Preemies and Reflux

[DHime]

Okay so I noticed that many preemie babies have moderate to severe reflux.
My own Dear Son has severe reflux that has landed him in ICU twice since he was initially released from the NICU. He was put on Reglan with Zantac and it just didn't work. Now he is on stronger proton inhibitors and a low dose antibiotic therapy. An allergy to milk made his reflux even worse.
I learn all of this as I try to cope with the fear that I am doing something wrong or that I am totally failing at taking care of my son. Constant trips to the hospital when he refluxes and his heart rate slows to 60 is enough to age you 10 years a day.

I am starting this thread so any others with issues like this can bounce some ideas off one another. I sure hope we can all help one another...

 

[lgc]

Okay so I noticed that many preemie babies have moderate to severe reflux.
My own Dear Son has severe reflux that has landed him in ICU twice since he was initially released from the NICU. He was put on Reglan with Zantac and it just didn't work. Now he is on stronger proton inhibitors and a low dose antibiotic therapy. An allergy to milk made his reflux even worse.
I learn all of this as I try to cope with the fear that I am doing something wrong or that I am totally failing at taking care of my son. Constant trips to the hospital when he refluxes and his heart rate slows to 60 is enough to age you 10 years a day.

I am starting this thread so any others with issues like this can bounce some ideas off one another. I sure hope we can all help one another...

Hi there - I see from another post you're really having a tough time, so sorry - big hugs!

My little boy is also suffering from reflux - the silent kind, thankfully he's never ended up being re-admitted to hospital though, that must be so hard for you. Really hope his new meds regime works for you. I totally understand the guilt but none of this is your fault, it's a really difficult situation that's even harder to deal with when you're exhausted. I hope you're getting some support.

My lo's main problem has been that he hasn't been able to tolerate lying down AT ALL (starts refluxing within mins and ends up screaming in pain) for weeks now meaning we take it in turns to sit up with him. We switched to nutramigen formula 6 weeks ago, tried ranitidine for 3 weeks (took the edge off the pain only) and are now 2 weeks into trialling Omeprazole. I don't dare to jinx it but I think we're starting to see a difference and he's sleeping in his pram (raised up of course) for the second time today - he managed half and hour earlier, it's been 20 mins so far this time so fingers & toes crossed.

The Dr's think it's likely due to a cows milk protein allergy like your little one. I can't help wondering if he's still having some kind of intolerance even though he's on a hypoallergenic formula. About an hour after his feeds he starts squirming about a lot, sometimes even thrashing around and straining as if having difficulty digesting. He passes a lot of explosive sounding wind.

We're at the consultant again tomorrow - Im wondering whether I should be pushing for a new formula (e.g.neocate) as he may still have an intolerance or whether he just has an immature digestive system and he'll find any formula hard to digest. What do you think?

Thanks for starting the thread xx

 

[DHime]

I feel your pain on that one. My LO has major wind-breaking episodes too. My little Tristan has both silent and non silent. today they tried to thicken the feeds. didn't work. Since he has already had surgery once for the TEF repair, the next step is another surgery. If your LO gets to a certain point, you may have to face this as well. The receint changes are helping but not enough. He needs it to stop entirely due to scar tissue. Poor little man's heart rate dropped to 49 and he turned blue today. Then his hear rate kept dropping throughout the afternoon. Surgery is scheduled for Friday at this point. He will have a feeding tube for a while once again. (I hate this preemie tango dance... one step forward, two steps back...)

https://my.clevelandclinic.org/serv...ic_fundoplication_procedure_for_children.aspx

Also some tips I learned so far that may help:
1. Try feeding baby with him/her laying on the left side at a slight angle to promote the food to go down.
2. Have baby sleep on the left side
3. Keep baby upright for at least 30 minutes after feeding.
4. Using DR. Brown bottles
5. small feedings that are done more frequently
6. Switch to Goats' milk (not sure about this but it came recommended by some parents)
7. Keep baby at a 30 degree angle.

Any other ideas?
I am wondering if a pacifier helps or hinders....
Have you looked in to a sleeping wedge? You can get one on Amazon. It even has a harness to hold baby in place.

