Any babies with gastrostomies out there?

[DonnaBallona]

Is anyone else feeding their baby/child solely by tube?

Jude is nil by mouth, even the water when he brushes his teeth could harm him if he swallows it. Anyone else in the same situation?

he is having his button or peg fitted this afternoon.

x

 

[kit10grl]

We haven't had a button fitted yet but DD was solely NG tube fed for a long time. We were told she would definitely need a gastrostomy by our SALT. However DH and I decided it was one more operation we were unwilling to put her through without absolutely trying to get her eating as hard as we could. We spent months working very hard to get her eating. She was born with a problem with her nasal bones that meant she couldn't breathe through her nose making eating and sucking impossible for her.

She started off only taking five mls of milk at a time. The most she has ever taken at a time is 80mls. We also pushed her very hard to eat solid food as we had read a lot of children with her condition who were given G-tubes continued to eat baby puree food until school age due to a complete oral aversion.

We have been fairly successful in that she eats three puree meals at stage 2 but chokes on anything chunkier and will take about a third of her milk volume orally in a day. Then we pass her tube at night to give her the rest of her milk while she sleeps.

We are being assessd next month again to see if they will make a final decision on the button. We hope the discharge us and let us continue as we are.

I know its not the same as your situation yet but we did a lot of research on the subject if you wanted to chat x

 

[DonnaBallona]

hi k1tgirl!

thanks for your reply. Jude and I have been in hospital in London for nearly 3 weeks now; they don't know if he has an abnormality with his anatomy or whether it's a neurological issue but he aspirated everything he eats. he was weaned and eating complete solids before and now he is nil by mouth- he suffered from recurring infections and terrible cough and they found everything he eats or drinks was going directly into his lungs.

we tried feeding him with an NG tube (he's had one before too, when he was a baby as was prem) but he kept pulling it out. he had 6 in 4 days and putting it back was so distressing for him. we knew that this is going to be a long term thing; there is a chance that Jude will never be able to eat or drink normally again-so we had no choice but to go ahead with the gastrostomy for him.

he is so much better than before, but he has a long road ahead of him.

I'm very concerned about the oral aversion thing; but at the moment I'm just glad they've found what the problem was. Jude is going onto full feeds through the tube today and he seems to be doing really well. he's gaining weight too which is very reassuring.

xx

 

[kit10grl]

Yes we had begun to have a lot of problems keeping an NG tube in during the day as Robyn would keep pulling it out. We had to have her in heavy mitts which was hampering her development as she wasn't getting a chance to find her hands. This is one of the reasons they had out us forward for the gastrostomy.

It definitely sounds like the best thing to get the gastrostomy as he could develop pneumonia from aspirating which would be very bad obviously. Everyone we spoke to when we were deciding said that if given a choice between G-tube or NG-tube they would pick the g-tube so im sure once you get a bit of experience with it you will be fine. Did he have a PEG or a button fitted?

with oral aversion there are a few things to keep on top of like teeth brushing etc or keeping toys like teether for older children in the house for him to keep stimulating his mouth wiithput the risk of swallowing.

 

[DonnaBallona]

Jude ended up having a 'mini' button fitted. it's really neat so far, although covered by the dressing. he's been in. a bit of pain since but nothing major, he's just needed a bit of calpol a few times. he's also been a bit dehydrated so he's had loads of IV fluids.

Jude was put in heavy mitts too, they completley bandaged both hands up but that was equally as bad because then he was bored AND miserable! I just felt like there was no other option for him. Jude's already had pneumonia once, and he has a collapsed lung that is being stubborn and won't reinflate. he also has lung damage from birth.

all in all, I'm hoping we've made the right decision but only time will well.
do you feed robyn purée orally or via tube? and do you feed her by pump or gravity?
xx

 

[kit10grl]

currently she takes puree orally but not enough to maintain her on just that alone. She is 13 months but eating stage 2 and stage 3 purees which are for babies 7-10 months so she is pretty far behind but it is progress so we are happy.

Only six months ago she was on a continuous pump feed 24 hours a day with about 30 mls of milk per hour only as that is all her stomach could tolerate without triggering severe exorcist style vomiting with her reflux.

When she is ill she reverts back to complete being NG fed. She just doesn't have the energy reserves to manage eating when she is unwell. She has rhinovirus at the moment but she has recovered much quicker than when she had it last winter so we are hoping illness wont be as big an issue for us this year.

The mini button was we had decided we wanted fitted if we have to go ahead with it. Our local hospital don't do that for an initial button insisting on having a PEG first then moving to a button 2 years later but I feel a PEG would just be far too limiting for her while we try to catch her up on her motor milestones which are already very delayed.

What are they feeding through the tube is it premade purees? A lot of people we have spoken to do a complete blenderized diet to feed. They make one meal and blenderise the childs portion and use things like coconut oil to add in extra calories if required. Might be worth discussing with your dietician as sometimes they can be reluctant to suggest it as its easier for them if the food is packaged up neatly.

 

[DonnaBallona]

Jude is just having high calorie formula through his button- pediasure. I'm not 100% sure what they are planning on doing further on down the line with food but I expect we'll find out at the doctors rounds tomorrow morning.

The mini button so far for us is working really well. he has got to have a really long tube attached at the moment whilst it's got the plaster over it but it's day 4 tomorrow so should be coming off. Then I can start attaching and taking the other one off when it's not needed- making things a bit safer; I'm constantly worried he's going to pull it out!

do you know why they insist on putting a peg on first? they assessed Jude here and worked out a plan as to what would suit his needs best- hence why he ended up with a mini button.

I'd never even heard of a gastrostomy 2 weeks ago! it's been a crazy fortnight. x

 

[kit10grl]

They insist on the PEG because the procedure is simpler than the one to initial fit a button. Its not a specialised childrens hospital here and we were told they could fit a button first if we got to a specialised hospital in either Aberdeen or Edinburgh, I think they thought that would put us off but we said we were happy to do that and they looked put out lol.

They will just be taking it slowly with his feeds I would assume to give his body time to adjust. It is crazy how quickly things happen sometimes. within the first two weeks of robyns life she had two trips to theatre plus multiple xrays MRIs and echos. plus an air ambulance transfer to another hospital for an open heart operation. its just a roller coaster. Like I said before though once things settle down and you get used to the procedures of feeding etc it will just become the norm for you and you wont even think about it. We got to the stage of being out with baby and her feeding pump and stuff and one of the doctors had said you make it look so easy to manage everything. Lol I was so thankful for that comment because I still felt complety incompetent and like everyone was staring at me and wondering what the hell I was doing lol