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Arctic Mama

So how do you bottle feed a baby who’d rather hunger strike than take formula?

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Me and my tanking breastmilk supply would really like to know. It’s been five hours and he still is refusing the bottle and barely swallos what I get in, but he just isn’t nursing well enough for me to make enough for him anymore, because of poor latch and other issues.

 

Pumping isn’t an option, all my freezer breastmilk has been tossed with the move and I can’t let down for the pump with so little production anyway. Sippy cups aren’t an option developmentally either, it has to be a bottle.

 

He used to like this flow rate as an infant, but when we stopped having to give seizure meds we stopped using the bottle for even partial feeds. Now it’s boob or bust, but the boobs are increasingly a bust.

 

Do I just keep offering until he’s too hungry to refuse? This is day five of trying and he still hasn’t caught on, but the breastmilk issues are getting worse and worse. How do we make formula work? No allergies to speak of, by the way.

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Have you tried different formulas? Maybe he hates the taste of that one but will like another?

Maybe, but he will eat it when I mix it into a purée? I could try another brand.

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Does he not like the bottle or the formula? My oldest is hyper picky and would only use Nuk baby bottles and Nan formula. He spit out the Avent baby bottles to the amusement of my SIL and he spit out Similac when we tried using the sample small can. I ended up giving all the sample cans of Similac and Enfamil away to neighbors with less picky babies. My younger boy would take any brand of milk bottle or formula.

 

For my cousin who refused baby bottle and sippy cup, one of my aunts just fed him by spoon. I have plenty of aunts and cousins though so at least one of them would be willing to help feed.

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He used to like these Dr Brown’s, but maybe he wants a fatter nipple shape? Can I try other nipples on these bottles since we already have a bunch?

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Is it that you hurt from nursing or is it that he's not getting any? I ask because you can resort to a supplemental feeder like this one if it's just a supply issue: https://www.amazon.com/Medela-009-0003-Supplemental-Nursing-System/dp/B000W73YKY . I used one for months to "nurse" an adopted baby while I was pregnant. Another option is to try to spoon or syringe feed him for a short while. It's a pain but if it's the artificial nipple that he hates this might help a little while he's getting used to the bottle nipple.

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I could try an SNS as a last resort. I’d rather not fuss with it, though. He has poor stamina and cerebral palsy that affects his trunk very much, so nursing is incredibly tough on both of us. He has a shallow latch and gives up when he gets to hind milk or I’m not actively letting down, so his feeds are small and my body scales down production because the breast isn’t drained. But I can’t pump after I nurse for practical time reasons as much as that I can’t really let down for the pump, and he has never taken breastmilk very successfully from a bottle except when he was a newborn in the nicu (and successful is relative - he still was awful at it and narrowly avoided a feeding tube).

 

If I absolutely can’t get him to do a bottle after trying different nipples and formulas tonight I might resort to supplemental systems. But I’d like to just let my milk production drop if we aren’t nursing exclusively, so I can manage my other health issues (finally).

 

It’s a mess!

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Try other nipples or bottles? Sorry, feeding issues are so frustrating!

 

:grouphug: :grouphug: :grouphug:

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At this point I would look for a community milk donor, to see if he'll take someone else's milk in a bottle. There are FB groups, and websites that list people willing to do this for others. Google "milk share" or "donor breastmilk." 

 

You might be able to get banked milk covered by insurance, but with as old as he is, that's probably a long shot.

Edited by Ravin
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I syringe fed Luna as a new born. It's a huge pain, but it is a possibility. 

I didn't want to use SNS either, but you do need to consider it. 

When Luna stopped taking the bottle at 7 months, we switched to purees and cereal mixed with formula. Squeezy spoons and food pouches were our lifeline for a long time.

Edit: A haberman might be a good option for him if his sucking power is weak. 

