DS FTT-Might be hospitalized if he doesn't gain by Monday

[Dynomite&Destiny]

This was supposed to be a "long story short" kinda post. Sorry.

DS has had somes issues since birth, mainly involving weight gain, spitting up and mucousy stools. He was born 7 lbs 2 oz, got down to 6 lbs 8 oz before starting to gain, and is currently weighing in at 10 lbs 5.5 oz at almost 17 weeks. Despite the fact that he nurses constantly. I hear him swallow and he pees plenty (poops every 1-3 days).

I've been working my butt off to resolve all of this. DD had similar weight gain issues and mucousy stools (she also had blood in her stool), and, after being diagnosed FTT at 4 months, we were told she had multiple food intolerances (not just the cow's milk protien issue we'd been dealing with since 6 weeks). The pedi GI ran a bunch of tests to rule everything else out, including a Neocate trial, while I cut top offenders out of my diet and pumped. DD finally gained on the Neocate (after losing about 4 oz from 3-4 months. Iirc, she was 10 lbs 1 oz at 4 months, 7 lbs 13 oz at birth), and we went back to BFing, supplementing about a bottle a day with the Neocate until she had a fair diet of solids because my supply had suffered during the Neocate trial. She continued to gain, and I believe she made it to the 90% by 18 months.

All that is to say that, when DS started showing similar symptoms, I figured all this was old hat, and we'd take care of it no problem. No constant dr visits and thousands of tests this time. :-/ I wish. After 6.5 weeks on some manner or another of restricted diet (me, not him), including 3.5 weeks on 2 different Total Elimination diets, he still refused to gain weight in a reasonable manner and continued to have mucousy stools. The spit up did resolve, which I initially thought he just grew out of, but I tried going back on a normal diet, and the spit up came back the next day.

So we tried supplementing with a bottle of my sister's milk, and he gained 2.5 ounces in one day. I figured, in addition to the food sensitivities, we must be having some sort of transfer issue or supply issue, so I've been working my butt off to resolve both, pumping while he's nursing to feed him later and taking fenugreek and drinking that nasty tea. He seemed to be starting to gain a little better, but I wanted to see an LC to see if she could help, because I can only pump a few ounces a day.

Well, we went to visit the "Lactation nurse" covered by our insurance yesterday. She asked me a few general questions about our situation while DS slept, and weighed him, and then she was on the phone with DS's ped, discussing hospitalization! Apparently thry played some phone tag regarding the issue that required DS and I to sit and wait for 3.5 hours. The nurse finally had us see the head ped there, who sent us home with strict instructions to give DS 2 oz of formula every 3 hours (I'm "allowed" to continue BFing), do daily weight checks (take him in if he loses) and see our ped first thing Monday morning. Which is all better than a weekend in a hospital and a possible NG tube, IMO.

Besides the weight gain, spitting up and mucousy stools issue, he's a happy, healthy almost 4 month old, developing fine physically and mentally. If his weight is such an issue, then there's underlying problem, right? We can supplement with formula to force weight on him if that's what he needs to be healthy in the short term, but in the long term, there's gotta be a reason he's not gaining nursing all day. There's gotta be smethinng we can fix so that he can go back to BFing only, right?

Thanks for reading my novella. Any input would be greatly appreciated.

[D_McG]

have they done pre/post nursing weights to check how much he's transferring?

[Megan73]

Double check my math, but when I plug his stats into the infant growth calculator at Kellymom.com I get a weight gain of 3.9 ounces a week which is low but not worthy of hospitalization in a baby who looks good - he should be gaining 5 to 7 ounces a week.
I would suspect low supply or a transfer problem (which by now would reduce supply). I know from experience that swallowing and plenty of wets mean that baby is drinking and isn't dehydrated, respectively, but don't necessarily mean he's getting enough to grow well.
If I were you, I would rent a baby scale to do test feeds to see exactly how much he's transfering and to monitor weight closely, eliminate bottles and supplement at the breast with a SNS (an ounce after four feeds is much better than one four-ounce bottle), pump after feeds and try domperidone - really the gold standard for galactogogues.
Ignore the Monday deadline. Calibrate the supplement for appropriate growth - I'd suggest at the high end so he can catch up a bit - then monitor weight gain closely so you know when you can ease back.
Honestly, I think you'll probably be able to boost your supply and get rid of the supplements.
Just my 2 cents...
Good luck, mama!

