Having a weaning nightmare! *updated*

[bex]

I'm really struggling with weaning Niamh and i'm starting to hate feeding times.

Niamh has Pierre Robin Sequence. (most of you already know) She has a cleft of the hard and soft palate and her bottom jaw is small, which means her tongue has never come out of her mouth as it sits further back.

Anyway, i had to start weaning her at 17 weeks in preperation for her ops and now over 7 weeks down the line i don't feel we have made much progress.

She is still spitting most things back out. I sometimes think she's swallowed something then a few minutes later she'll spit it out or sneeze it out.

On the few occasions she has swallowed things she almost chokes/gags and goes bright red and stops breathing for a few seconds.

Its getting really stressful. I did start by doing baby led weaning but now i'm trying to give purees aswell as finger foods. The purees she spits out and the finger foods she gums on.

We are still on 1 meal a day of finger foods and some puree and one meal of finger foods.

I'm not sure if the problems are because of her age, as she isn't yet 6 months, or because her tongue movement is restricted, or because of her cleft palate? I've also wondered if she has a problem with swallowing?

I've been trying all week to get some help but not having much luck so was just wondering if anyone here has any ideas?

 

[alice&bump]

i think it might be somehting to do with her cleft palate,b ut i'm no expert!! my dad almost had an operation to take some of the soft palate bit out at the top of his mouth to help with his snoring and they said there was a chance drink and stuff could come up thru his nose. it could be completely different, so if i'm talking shit dont listen to me!! have you spoke to your HV/niamh's consultant? hope it gets sorted xx

 

[Mervs Mum]

Before they are about 6 months they have a tongue thrust reflex that means they push things out with their tongue automatically. She may still have that a bit plus her cleft I imagine exacerbates it. What does the cleft nurse suggest Becca? x

 

[bex]

Can't get in touch with the cleft nurse, she was out on visits. Going to try on monday.

The health visitor rang our dietician who thinks Niamh might have a problem with her gag reflex but the health visitor thinks it could be just that she isn't ready.

I've managed to get some help from a cleft forum and by the sounds of it, what i'm experiencing is normal! So i think i'll be suicidal by next summer when the last part of her palate will be fixed!!!!

 

[bex]

A little update. I'm so relieved that Niamh doesn't have anything wrong with her gag reflex, another thing to cross of the list.

The cleft nurse came to visit us yesterday and we now have a plan. The problems are because Niamhs cleft is so bad. So until her partial repair we have got to stick to foods with the consistency of milk because she physically isn't able to manipulate food in her mouth. Then hopefully at approx 9 months she might be able to cope with puree a bit thicker.
I'm a bit gutted as i wanted to do BLW but Niamh can't, so i've just got to adapt to what she can do.
Anyway we have done 2 meals with watery food and she swallowed it without choking and very little came down her nose. So am much happier.

 

[alice&bump]

thats fab hun! its a shame you cant do BLW, but as long as she's happy and getting her food!! would you be able to try BLW once she's had her op and its all healed??

 

[Mervs Mum]

Glad you have a plan babe x

 

[polo_princess]

Glad your making some progress hun