u/Popular-Praline-221

I have posted about our situation before in other subs but unfortunately it just keeps getting worse and I am losing hope quick 😔

Our now almost 9 week old has dealt with horribly painful reflux since the moment he was born. We tried Pepcid at 2 weeks and that didn’t work. I cut out all dairy / soy / egg from my diet and he got officially diagnosed by the GI specialist with CMSPI at 6 weeks (we thought maybe Pepcid was helping & it wasn’t allergies causing the reflux so trialed a dairy formula to see if it would help with reflux & it made things sooooooo much worse). He stopped gaining weight and dropped to under the 4th percentile so we are fortifying our bottles with pepticate (we tried alimentum and he wouldn’t drink it). Our GI also took us off Pepcid and gave us generic nexium which is. Not. Helping. We’ve been on it for 7 days now. We are dealing with hours of screaming everyday, the gulping, the coughing, the hiccups, constant wakeups all day and night, refuses to sleep on his back, can barely drink more than 1.5 oz at a time, and by morning he is horribly congested from all the mucus buildup from the reflux. And usually at least once a night I wake to him gagging and choking on his reflux. Yesterday he spit up what seemed like an entire feed, it soaked the burp rag. The other night from 2am-7am he woke up every 30 minutes.

My husband and I are just beyond neurological overdrive from this. We also have a 23 month old who requires our care and attention. Thankfully we have amazing family help which is a blessing that will never be lost on us. But I obviously can’t bond with my baby at all 😭 not to mention the sleep deprivation has pretty much destroyed any rational thoughts I can muster about our situation (I am going up on my sertraline to help cope).

Our first barely ever took a bottle in the 13 months of nursing and it was truly the greatest experience for both of us. I had hyperemesis this second pregnancy and just kept telling myself to stay strong until it was over and I could breastfeed again because I truly loved that experience. And now I can’t even do that 😔 he screammmssss at the breast and doesn’t have enough strength to pull any hindmilk so all he gets is foremilk which makes this whole horrible cycle even worse (our speech therapist thinks that his feeding aversion has caused so much tension he basically hasn’t been able to develop proper oral function). So anyway, I am pumping full time. And I get really bad d-mer with pumping and basically have to take deep breaths and just survive the 20 minutes 7 times a day… I almost wish nursing wasn’t a good experience with my first so that I wouldn’t be so devastated about what I’m missing out on. Now I do love formula and am so grateful for it. It’s not a nutrition thing for me at all formula is amazing and anything saying it isn’t is just noise. It’s more about the personal experience and bonding and purpose that breastfeeding gave me and our first.

I probably sound like a crazy person screaming into the void but this has truly been the hardest experience for me physically, emotionally, spiritually, all of it 😩 I’m so sorry for the long post but if you made it through this ridiculousness and have any words for me I’d be so grateful. Has anyone had an experience like ours? Can you offer me hope? Was anyone able to eventually breastfeed their baby with oral dysfunction? Is there anything else we can try?

Thank you so much for even reading & just allowing a space to vent

We are dealing with severe reflux with our 6 week old & we are hoping someone may have some advice from their personal story or expertise!

Our LO was born at 39 weeks and has had severe reflux since day 1 unfortunately. With Pepcid it has gotten slightly better but he is still spitting so much & cries for a significant portion of every single day.

The first 3 weeks were significantly worse. We had a tongue tie release after having a poor latch & weak suck. Unfortunately that part hasn’t really gotten better in the last few weeks. We are still triple feeding most feeds as he doesn’t really want to eat past my letdown. We are using dr browns bottles and he takes them well. He does seem to do better with gas issues and spits up slightly less with the bottles vs breast. We are working with an LC but any progress has been very minimal. I EBF my first for 13 months and I loved the experience so much; I am so desperate to be able to get to exclusively breastfeeding this baby too.

We have been on pepcid 2x/day for 2 weeks now. It definitely has helped with the all day nonstop screaming but unfortunately he is still struggling significantly. He can’t sleep on his back AT ALL no matter how long we hold him upright after a feed. He will cough & choke & spit up & grunt everytime. We can even hear the reflux in his throat when we’re holding him upright.

I have eliminated dairy, soy, eggs, and tomatoes from my diet. I am still drinking 1 cup of low acid coffee a day and honestly don’t know how I would survive without that cup. Regardless, none of the diet eliminations have seemed to make much of a difference.

