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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More Coffee

I finally found a job, hooray!  Today is my third day and I’m exhausted.   Crawled back into bed, hit snooze, skipped breakfast, and added a caffeine shot to my coffee.  And this is after 11 hours of sleep.

I Survived 

I’m not suffering as much as expected after yesterday’s exertions.   This morning it was very, very difficult to get up, & I did have a migraine starting. But the excedrine helped.  Today was equally crazy & busy.  The baby was fussy & I carried her around in a pouch for an hour this morning.  Helped my cousins move boxes this afternoon & I am feeling it.  The joints in my knees, hips, hands, & feet are achey.   My arms burn like a marathon & my back aches in its usual way.

I’ve been sticking with the TED, looking into the allowance of herbs & spices.  But I don’t want to change anything until after the freedom swim since I’ve been feeling & doing better.  Hopefully this will continue & I’ll easily complete the swim.  I’m praying I’ve found the cure & this isn’t just a short remission.  I’m 5 days migraine free, so my next one isn’t due until after the swim (every 7ish days).

Dry Food 

My only problem with TED is dry turkey.  Its not really dry, all turkey & chicken are dry to me, I have to put something on it, but I don’t have Sjrogens.  But I’m on TED, so what can I put on it? One lady posted that she uses olive oil, I tried it, ewww.  Salt helps some.  I’ve been putting honey on it, which is a bummer cause I thought this would be a good chance to withdraw from sugar & carbs.   When I was pregnant with my now 11 week old baby, I was so sick & heartburn I couldn’t drink plain water, hated chicken, ate a lot of sweat carbs & tea cause it stayed down the easiest & gave me the least heartburm.

Good Day Done

Had a very busy, productive day.   Not sure where i got the energy from.  Is it the Naltroxen?  Beach & sun? Diet?  Or is it one of those fluke days?  I got up around 9, went to Target & bought coffee, dropped the baby off at grandma’s, picked up a washer, went grocery shopping, & threw in a load of laundry & dishes.   I’m exhausted, wonder how I’ll feel tomorrow. My arms are so tired & sore now!

Pick up the stuff to try the TED diet again, I tried not to eat much that wasn’t on it, but I ran out of turkey & money.  Now I have the proper supplies to follow the rules for 2 weeks.

Failure to Thrive

I am, literally, ready to cry.  Baby has a “Failure to thrive”, not gaining enough weight.  She isn’t eating enough.  But what’s really breaking my heart is completely discontinuing breastfeeding.  I still nurse her at night, its so much easier.  But the thought is that she’s falling asleep & not eating.  I think she looks great, she’s happy, pudgy, crazy cute!  But her weight gain is too slow & she is gradually dropping on the growth charts, both height & weight.  I wish I knew how my first progressed, that pediatrician was a lot more relaxed, as long as the baby looked well & was happy. Only my first wasn’t a happy baby.

Now, the question is, do I continue to TED diet for me?  I was able to determine that pork is a problem for the baby.  Determining that much and possibility of finding more makes me want to comtinue.  Do I try to go back to pumping?  Do I just let it go in the hopes of better medication for me.  Is it my medicine slowing her down?

Half Baked

If my posts seem incomplete, that’s because they are.   I tend to forget what I want to say or share.  Or I save it to finish it & forget, then find it next time I go to write & wonder what I was saying.   Also, I like to keep it short for other Fibro Friends, assuming that they, like me, have the attention span of a fly. 

I updated my beach post to explain that 2 days in the sun & sand wore me out instead of recharging.  I spent today on the couch begging the baby to sleep.  I really neeed help, but none was available.   My family doesn’t understand me/Fibro & they are busy with their own lives.   Church comes first, mu husband only work til 3.  While it seems like an eternity, by time I can get someone here, he is almost home.