He covers his face and cries................

[Mouseface]

Hi

Been posting in SN & weaning too but thought you guys could help? My DS has been fed by tube - NG - since birth and I was just wondering if there was anyone who had weaned an NG/cleft/PRS/heart defect baby out there and actually done it? DS is 10 months old, under paed, CCN, CLAPA team, cleft nurse, SALT and HV (I have lots of teabags ready for the many visits!) but I ALWAYS get conflicting advice. Up until his emergency heart surgery, end Nov 2009, he ate really well, all things considered but has since stopped. And I mean stopped. He puts his hands over his face and cries when I try to offer food of any kind. I've tried games and making it fun etc but no joy. He had his soft palate repaired 4 weeks ago and ended up back in PICU, blood transfusion, resp failure again, the works!

No puree, spoons, cups, finger food etc aloud near him now as he gets far too upset. He doesn't even put his own fingers in his mouth, which he did do. He hates anyone touching his face, has severe reflux (always has) and gets VERY upset when I try to feed him solids. We did try cheesy puffs today, just to hold and he was ok but had no intention of putting them near his mouth.

Paed said leave it, he'll eat when he's ready. CLAPA team say keep trying, cleft nurse went AWOL! Been trying to wean for 29+ weeks so V soul destroying. I'M EXHAUSTED!! Any advice on how to get past this? At times there seems to be no light in my tunnel, can anyone help? No pressure anymore, I'm going with my DS's flow but advice welcome as I need all I can get from those in the field!!

I'm going to bump your message for you. Hope you get some tips today.

Thanks teaandcakeplease x

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Hiya,
my daughter has PRS. She's now three and is mainly unaffected by it. Her cleft repair was done was she was about 10 months old. I had PRS too and found it really helpful to moan to my mum about my struggle to get my daughter to eat, as went through it all with me!

it sounds like you're really been through the mill with your little boy. And I can completely appreciate the heartache you must be feeling as you struggle to feed him. As mums the one thing we're meant to be able to do is feed our babies, and if we can't how awful does it make us feel about ourselves as mums?

my little girl was only tube fed till she was 3 months old and then took to the bottle well (one of those medela special needs feeders). The cleft nurse was very nice and offered me emotional support but little in the way of practical weaning advice. She even advised against using the special needs feeder - my daughter would never have been able to get the NG tube had I not tried her with one of those!

I started to offer her solid foods when she was about five months old. I did baby lead weaning with my first child and I was keen to let her take as much control as possible over feeding considering her experience with the tube (god, I hated feeding her with that awful tube!). So I let her eat pretty much anything that I was eating. The whole works. she would get fed up of eating fairly quickly as lots of food went up her nasal cavity. She had a wide cleft of the hard and soft palate. Fortunately it was all repaired at one so when it was done, it was done. After the cleft repair I continued to let her feed herself. Actually, I had no choice as she refused to let me feed her at all! And it all just went from there.

I don't want to tell you what to do, but if my little girl resisted spoon feeding I'd never force it on her. I'd just let your baby feed himself. Give him things you feel happy with him eating - even if it's yoghurt and he feeds himself with his fingers and has a lovely time getting in a big mess, it doesn't matter. it's just important that he starts to associate food and eating with pleasure. Does he still have his NG tube in? If so, i guess you don't have to actually worry about how mcuh goes in.

i do think it's very normal for PRS/cleft babies to struggle a bit with food. he will get there though. It'll just require a lot of patience. I'm more than happy to chat about all this with further. x

Hey iamnotreallyhere

I hope you are! What a fab post, thank you. Yes, he's still tube fed and had the same, v wide hard and soft cleft. BUT today, for the very first time in sssooooooo many weeks, he let me put some food into his mouth from a spoon!! HHOOORRRAAAHHHHH!!!!!!!!!

It's really tough staying positive, especially as his cleft nurse is pants. She goes AWOL all the time!! But DS's CCN and paed consultant are both brilliant and I couldn't have got this far without them. I love that they keep me sane and pick me up when I'm crawling on the floor with sleep deprivation!! My DH has finally warmed to them too - huge help! He's not really involved in DS's "care" - I do all the tube changes, medical stuff, giving meds etc......

DS had a squeezy bottle when born but soon refused it and I was so gutted I couldn't BF him, I expressed my milk. Then we found out he has a cow's milk protien allergy so he's on Pepti Junior now. He is still gaining weight - amazing really given his severe reflux - and is a very happy little boy in general!!

I am not going to give in or stop and I think you are right, I think looking at him today, with his fingers and toys finally going near his mouth that I will let him lead me. I have planned to just put finger food infront of him tomorrow and see what happens. We'll have a picnic on his play mat and take it from there.

The other issue I face is he's a grade 4 intubation - was your daughter the same? And you? How did your mum cope? I'm so scared for him re future ops. He always ends up in PICU due to resp issues. It's so hard for them to maintian his airway. Did you go through the same with your DD? So scary!

You can always e-mail me at [email protected] save clogging up MN!!!