Our ped recommend trying a bottle of formula a day just to see if it would help. So we tried Bobbie gentle and it just gives him HORRIBLE gas & does nothing for his reflux.

If anyone has had a severe reflux baby & has a recommendation for us that we haven’t tried we would be so grateful for any suggestions. Thank you so much!

We are dealing with severe reflux with our 6 week old & we are hoping someone may have some advice from their personal story or expertise!

Our LO was born at 39 weeks and has had severe reflux since day 1 unfortunately. With Pepcid it has gotten slightly better but he is still spitting so much & cries for a significant portion of every single day.

The first 3 weeks were significantly worse. We had a tongue tie release after having a poor latch & weak suck. Unfortunately that part hasn’t really gotten better in the last few weeks. We are still triple feeding most feeds as he doesn’t really want to eat past my letdown. We are using dr browns bottles and he takes them well. He does seem to do better with gas issues and spits up slightly less with the bottles vs breast. We are working with an LC but any progress has been very minimal. I EBF my first for 13 months and I loved the experience so much; I am so desperate to be able to get to exclusively breastfeeding this baby too.

We have been on pepcid 2x/day for 2 weeks now. It definitely has helped with the all day nonstop screaming but unfortunately he is still struggling significantly. He can’t sleep on his back AT ALL no matter how long we hold him upright after a feed. He will cough & choke & spit up & grunt everytime. We can even hear the reflux in his throat when we’re holding him upright.

I have eliminated dairy, soy, eggs, and tomatoes from my diet. I am still drinking 1 cup of low acid coffee a day and honestly don’t know how I would survive without that cup. Regardless, none of the diet eliminations have seemed to make much of a difference.

Our ped recommend trying a bottle of formula a day just to see if it would help. So we tried Bobbie gentle and it just gives him HORRIBLE gas & does nothing for his reflux.

If anyone has had a severe reflux baby & has a recommendation for us that we haven’t tried we would be so grateful for any suggestions. Thank you so much!

We are dealing with severe reflux with our 6 week old & we are hoping someone may have some advice from their personal story or expertise!

Our LO was born at 39 weeks and has had severe reflux since day 1 unfortunately. With Pepcid it has gotten slightly better but he is still spitting so much & cries for a significant portion of every single day.

The first 3 weeks were significantly worse. We had a tongue tie release after having a poor latch & weak suck. Unfortunately that part hasn’t really gotten better in the last few weeks. We are still triple feeding most feeds as he doesn’t really want to eat past my letdown. We are using dr browns bottles and he takes them well. He does seem to do better with gas issues and spits up slightly less with the bottles vs breast. We are working with an LC but any progress has been very minimal. I EBF my first for 13 months and I loved the experience so much; I am so desperate to be able to get to exclusively breastfeeding this baby too.

We have been on pepcid 2x/day for 2 weeks now. It definitely has helped with the all day nonstop screaming but unfortunately he is still struggling significantly. He can’t sleep on his back AT ALL no matter how long we hold him upright after a feed. He will cough & choke & spit up & grunt everytime. We can even hear the reflux in his throat when we’re holding him upright.

I have eliminated dairy, soy, eggs, and tomatoes from my diet. I am still drinking 1 cup of low acid coffee a day and honestly don’t know how I would survive without that cup. Regardless, none of the diet eliminations have seemed to make much of a difference.

Our ped recommend trying a bottle of formula a day just to see if it would help. So we tried Bobbie gentle and it just gives him HORRIBLE gas & does nothing for his reflux.

If anyone has had a severe reflux baby & has a recommendation for us that we haven’t tried we would be so grateful for any suggestions. Thank you so much!

I am curious if anyone has any advice on ways to entertain my toddler while I nurse. Our baby is currently 2 weeks old & our toddler is 21 months. My husband is off work & we have family staying with us which has been immensely helpful for our very energetic toddler. I nurse the nb for 20-30 minute sessions every 2 hours pretty much on the dot. My husband will go back to work when the baby is 5 weeks and I’m thinking whaaaaat in the world am I going to do with our toddler during these nursing sessions?! I’m comfortable nursing anywhere & everywhere but I unfortunately don’t think I can physically chase our toddler around while I nurse 😅Would love any advice for those who have been through it ❤️ thank you!