Edited by desertstrawberry5
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He may not swallow well enough for this, but with my special needs kiddo with no appetite, I bought a bottle "nipple" that was silicone but shaped more like a sippy cup with a couple of holes on top. I could squeeze the bottle so a mouthful would go into her mouth and then she would swallow. She was a little older though--I know I nursed her just fine until about 16 months old.

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How old? My milk supply was so low when I was pregnant wuth #2. Ds was only 9 months old. He could take a sippy and eat food so Im no help, but he never would have formula or a bottle. My ped said he was fine.

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How old is he? I can't remember. My second son hated the bottle. We could only get him to take it if we sat him on our lap sitting up facing away from us. It was a suggestion I got from a lactation consultant. It was like he didn't associate that position with breastfeeding so would do the bottle. And even then he would take it ok from dh but not from me at first.

 

If he's older could you do a cup of some kind? Just to maybe help transition.

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What nipples are you using? For all my babies, we ended up using the fastest flow rate possible (even cutting Xes in the opening) to feed. My letdown was so fast that my children never accepted any flow rate but fast flow when I wasn't there to feed them from the breast.

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I was thinking haberman or SNS too.  I assume that poor oral tone may be an issue--especially if you had a naturally strong let-down before.  I'd hate to see you get into a situation where he ends up with a temporary ng tube.  Some babies simply will just refuse to eat--you can't assume that hunger & desire to survive is going to kick in. How important is it that you get something in him v. you complete weaning him?  Some kids just aren't ready to be weaned, imo.  I have re-lactated kids twice and had to build up my supply with my preemie.  You aren't asking for milk supply advice, though....

 

If this is day 5 of inadequate nutrition, I think I would pull out a syringe and try that next.  You likely have a tired baby on your hands who could use some calories and you need to buy time while you sort this out.

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He’s 9.5 months old right now. Developmentally his swallow isn’t really safe for most liquids outside a bottle of purees.

 

Tentative plan tonight is to go get some different nipples and another type of formula and see if that goes better. If not we will see if we can get him to take just purees/thickened formula, but I worry about him getting enough fluids that way. SNS or similar is absolute last resort.

Edited by Arctic Mama

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I can’t remember, is it safe to add some heavy cream to the formula at this age to help with weight gain? I know it’s not appropriate for younger babies.

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At 9.5 months (how did that happen ?!) he might prefer a sippy cup to a bottle. Some babies are more willing to take formula from a cup. It might take him a little while to work it out though.

 

I strongly suggest someone who isn't you tries the bottle feeding.

He might, but his swallow isn’t safe for really high flow yet. I will bring it up with his occupational therapist and see if she is willing to help us try it. It’s tough because if he didn’t have low oral tone and low core tone, plus reflux because of the cerebral palsy, I’d agree.

 

It’s like being a new parent again with the special needs blahblah. I thought I had it all down until this kid ;)

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I was thinking haberman or SNS too. I assume that poor oral tone may be an issue--especially if you had a naturally strong let-down before. I'd hate to see you get into a situation where he ends up with a temporary ng tube. Some babies simply will just refuse to eat--you can't assume that hunger & desire to survive is going to kick in. How important is it that you get something in him v. you complete weaning him? Some kids just aren't ready to be weaned, imo. I have re-lactated kids twice and had to build up my supply with my preemie. You aren't asking for milk supply advice, though....

 

If this is day 5 of inadequate nutrition, I think I would pull out a syringe and try that next. You likely have a tired baby on your hands who could use some calories and you need to buy time while you sort this out.

When he hasn’t been feeding I’ve been giving half a purée with formula in it and then topping him off with nursing. He isn’t lethargic, dehydrated, or hungry among what we are doing, but yes, the low oral tone is definitely a big issue. My supply just keeps dipping further as he doesn’t drain the breast, so it’s a bad cycle.

 

I have plenty of milk if he will eat it, but we can’t get him to eat well enough at the breast to manage that lately. And every cycle my supply temporarily drops, making the issue worse. If he could drain the breast better I’d just keep nursing him.

