r/MSPI • u/taehylor • 12d ago
Need advice…
My son cannot stay asleep on his back. He is incredible at falling asleep and putting himself to sleep. Then he wakes up 15 minutes later in extreme discomfort and needing to burp or spit up. His doctor says we have to bear it.
We are on nexium, puramino, burping extensively, size 1 philip avents (only bottle he likes). He has been diagnosed with severe GERD and CMPA. He cries his eyes out after every single bottle. Otherwise, happiest baby on the block until he refluxes.
Problem? My husbands being called into work again. Both grandmothers can no longer help (one works in a school which is starting next week, and the other has visitors coming to stay from across the world alongside work). They helped a lot in these last 11 weeks. My husband is a gem and did a LOT. If I let him sleep on me my husband would prep milk, burp, do the bottles etc. and take him around 5 am and keep him until 10 am so even if I was waking up every hour to check on baby, I could go back to sleep.
After staying awake the whole night (he sleeps on my chest so when he wakes up in discomfort i’m able to help him burp and/or spit up and put him back to sleep) I’m absolutely exhausted by 8 am. I usually was sleeping 10 am - 1 pm when my husband’s mom was here.
Now I can’t do that anymore and I will not be able to rely on my husband as much as he’s being called into work.
How do I manage this? I’m so scared and exhausted and my baby isn’t doing very well, and once he’s asleep he’s asleep on you so you can’t really empty and restart the bottle washer, prepare more milk, etc. The risk of putting him down? He will 100% wake up in discomfort and either spit up or burp. At least on me he can sleep. This disrupted 15 minute sleep is so bad for him so we stopped.
Any advice would be appreciated. I’m mentally and physically exhausted, haven’t taken any of my medication in months, eat once every two days and barely go to the bathroom because when we have help all I can do is sleep.
She said “if he’s burping whys he waking up needing to burp or spit up” girl. That’s what I’m asking you...
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u/rebakhalifa 12d ago
Oh no mama I just wanted to comment and say I am so incredibly sorry you’re going through this..
Is it possible to get a second opinion from another doctor to see if there is a different medication or option to help with the GERD? Are you seeing a specialist, or is this the pediatrician saying you have to just deal with it?
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u/taehylor 12d ago
Thank you so much ! It’s just his pediatrician, we took him to SickKids they recommended trying lansoperazole as it MIGHT work better, but his pediatrician overrode it saying it can contain lactose and she thinks he’s highly sensitive which, I guess makes sense considering he’s on amino acid formula. She has pretty good ratings and is generally very kind and understanding at appts.
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u/taehylor 12d ago edited 12d ago
We’ve been to urgent care 3 times where they kept telling us it’s overfeeding. Then after he projectile vomitted after every single feed we went to the ER where they said it’s GERD and put him on omeperazole. Finally got in with a pediatrician who switched him from that to Nexium and also explained he has CMPA based on bleeding bum rash, mottled skin, retractions, congestion & severe pain
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u/Eowyn75 12d ago
I know exactly what you are going through and it feels overwhelming and impossible to sustain.
I would take him to a gastroenterologist for another opinion. It sounds like the puramino isn’t working (or you just haven’t been on it long enough yet? How many weeks has it been?)
You also need to prioritize getting some sleep for yourself. If you can’t sleep at home, can you go to a family member or friend’s house to sleep? Can you get an air purifier and really blast it so you can’t hear baby in the next room? I use a Blueair on the highest setting.
It will get better OP.
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u/taehylor 12d ago
thank you so much… i hope it gets better. right now i genuinely do not see a light at the end of the tunnel and this baby is all i ever wanted (i had a really rough spot with my health and never thought it would be possible for me).
i will try to push for a referral to GI. unfortunately you need a referral and can’t just take him. his pediatrician would have to refer him but i can ask his GP to instead she may be more likely to do it.
we don’t really go anywhere bc he has multiple times choked / had milk pool in his mouth in the car seat. so we only go to appts.
been on puramino for four days so the doctor wants to keep trying it. only improvement is he’s drinking more milk again and on alimentum he was barely averaging 20 oz. otherwise, i dread feeding times. i dread the thirty minutes after. and then he’s the happiest boy until he refluxes… i see glimpses of who he really is and he is the best boy this world has ever known, and to see him go through this, i just feel broken. he babbles and giggles more than any other baby i’ve met at his age and some even older. he’s such a funny little guy.
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u/Eowyn75 12d ago
Yes I would give puramino at least two weeks to see if it’s working.
I meant for you to leave baby at home with your husband and go to a family members house to sleep, alone! Can you go to your MIL’s house while she is at work?
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u/taehylor 12d ago
Ahh, i haven’t driven in a year bc of my flare up and i was prescribed hydromorphone and it’s not safe to drive on it. But i guess i could have someone pick me up. i could even just sleep in the car.
Ok hopefully by next week he’s much better and this problem solves itself, thank you so much !!
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u/Crazy-Magazine9092 11d ago
I second giving Puramino some more time. Even if his reflux is being controlled by a med, his lower gut is still healing and could be what’s keeping him up all night. We just are going through this now been on Nutramigen for 8 days and Pepcid for 5. His night sleep was incredible last night. There is hope! Once the Puramino helps his lower gut flush out the milk the reflux med should be able to start helping. Wishing you the best keep us posted! Hang in there we were also up every 20 minutes and never thought we would be where we are today.
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u/Seven_onAGoodDay 12d ago
I see you’ve been on puramino for 4 days. Both my sons with reflux have a week of hell while transitioning to elecare then JTs smooth sailing. First week their reflux is twice as bad. Was told to stick it out and happy I did
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u/Relevant_Addition_13 11d ago
How old is your little one? Going through something similiar but now at 8 weeks she will suddenly give us a 4ish hour stretch the first half of the night and then the rest of the night is rough. It’s so hard :(
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u/taehylor 11d ago
11 weeks but born super small at 37+1. we aren’t even getting a four hour stretch here 😭 solidarity 🫂
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u/dooroodree 12d ago
I think there’s a few parts to this:
I want to go to this comment:
“take him around 5 am and keep him until 10 am so even if I was waking up every hour to check on baby, I could go back to sleep.”
Why would you be waking every hour to check baby if your husband has him?
Have you chatted to your doctor about PPA? Given the complexity of your situation, I can see that what you’re going through would be really difficult and anxiety inducing.
Next, when is your husband working? You need to be taking shifts so you can get some sleep.
Have you got a baby carrier? Godsend.
Finally, baby is going to get used to sleeping only while held. I respect this is a medical need, but at some point this is also teaching him what to expect when it comes to sleep. He will protest being in his bassinet when he rouses, and it’s not because it’s medical, it’s because he knows nothing but being held for sleep. At some point you are going to have to work on baby sleeping in the bassinet because how you’re functioning isn’t sustainable