[Natanya]

I'm thinking a low supply issue or your milk doesn't have enough calories. What about taking extra prenatal vitamins and extra DHA daily to increase the calories.
As for low supply....sometimes fenugreek can cause mucussy stool and other issues. You may want to switch to another method of glacatogue. I'm about to try domperidone...I'll let you know how it works.
I would also say don't worry about the monday deadline.
Hope things get better!

[Dynomite&Destiny]

Originally Posted by D_McG

have they done pre/post nursing weights to check how much he's transferring?

Nope. That would have fallen under the category of doing something helpful.

Originally Posted by Megan73

Double check my math, but when I plug his stats into the infant growth calculator at Kellymom.com I get a weight gain of 3.9 ounces a week which is low but not worthy of hospitalization in a baby who looks good - he should be gaining 5 to 7 ounces a week.
I would suspect low supply or a transfer problem (which by now would reduce supply). I know from experience that swallowing and plenty of wets mean that baby is drinking and isn't dehydrated, respectively, but don't necessarily mean he's getting enough to grow well.
If I were you, I would rent a baby scale to do test feeds to see exactly how much he's transfering and to monitor weight closely, eliminate bottles and supplement at the breast with a SNS (an ounce after four feeds is much better than one four-ounce bottle), pump after feeds and try domperidone - really the gold standard for galactogogues.
Ignore the Monday deadline. Calibrate the supplement for appropriate growth - I'd suggest at the high end so he can catch up a bit - then monitor weight gain closely so you know when you can ease back.
Honestly, I think you'll probably be able to boost your supply and get rid of the supplements.
Just my 2 cents...
Good luck, mama!

I completely agree that, while he's not gaining well, he's just hanging on under the low side of normal. Not hospital-worthy.

"I know from experience that swallowing and plenty of wets mean that baby is drinking and isn't dehydrated, respectively, but don't necessarily mean he's getting enough to grow well."

Thank you for this. I really needed to hear it. I've been slowly forced to this conclusion myself, but nobody has ever said it.

We have a baby scale at home (since DD had similar issues). I've been doing daily weight checks, but never weighed before and after feedings, because, up to know, I've been so certain that wasn't the issue. I forgot to do it this morning, and we're heading out for the day, but I will definitely check it out ASAP.

I'll look into the domperidone.

Thanks, everyone, for the input. I really appreciate it. I'm about at the end of my rope here. Not for the first time, unfortunately. Us moms always find more rope, huh?

[mrsgrasty]

my little one is very similar. weight 7,13 at birth. went down to 7,3. now, at 18 weeks, weights 10,6. not good.

i've been consulting touch with the lactation consultant, LLL, my midwives and others. we are definitely in crisis mode, with pumping, taking every galactogogue i can get my hands on, and supplementing with bm (mine and others).

this is all very new, because we don't go to the doctor. i ididn't know his weight. i just thought he was a little guy and a slow gainer, as he is quite active and happy. but after a lot of comments, it got to me, and i decided to go to the lc for a weight check. he only gained 2 oz in the last 2 weeks. yikes.

