nutritionist.

So, the treatment for disorganised feeding?  She gets 3 sucks on the bottle then we tilt it down so she can’t get milk, wait for her to swallow & breath, repeat.  This seems to be a huge help.  I don’t know what you would do if you were bottle feeding. 

I’ve been writing this article for a week and its still not finished. But I’m posting to share what i have so far incase I never finish it.  With hubby sick I’ve been up with the baby, and up for work, and up homeschooling.   I’m taking the baby to spend the night with grandma tomorrow.

UPDATE 8/9, now 4 months old.  Her 2 week checkup with GI puts baby below the growth charts for both height & weight, her height/weight growth has plateaued, & shes gaining around 5 oz a day.  Ideally she should gain 25 oz a day.  We have to bump up the calories in her formula by mixing it thicker, specifically at 24 calories instead of 20 by putting an extra scoop into 8 ounces. The checkup today, another 2 weeks have passed, & she is back on the charts, her height/weight has started growing again.  Specifically, her height is growing as needed, weight a little sluggish.  She is gaining 20 ounces, a little less than needed but much better!  She has been eating/sleeping a lot, going through growth spurts every couple of days catching up.  Stool test showed protein, no blood, not sure what that means when she is on Elicare, which she will stay on for the first year.

In our way to All Childrens for the Echocardiogram to see if she inherited daddy’s IHSS, pray she hasnt.   If she has, then she’ll need even more calories.

The feeding therapist is thrilled with her progress.  And so are we.  She seems to be eating more now that its easierm. At the same time she’s hit the age where she’d rather play than eat.


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