 

[JadeyB]

Hi there,

Sending you big hugs.

My little girl was also born at 30 weeks and she weighed 3lb 9.

She also has fairly bad reflux, but I feel we are starting to come out the other side now. She is 7 months.

She also had apnea spells and we found ourselves in and out of hospital for about 3 months. She also had bradycardias with it.

We got it under control to start with with a concoction of omeprazole, rantitadine, domperidone and gaviscon. She then started to go downhill again despite being on max doses of all meds.

Everyone was reluctant to change her milk as she was breastfeeding. After a trip to Southampton (our closest specialist unit) she was put on neocate and carobel and she has come on leaps and bounds and we've not been back to hospital (touch wood).

We use a 15 degree wedge and a snooze wrap. I believe positioning is key and keep her upright as much as possible.

She is also taking colic calm and probiotics which i feel help but she is only on omeprazole now so not the same concoction that she was on.

I agree with all of the above points. Although we also found playtex bottles to be really good (we didn't try dr browns).

Xx

 

[lgc]

I feel your pain on that one. My LO has major wind-breaking episodes too. My little Tristan has both silent and non silent. today they tried to thicken the feeds. didn't work. Since he has already had surgery once for the TEF repair, the next step is another surgery. If your LO gets to a certain point, you may have to face this as well. The receint changes are helping but not enough. He needs it to stop entirely due to scar tissue. Poor little man's heart rate dropped to 49 and he turned blue today. Then his hear rate kept dropping throughout the afternoon. Surgery is scheduled for Friday at this point. He will have a feeding tube for a while once again. (I hate this preemie tango dance... one step forward, two steps back...)

https://my.clevelandclinic.org/serv...ic_fundoplication_procedure_for_children.aspx

Also some tips I learned so far that may help:
1. Try feeding baby with him/her laying on the left side at a slight angle to promote the food to go down.
2. Have baby sleep on the left side
3. Keep baby upright for at least 30 minutes after feeding.
4. Using DR. Brown bottles
5. small feedings that are done more frequently
6. Switch to Goats' milk (not sure about this but it came recommended by some parents)
7. Keep baby at a 30 degree angle.

Any other ideas?
I am wondering if a pacifier helps or hinders....
Have you looked in to a sleeping wedge? You can get one on Amazon. It even has a harness to hold baby in place.

Thanks for the info. Gosh poor Tristan really is having a tough time. Hope everything goes ok with his surgery x x

 

[DHime]

Jady - Thanks. I also have the playtex bottles. airvent and bags. It is hard when they are so young to have so pain. Mine got an upper GI today. Results are due tomorrow. Sugery likely to be Monday.

I started feeling guilty for going home to sleep when all the other parents are camped out at the hospital. Did you go thru that?

 

[Agiboma]

Hi all,

My son a 25 weeker also had reflux that popped up when he was 38 weeks, we where just about to go prepare to be discharged then he coded and had to be resucitated. It was really really scary and heartwrenching so OP i can understand where you are coming from. We eventually went home on reflux meds, zantac and dom peridome, in a few months he outgrew the reflux and we discontinued his meds. So hopefully your son will also outgrow it soon.

 

[DHime]

I wish he would. Docs will be doing the surgery next week. He vomited today and nearly died due to the cereal they are now adding to his formula to thicken it. It took 4 nurses nearly a 2 minutes to bring him up again. All I could do was watch as my son turned blue all over. Scariest moment of my life.

I really hate this reflux crap.
Why does the answer have to involve surgery?
There should be support groups for this....

 

[Agiboma]

Sounds like you LO is going through a lot, sending positive energy your way. You can always come on here and let out how you feel we are here for you.

 

[DHime]

thanks.
well his surgery was today. he is resting now with tylenol and morphine at intervals. I am happy he came thru. now is the part where he recovers and we find out if it was worth all this. Oh God please let it have worked..... I can't bear much more of this. he is 3 months old now and I have had him at home for only 6 days total. I broke down multiple times the last 48 hours. Starting to wish I still smoked. or that the hospital had a bar. lol