NO ONE, the LLL, the LC, etc., has acted like this requires the hospital. no one has even suggested we go to the doctor.

can you call LLL in your area? often, the leaders are extremely knowledgeable, and will do home visits. or try calling a local midwife and ask if she or any other midwives she knows are experts in breastfeeding issues. a midwife in our area has a 99% success rate with breastfeeding problems. i feel much more comfortable with them than a doctor when it comes to breastfeeding.

also, i am planning on starting an SNS soon, hopefully tomorrow. eating oats every day. drinking barley water. taking fenugreek and blessed thistle. trying to eat plenty of lactogenics. this website really helped me: http://www.mobimotherhood.org/MM/article-diet.aspx

in case you are curious, we are not exactly sure what our issues are either, but it seems like: my son has a lazy latch due to a tied frenulum. he can latch correctly, just needs to be coached to do it right every time. we have basically fixed that problem in the last week, but because of it, my supply went down. so now i am pumping pumping pumping. we think my supply was also effected by my poor health the last few weeks. it doesn't help that i haven't been eating or drinking as well as i could because of it.

anyway, we are still trying to figure it out as well, but this is where we are now. we weigh tomorrow, and i am hoping to see some good weight gain. otherwise, we are back to the drawing board.

good luck.

[loraxc]

Has anyone checked baby for tongue or palate issues? My DS nursed allllll the time, peed and pooped fine, but also was gaining about 4 oz/week at this age (but no one said anything about the hospital, though FTT was mentioned but never officially diagnosed). He had fairly severe posterior tongue tie that no one recognized for ages and a high palate, and also had low muscle tone (which persists but is mild; he has no other known issues). It wasn't so much that he wasn't nursing enough but that nursing was exhausting to him. Really, he was nursing TOO MUCH, in a way. If you at all suspect this, you could try pumping and feeding expressed milk.

A lot of LCs and peds don't know squat about palate and tongue issues. DS's story did not have a great eneding; his tongue was clipped and he had oral motor therapy, but his nursing never really got much better and we ended up supplementing. He still didn't gain very well till he started solids.

[AislinCarys]

I second everything Megan said!

We also at one point got the "feed lots of formula (or grudgingly, donated milk) and get the weight up lots by Monday, or we'll hospitalize her". Which is actually quite silly, and not very helpful with a healthy, strong baby, who just doesn't gain very well. I think it is just a way of bullying parents.

That said, my DD did need extra, and we did need to work on feeds, and up my supply, which by then was less than optimal. The SNS (although I think the lactaid is better), after feeds, with a small amount of donated breastmilk, as we used no bottles. And switch-nursing for at least an hour, a feed staring every three hours (or less) in the daytime. Fenugreek, and Domperidone for a while.

Find another ped. After the hospitalization threat we went to a ped privately, and he was much better. He was quite ok about us working on supply, and cutting down, slowly the extra milk, assuring us that even if she would have been starving, that wasn't a problem, as she would easily catch up, so there was no need to stress about it.

[Dynomite&Destiny]

Mrsgrasty-How's your LO doing? While I certainly wish this on no one, I have to admit it your post makes me feel a little less alone. You, too, AislinCarys. Thank you. Sincerely.

I'll have to look into a SNS.

Loraxc-I asked the "lactation nurse" to check for a posterior tongue tie, and she stuck her fingers in his mouth, but I'm not sure she knows what a posterior tongue tie is. Besides the slow weight gain and constant nursing, did your DS have any other symptoms?

We had a follow-up with our regular ped today. He's a nice guy, but just so uninformed. I feel like there's a campaign out there to stop me from breastfeeding. He was excited about DS's weight gain (9 ounces this weekend, which, yes, is good, but I wish we didn't have to give him that nastiness. I would have used donor BM, but I'm on a restricted diet to tame his spitting up. I'm hoping the Neocate won't aggravate it), and told us to keep it up until DS's weight percentile matches his height. 71%. 6 more pounds . Yeah, I sincerely hope to have phased out that stuff by then.

I asked him if it could be a low supply issue on my part; if there could be a physiological cause. He essentially patted me on my head, assured me I was a great mom, and that wasn't possible. When I know it is possible (hypothyroidism?). He told me some moms can nurse for 4 years, and some mom just dry up after 1 month. All moms are different. Have you ever head of such a thing, moms with infants just stop producing milk for no reason? It was at this point I kind of tuned out of the conversation. He would hardly even acknowledge the existence of domperidone. (I'm trying to convince DH it's not poison as well.)

