Torticolis, tongue tie, not transferring well, reflux, not gaining weight, diarrhea..anyone?

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coahline

New member
Feelin pretty down everyday about my abilities to breastfeed as a mom. Every feeding is a struggle and I feel like he gets just enough to be satiated but he works sooooooo hard. I give a bottle and the next feed he forgets how to nurse. We are at 8 weeks today. He had a tongue tie revision at 6 weeks and his tongue is not working correctly still. He is in OT now but I’m really struggling with him not feeding well. He doesn’t do the big gulps like he should and is back to chomping. When I give him a bottle, it takes him some time to even figure out the nipple as he Gags on it.
His pediatrician wanted him to be EBF but every time I go in he isn’t really gaining weight. Plus, his pediatrician isn’t back until the 14th and it just feels like I am living in my own he’ll scape.
At 6 weeks he was 9.4 and this week at 9 weeks he is 9.5. It’s really concerning. When he breastfeeds, he barely poops and it’s green with little black specks. When I give him a bottle of my milk, diherrea and now red specks. Additionally, I know he doesn’t transfer much and spits up my breast milk, even after burps. He also has torticolis which doesn’t make this any easier. I feel so f**Kin bad for my kid like my genetics put him in a tough spot. And also, it was my dream to breastfeed for 12 months plus. I don’t feel like it’s an option and while I have a lactstion consultant and OT and PT and a pediatrician… I feel like something is off and would be easier if I moved to either combo or full formula. Anyone else had this Situation? If so, what happened and did it get better? It just breaks my heart that during these special moments during breastfeeding, I feel like I failed him.
 
@coahline Firstly, you didn't fail your baby. We are lead to believe that nursing is easy but for most people it really isn't.

My baby really struggled with nursing, was working too hard to get milk thus wasn't gaining weight, and it grew to be a dangerous situation for him. I started triple feeding for a (long) while but also had to supplement with formula starting around 3 weeks. It's been a really emotional journey for me but at 8 months he's now really healthy and doesn't care how he gets fed.

I know you mentioned your pediatrician is out of office but there must be someone covering. As for the pediatrician wanting you to EBF, they should really care about your baby and you being healthy. If that's from formula, so be it.

You're not alone - so many of us go through this. Lean on your resources and feed your baby however feels best, and that can change back and forth over time.
 
@jkb2011 Thank you for this.

The pediatrician that is covering doesn’t want to go against the other pediatricians advice but I see him again today because of the diarrhea/loose stools.

I am so glad to hear your baby is healthy and happy. How long did it take for your baby to transfer efficiently? It’s been two weeks since the revision and every time I introduce a bottle,
We are back to square one. He is otherwise super happy, healthy, smart, sweet and alert! Everyone is just in love with him when they meet him and are really impressed by how great he is doing. I just feel such a responsibility for him to grow and thrive and the growing part is where I’m concerned.
 
@coahline I'm glad you have an appointment scheduled! I have to believe that if there are true weight concerns, this pediatrician will take it seriously.

Our baby had to start with bottles (pumped milk and formula, supplemented for extra calories) around 3 weeks. We were lucky that he adjusted to bottles easily after we tried a few brands. He was able to start nursing effectively after a few months but at this point we really only comfort nurse before sleep.

I love that your baby is doing so well overall - he sounds amazing and you sound like an amazing mama!

Have you tried different types of bottles? There may be a specific kind he's into.

Please keep me posted!! It gets easier.
 
@coahline Don’t have a solution, but wanted to say go with your gut. Specialists often have one size fits all solution, but you know what’s best for your baby. I’ve been EP, and that is at least reassuring because I know how much my baby is taking every feed. Even though it’s not as satisfying as EBF.

My doctor said poops are expected to go down especially with breastfeeding. Even one in many days is normal.
 
@thomasleonard How do you pump and take care of your baby at the same time? My man goes down only for a bit and I never feel like I have enough time to pump and breastfeed and clean my parts. And how many times do you pump?
 
@coahline It’s not easy, especially for the first couple of weeks. You can try to coordinate with baby feeds. So every time you finish feeding the baby, pump! I find that if I put my baby on my legs or on the bed touching me, she’s usually happy with the contact and falls asleep. Sometimes if she gets fussy mid pump, I’m able to sit her up on me between the 2 flanges. Of course there are times when she’s too fussy and I just need to disconnect. You could also look into a hands free wearable pump, especially if supply is not a concern for you, that may be enough. I rented a hospital grade pump that cuts my pumping time down.

I believe if your supply hasn’t regulated yet, you should aim for 8 pumps per day. I try to coordinate with baby feeds but also try to do them every 2-3 hours during the day and then 3-5 hours apart at night. I will aim for 8, but be satisfied with 6-7 if that came at the cost of me spending time with the baby.

If your husband can help, plan for a couple of good pumping sessions a day and the rest you can juggle around. For me this is usually the night time one, once baby is asleep and the one in the morning after I wake up. I spend extra time, massage and try to empty breasts as much as I can, it helps me get away with quicker sessions rest of the day.
 