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I can’t remember, is it safe to add some heavy cream to the formula at this age to help with weight gain? I know it’s not appropriate for younger babies.

I used coconut oil. Dairy is a no-no for us. 

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Ok so his swallow isnt safe for liquids. I havent btdt, but my niece has down syndrome and sil put some sort of thickener in her drinks. I dont know what it was and it was a long time ago. Maybe someone btdt knows what Im talking about. I wouldd let him nurse anyway because they always seem to be getting more than I think they do, for me anyway.

Edited by Elizabeth86

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You mentioned OT but does this baby have an SLP?  This is an SLP issue for sure given what you've described.  You can get a referral from a pediatrician for an SLP.  

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Ok so his swallow isnt safe for liquids. I havent btdt, but my niece has down syndrome and sil put some sort of thickener in her drinks. I dont know what it was and it was a long time ago. Maybe someone btdt knows what Im talking about. I wod let him nurse anyway because they always seem to be getting more than I think they do, for me anyway.

 

Yes, sometimes for certain swallowing disorders or problems a thickener is required but this is something one would need to go through a qualified SLP to decide.  The need for thickener in liquids would be related to dysphagia which needs to be diagnosed and treated by an SLP as soon as possible, since with most things like this, the sooner intervention is started the better.  

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He might, but his swallow isn’t safe for really high flow yet. I will bring it up with his occupational therapist and see if she is willing to help us try it. It’s tough because if he didn’t have low oral tone and low core tone, plus reflux because of the cerebral palsy, I’d agree.

 

It’s like being a new parent again with the special needs blahblah. I thought I had it all down until this kid ;)

 

 

Here you bring up low oral tone...this is absolutely an SLP issue.  Although you want your OT to be a part of the team here to help in the areas where they can too, an SLP is absolutely necessary for these issues.  

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Yes, sometimes for certain swallowing disorders or problems a thickener is required but this is something one would need to go through a qualified SLP to decide. The need for thickener in liquids would be related to dysphagia which needs to be diagnosed and treated by an SLP as soon as possible, since with most things like this, the sooner intervention is started the better.

Ok good info. See I didnt know a thing about it.

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With low muscle an SNS might not work. A syringe connected to a tube (I think that you need an ng tube) that you place on your finger or your nipple might work better. You just push the formula through while he sucks with your other hand at the rate that he can handle. It also gives him a break. There is just no work required from him.

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You mentioned OT but does this baby have an SLP? This is an SLP issue for sure given what you've described. You can get a referral from a pediatrician for an SLP.

We have an SLP but her specialty is deafness and communication. Feeding is handled by the OT in this clinic. His swallow and latch were deemed sufficient in Alaska, the issue is more that he hates it than capability with the bottle. Remember he took these okay six months ago, he just likes boob best.

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You definitely need to be working with an SLP who is experienced with infant feeding since as you mentioned there are low oral tone issues too, since that is an SLP area and not an OT area.  The oral tone is still part of "swallowing" and is something SLPs are all supposed to be qualified to handle and that OTs do not have the education or training to diagnose or treat.  OTs work on other aspects of feeding.  There are multiple stages of the swallow and a baby with low oral tone likely has a swallowing disorder and should be treated as early as possible by a qualified SLP...just because a baby can swallow a liquid without aspirating it into their lungs does not mean they don't have a swallowing disorder that still needs to be addressed.  The situation you describe where they have an OT working alone on the feeding and an SLP only for communication is not at all appropriate and is disturbing.  I'm just passing this info along so that you are aware that whatever this clinic is doing in this area sounds inappropriate.  I'm shocked that any licensed SLP wouldn't address the oral tone and it's relationship to feeding issues and work together with the OT and the rest of the team on feeding.  Usually the SLP leads the team with these situations.  

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Can you mix breast milk and formula in decreasing ratios? Add a touch of formula to breast milk with no extra liquid (ie don’t mix the formula with water first-just breast milk). It thickens it, adds calories, and gets him used to formula? Then wean him off the breast milk gradually?