Despite my pumping and herbs and oatmeal and whatever, I think my supply is starting to dip already, or he's preferring the ease of the bottle (SNS, ASAP!). Even though I know there was still milk, DS would not calm on the breast this afternoon, and that never happens. I was so sad. I just can't think of how I can properly explain to people why this is so important to me. They just don't seem to get it. It's like telling somebody they can no longer hug their child; instead they'll get hugs from a super efficient hug machine. And then, eventually, your arms would atrophy and fall off.

[jenfl]

I'm so sorry you're having a tough time.

I haven't BTDT with the FTT, but I just wanted to comment on the posterior tongue tie. I don't know that that's the problem, but in case you want to get it checked out. It's true that very few people will be able to diagnose it. Your best bet is a pediatric oral surgeon; second best is a pediatric ENT. I have a site that has my story about PTT (http://floridatonguetie.blogspot.com/) and on the side there's a link to a site with a list of practitioners who will recognize and clip a posterior tie.

Good luck!!!

[mrsgrasty]

Thanks for asking, D&D. He's doing great. We've been supplement with breast milk for a week now and he is definitely gaining. Last weight check he had gained 3.5 oz in 4 days, so I am very happy about that.

My supply is coming back up quite nicely. I've noticed in the past that my supply is quite responsive. Don't drink enough water today = lower supply. Drink
2 cups of Mother's Milk Tea = a small boost. It has definitely held true in this situation as well, and I'm so thankful. He's already taking less supplement.
Like your little one, he definitely was showing even more signs of frustration at the breast since switching him to the SNS.

I wanted mention: what we are using is not actually an SNS. The lactation consultant just gave us a bottle and a feeding tube. We cut a hole in the nipple, put the tube in it, and it works just like an SNS. It's working very well for us, and has a lot fewer parts to mess with and wash. If you have access to someone with those things, I would suggest it.

Hang in there, Mama. I'm sure your little one will be fine. You are doing everything you can, and that's all you can do.

[sbrinton]

If you child does need an NG tube to catch up, there is no reason you couldn't have an NG tube at home. It might take a few days for you to learn how to do it (to feel comfortable putting it in), but there are children who have NG tubes at home. If for whatever reason he's having a hard time getting enough calories in, an NG tube with fortified breastmilk or formula while he sleeps might be helpful for a little while.

If you need to be in the hospital, I hope your hospital has a set up where you can stay overnight with the child and you can pump in the room (our local Children's hospital is set up like this).

[chaoticzenmom]

I'm not sure if this would fit into your diet and it seems like you know way more than I do, but have you tried beer?

http://www.ncbi.nlm.nih.gov/pubmed/11065057

[smeep]

Originally Posted by mrsgrasty

I wanted mention: what we are using is not actually an SNS. The lactation consultant just gave us a bottle and a feeding tube. We cut a hole in the nipple, put the tube in it, and it works just like an SNS. It's working very well for us, and has a lot fewer parts to mess with and wash. If you have access to someone with those things, I would suggest it.

That's what I recommend a LOT as an alternative to an official SNS or Lact-Aid. You can buy the neonatal tubing online for usually around $2 plus shipping. WAY cheaper! A tip I learned from Dr. Jack Newman.

[ShwarmaQueen]

Originally Posted by loraxc

Has anyone checked baby for tongue or palate issues? My DS nursed allllll the time, peed and pooped fine, but also was gaining about 4 oz/week at this age (but no one said anything about the hospital, though FTT was mentioned but never officially diagnosed). He had fairly severe posterior tongue tie that no one recognized for ages and a high palate, and also had low muscle tone (which persists but is mild; he has no other known issues). It wasn't so much that he wasn't nursing enough but that nursing was exhausting to him. Really, he was nursing TOO MUCH, in a way. If you at all suspect this, you could try pumping and feeding expressed milk.

A lot of LCs and peds don't know squat about palate and tongue issues. DS's story did not have a great eneding; his tongue was clipped and he had oral motor therapy, but his nursing never really got much better and we ended up supplementing. He still didn't gain very well till he started solids.

What I was thinking! Almost the EXACT same thing happened to us!