@coahline I know this is an EBF group but you could EP first to get up your milk supply and see if cutting out things for two weeks each - dairy, gluten, soy and if it makes him better. Try BF when he’s slightly older. Continue with all the OT he is getting, is he still very stiff and that’s causing breastfeeding issues? I would pump 20 mins both breasts every 2 hours and do one power pump session for an hour (pump 20 mins, rest 10 mins, pump 20 mins, rest 10 mins, pump 20 mins) between 1am to 5am when prolactin levels are the highest. Set up an alarm for pumping. Rest of time focus on baby’s other issues. When you are pumping make sure you are drinking two glasses of water, eating all the lactation cookies, bars, crackers during each pumping session. During night time power pumping take all the lactation supplements without fenugreek.
 
@coahline What kind of green? Like pale yellowy green or dark green? Are the black spots like seeds or are they tar like bits of poo? Is it mucusy? I'd be concerned with a milk allergy. I think if I was in your place I'd start by cutting out all dairy. It leaves your breast milk pretty fast but could take a while for baby's gut to heal. If you do formula and it has whey or casein it could also be an issue. Breastfeeding is a relationship and both people are learning. It can be a challenge. Your mental health is not less important than getting babe breast milk. Is it ideal? Sure. But at the expense of mom? No. So you can definitely work towards ebf. But its also not all or nothing. You can always try different things. I did combo with my first, technically boosted calorie feeds. I exclusively pumped and added formula because she was a preemie and needed to gain weight. Eventually we were able to go ebf. But that was strictly following a peds advice. My second had some formula in hospital while I was recovering from a rough csection. My third has only ever been ebf. Every kid is different and you are doing a good job.
 
@coahline No solution, but we are scheduled for tongue tie revision, and the LC we worked with first advised that it’s “non-linear improvement” for at least 3 weeks afterward, even warning that at times it will seem worse than before, but eventually it does get better.
 
@coahline Hey what you’re doing incredibly hard! My babe had all that going on too and we saw all the lc and OT and SLPs with varying success. I don’t have experience with the poops, and I would definitely push to see a ped sooner than the 14th.
Sorry if this is redundant or unwanted advice but somehow we did get all the way back to breast, and I feel like I too worked ridiculously hard to make it happen. I also didn’t feel like it was feasible to EP cause he sleeps on his own for only 30 min and only a couple times a day.
As far as exercises what kind of stuff are you doing? Take it or leave it but this was some of the things I did: everytime before he latched I used a ninni pacifier for like 30 seconds. To help him organize his suck, this helped tremendously with latching pain. We would do oral exercises, as much tummy time as he would tolerate and scm (torticolis stretches) every. single. wake window 🫠 Did the frenectomy doctors did a follow up to check his healing? Some helpful resources for suck training are LA lactation YouTube and insta. I actually scheduled a virtual consult with her through the lactation network which your insurance might cover (if in the US).
Tummy time with a lot of actively getting him to look the other way. Black and white books and this “spinning led orb” like 12$ on Amazon, that thing was mesmerizing and helped so much with visual tracking. We did tummy time on the floor, on my belly after every diaper change on a yoga ball. It helps to stretch the front of their body including especially their tongue which will help it move more freely and effectively.
Supervised tummy naps with his head turned to the non preferred side.
And there’s a lot of torticolis stretches on YouTube. I did the tiger hold, a supine and a prone stretch everytime he was awake.
I feel like I had read so many experiences where things turned around at 8 weeks so I felt pretty hopeless when things kinda got worse for us at 8 weeks. There is a developmental leap around this time and yea his suck got so chaotic around then. His turnaround was more like 11 weeks.
Maybe some of that is useful. But all that said he wasn’t having trouble with weight gain, so follow your gut and get some input from a pediatrician and an lc on that. Maybe ask about a supplemental nursing system and potentially try different bottles to see if they help him get some food in him?
Feel free to dm me if you want any resources help with the physical therapy kind of side. I did a deep dive there.
 
Also nourished young (she’s on insta and has a website) has amazing advice and videos about latching. Was super helpful to understand their feeding reflexes and trying to keep those activated and clear. I ended up seriously cutting back on using the nursing pillow and mostly feed side lying or a reclined cradle hold.
 
@coahline I had similar issues with my first. Tongue tie, low weight gain, etc. I did end up combo feeding, but as a part of that I breastfed for 10-11 months. It did take a while after the tongue tie revision for it to get better - and I think his mouth getting bigger also helped. And I believe combo feeding saved my breastfeeding experience because it allowed him to get stronger and feel better overall, and curbed my anxiety and exhaustion. My LC explained that baby was having to work so hard to feed that he was using up all the calories he got from my milk doing that instead of growing.

You’ve gotten other good advice here, so I’ll just add as (I hope) encouragement- I just had my second and he’s totally different and the breastfeeding is going well. He doesn’t even spit up. I don’t know your future plans, but I hope that’s encouraging in case you’re hoping for a second - it can be totally different with a different baby.

Best wishes!
 
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