 

 

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Btw, if you’re feeding your child with a syringe, it’s time to consider a feeding tube. Been there, done that. A feeding tube while not the preferred way, made my life so much easier. My son eats all of his calories now but still continues to get liquid via feeding tube. He just has such trouble swallowing it and I think he doesn’t like the sensation.

 

 

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Can you take domperidone to bring your milk back in? It worked great for me. And then pump not to feed him but to keep up your supply. That is unless you just really want to switch to bottles.

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Syringe was a bust: I think it might be the flavor.

 

Well, formula does taste pretty nasty.

 

Some things to try:

donor milk (as mentioned above);

goat's milk (my bf DD would drink this but not other milk when she was little--obviously other sources of nutrition must be involved but it could help get over the hump. 

Different brands of formula, one may have a flavor your baby will accept. 

If you're worried about hydration, there's pedialyte or small amounts of water which you could offer in addition to the purees.

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You definitely need to be working with an SLP who is experienced with infant feeding since as you mentioned there are low oral tone issues too, since that is an SLP area and not an OT area. The oral tone is still part of "swallowing" and is something SLPs are all supposed to be qualified to handle and that OTs do not have the education or training to diagnose or treat. OTs work on other aspects of feeding. There are multiple stages of the swallow and a baby with low oral tone likely has a swallowing disorder and should be treated as early as possible by a qualified SLP...just because a baby can swallow a liquid without aspirating it into their lungs does not mean they don't have a swallowing disorder that still needs to be addressed. The situation you describe where they have an OT working alone on the feeding and an SLP only for communication is not at all appropriate and is disturbing. I'm just passing this info along so that you are aware that whatever this clinic is doing in this area sounds inappropriate. I'm shocked that any licensed SLP wouldn't address the oral tone and it's relationship to feeding issues and work together with the OT and the rest of the team on feeding. Usually the SLP leads the team with these situations.

We had a swallow study and went to deal with the swallow already with an SLP and were cleared. The county won’t qualify us for services in that area unless something appreciably changes. If the OT notes some dysfunction that is new relating to solids or the bottle we may be able to be re-evaluated.

 

It wasn’t not noted, it wasn’t necessary prior to this. He was feeding well enough to pass his metrics and his weight gain was good. This is the department of developmental disabilities and the county services for early intervention, and our alaska team and the hospital, who cleared us on this :)

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Btw, if you’re feeding your child with a syringe, it’s time to consider a feeding tube. Been there, done that. A feeding tube while not the preferred way, made my life so much easier. My son eats all of his calories now but still continues to get liquid via feeding tube. He just has such trouble swallowing it and I think he doesn’t like the sensation.

 

 

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I’d go with a g tube if needed in a heartbeat. Problem is he can nurse, but not well enough, and through sheer force we have gained weight. However my milk is dropping like a rock. Domperidone might be an option, but I’d just love to be done with the drama. He can take purees by mouth and just started, however badly. So I don’t think he qualifies for surgery. It’s frustraring because we aren’t bad enough in multiple areas to get help easily, but we aren’t good enough to thrive.

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You mentioned OT but does this baby have an SLP? This is an SLP issue for sure given what you've described. You can get a referral from a pediatrician for an SLP.

And not just any jack-of-all-trades SLP but one who specializes in infant feeding issues.

 

 

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We had a swallow study and went to deal with the swallow already with an SLP and were cleared. The county won’t qualify us for services in that area unless something appreciably changes. If the OT notes some dysfunction that is new relating to solids or the bottle we may be able to be re-evaluated.

 

It wasn’t not noted, it wasn’t necessary prior to this. He was feeding well enough to pass his metrics and his weight gain was good. This is the department of developmental disabilities and the county services for early intervention, and our alaska team and the hospital, who cleared us on this :)

 

Just a note that things have changed. 

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Wow that's terrible. It's sounds so similar to what happens in the school districts in many areas as well where there are guidelines for qualifying for services that are not in line with the actual standards of practice in a field and the client's best interests. I hate hearing about these situations. Anyway, it sounds like you have been through a lot and I wish you the best of luck!!!!

