[LovenFire]

Humpy

Take your bub to the hospital. If he isn't taking in fluids, and he isn't eating, then it doesn't matter whether he is looking happy or not ... They will need to check out his bloods and his hydration levels and decide on treatment from there.

I don't have a reflux baby, but after three days of vomiting everything offered, solids or liquids and refusing feeds, I took my little one to emergency and he was admitting immediately for rehydration and so on.

Good luck, trust your instinct - if your bub isn't himself, and the paed seems to think that projectile vomiting and refusing to eat is ok because your bub seems happy, I would hoof it straight to emergency and get someone there to look at him.

Good luck.

[Humpty Dumpty]

Thank you Lovinfire. That's exactly my plan. If paed does nothing I'm taking him to ED. I can't afford him to stop feeding any longer. Even if he isnt dehydrated he is
Failure to thrive and only 6.8kgs so I can't risk him loosing any more weight.

[LovenFire]

How did you go Humpty? Is your LO okay? What did the Paed say?

[Humpty Dumpty]

Paed sent us to hospital and I had to push to be admitted but we are still in. They are monitoring his fluid intake and the feeding team is working on a plan to get weight on him. Had to fight through the people who were trying to tell me that he is fine and loosing 150g in 2 days is fine. Then the paed tried to tell me it was may fault he wasnt feeding well and I was dr shopping till I found something wrong with him. She also said the reason he wasnt growing was because he wasn't taking solids. The dietician said this wasnt true and he should be ok on milk till 9 months
So I feel like someone is actually working on a plan now. Just waiting to hear if we are in tonight or going home.

[lucky 2]

Hi, I'm glad to hear you are feeling like you are getting some of the care you need but I'm appalled that you could be accused of "Dr shopping" when your baby is unwell.
Keep telling them your concerns and I hope they listen, all the best.

[Humpty Dumpty]

Still feel like we are getting no where. Have reintroduced high cal formula under guidance of feeding team and he has started vomiting again. So feeding team suggested NG tube for continuous night feeds. I was delighted with this because we could take the pressure off and he can still get feeds in. But paed said no! I don't understand why. We have done this, we know he vomits it up. Why are we doing this again?? I offered him 100mls, he took 50 and vomited. It's not an issue
with volume. So frustrated!!

[Mumsyto2]

Still feel like we are getting no where. Have reintroduced high cal formula under guidance of feeding team and he has started vomiting again. So feeding team suggested NG tube for continuous night feeds. I was delighted with this because we could take the pressure off and he can still get feeds in. But paed said no! I don't understand why. We have done this, we know he vomits it up. Why are we doing this again?? I offered him 100mls, he took 50 and vomited. It's not an issue
with volume. So frustrated!!

I would have suggested the continuous feeds also.
One of mine was in this situation. Birth defects and surgery at birth but the reason they were in hospital for months after birth was actually due to the severe reflux not the surgeries if that makes sense, but it does all tie together.

Anyway we had great success with the continuous feeding, although mine was on it 24/7 rather than for overnight feeds for the majority of the time. It's done via the kangaroo pump and pretty handy and they are still fed orally but only if they a) can/will and b) will tolerate it. It's not much point giving them an oral feed only to have the whole lot come back up plus bile etc, better off just sticking to the continuous feeds only until you can move forward slowly.

I would question the sensibility of a NG tube for bolus feeds if severe reflux is at play as you will feed down only for it to rocket back up again so it does not achieve anything. The whole idea of the continous feeds is a drop every 30 sec (or whatever schedule is determined as best) so it absorbs etc and it makes it harder for any volume to be present at a time so limits the vomiting.

If your baby is under the care of a feeding team (and I imagine this would be at a major childrens hospital as we were) I would not imagine them allowing your baby to fade away. Our feeding team at Westmead Childrens was brilliant however I grant you there is always a huge tussle between the way they want to do things as opposed as to how the gastro or the surgeon or the paed want to do things - it's internal politics at its best. I realise you are frustrated with the situation but they will not just sit back and let your baby die and not try things which is what I have been reading from your posts. You also said you did not understand some decisions - did you ask? You need to understand, you are the parent, that is your responsibility and your job. If you don't understand ask 100 times in 100 different ways until you do. Accept that not everyone at the hospital is going to agree on the course forward all the time and accept that sometimes what they do is going to fail and then plan B is needed (trial and error) and there may also be a plan C, D and E and you will feel like it is a merry-go-round.

Also, don't get so hung up on the failure to thrive tag. We had it from birth until 18 months ago, so around 4.5/5 yrs (I can't recall at present and can't be bothered looking it up). It really is no biggie, it's just a medical term, it does not mean your baby will instantaneously drop dead. You seem to be in the right place now with a team of people helping you so that is what you need. You are going to be frustrated, it's a given in this process as it is a very hard journey and most likely it will often be one step forward, two steps back but you will receive help from the right people and one day you will exit the tunnel - it may be a short tunnel or a very long one (anticipate a long one and then you can only be pleasantly surprised). I hope you start making steps forward and wish you the best on this journey - good luck !!

ETA: When you are an outpatient again and if you are concerned between visits due to what you percieve as dehydration, listlessness etc don't hesitate to go in to the ED (make sure it's the same childrens hospital where the feeding team is located). They will check the hydration status of your baby and blood profile if they feel it is necessary and they will have the background information in the computer system. You may well go 100 times and be turned away 100 times being told there is no immediate concern and to continue with your routine scheduled visits and that's okay, you have only wasted time but better this than there being something wrong but you not bothering to take the baby as you don't feel they will do anything.

This post has been edited by Mumsyto2: 27/07/2012, 12:58 PM

[Humpty Dumpty]

Thank you mumsyto2. Your post was helpful. I didn't get to see the paed until this afternoon and I needed to ask her why she was stopping the NG tube when everyone else agreed it was an obvious next step. When I spoke to her and explained that as soon as the calories were increased he had started vomiting again and I wasn't happy going home when he just doing it all over again. I didn't want him to have to struggle through another week of vomiting and bottle aversion. So the paed agreed to the NG tube and continuous night feeds. Dietician has written up a plan for him in regards to calories and fluid. They are limiting him to 100 ml bottles so he doesn't vomit and supplementing the difference overnight. I'm so much happier with this.

I knew he wasnt going to fade away, but until today I didn't have an plan for DS at all. He gained 140g in a month and lost 200g in 2 days. He reduced his intake to 100mls a day but yet no one was taking it seriously. It's only since I have been here that I feel like people have listened and watched him and agreed its not right. I now have a feeding plan, new options and numbers to call of things go wrong. I feel like we are finally being monitored. Up to now everyone has been saying reflux, but we know his reflux is medically controlled (finally) and endoscopy and PH study showed no damage. So I'm hoping I can focus on getting some good growth and work on solids slowly while being monitored to make sure it's all working. I just wish the paed hasn't been so difficult o work with. Once I'm discharged tomorrow at least I can follow up with my private paed who I love.

Now to hope he manages the tube feed overnight so we can go home!

[LovenFire]

I'm glad your bub got the attention he needed, definitely agree To keep on returning to ED until you are satisfied with the car and have a solution to try at home.

Hope he managed the tube feed and you got to go home.