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And not just any jack-of-all-trades SLP but one who specializes in infant feeding issues.

 

 

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Unfortunately it was the flown in specialist who cleared us. When I meet with the CP team at Cincy I will bring it up again if it hasn’t improved. Our appointment is in two weeks. And like I said, If the OT (who is fantastic) can’t help us, she can use that as cause to refer us up the chain and be evaluated again on that. Edited by Arctic Mama
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I’d go with a g tube if needed in a heartbeat. Problem is he can nurse, but not well enough, and through sheer force we have gained weight. However my milk is dropping like a rock. Domperidone might be an option, but I’d just love to be done with the drama. He can take purees by mouth and just started, however badly. So I don’t think he qualifies for surgery. It’s frustraring because we aren’t bad enough in multiple areas to get help easily, but we aren’t good enough to thrive.

 

I remember not being able to get enough calories into dd and being so frustrated. I just wanted a g-tube to solve that particular problem quickly and easily. I mentioned it to her neurologist and he said I didn't really want that unless it was really necessary. Now looking back I can say he was right. But I do remember wanting an easier way out!

 

We had years of difficulty getting her to eat enough (some of her meds reduce appetite), but I have to say now at age 20 food is one of the many things she enjoys. She's my least picky eater. Puberty was probably the big turning point.

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Do you have enough downtime this evening to eat a bowl of oatmeal, drink a liter of water, and watch Netflix and pump? I would try to pump and syringe feed just to confirm it is a taste preference that is the major issue.

 

You are right that SN feeding is a completely new challenge. Huge to you!

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To make it easier for your baby to get the milk, you could try wet warm cloths on your breasts a few minutes before feeds, then massage and kind of shake the breasts, which sort of loosens things up.

 

Good luck with it all!

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Well for my NT girl, who was losing weight the threat of her being hospitalized is what got her drinking formula. I left her hungry and home with dad and it finally clicked. Him feeding her when I was at home didn't work.

 

Good luck, I remember the desperation of not having enough milk and a daughter who refused bottles, it's not fun.

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Can you get in to a feeding clinic at the children's hospital? I would try to get on their waiting list.

 

With my cp one (milder than Benny) we used the soft "disposable" bottles from the hospital with a the disposable (but we washed them) nipples. I could squeeze a bit to make it easier for her but flow rate wasn't too fast.

 

If he is expending so much energy eating the g tube for liquids might be the way to go just so he can put more energy into eating purees and other developmental tasks.

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Do you have enough downtime this evening to eat a bowl of oatmeal, drink a liter of water, and watch Netflix and pump? I would try to pump and syringe feed just to confirm it is a taste preference that is the major issue.

 

You are right that SN feeding is a completely new challenge. Huge to you!

It might not be all of it, because he won’t take breastmilk in the bottle either. Maybe a combo of the two? I grabbed a new formula and a different nipple shape entirely; if that doesn’t solve it I’ll see what I can do.

 

Y’all, he prefers ZANTAC to formula. He tolerated the syringe until he realized it wasn’t his reflux medication!

Edited by Arctic Mama

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Nighttime was what worked for me. Pull them out of their bed a few hours after falling asleep. They're so out of it that they'll pretty much accept anything in their mouths.

 

I had to do this with a ebf baby who had to transition to bottles of hypoallergenic (extra yucky) formula. At first I bottle fed breast milk at night until he'd take the bottle. Maybe 3 nights? Then I started adding small amounts of formula. So 25% formula then 50% and so on. I think the process took about a week?

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Haven't read every post.

 

The SLP may or may not be looking at all areas. Have you already outruled other issues like tongue/lip ties?

 

I used (and many in my LLL group recommended) the Lansinoh slow flow nipples. Don't have to change flow (reasoning is that nipples don't change size).

 

Have you seen an IBCLC?

 

 

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