Where we’re at....

Another cut and paste. Sorry guys, I am just so tired!!

I am so over the whole thing. We are going to be in hospital for a while longer yet. Maybe another week? Possibly even longer than that.

So, since I last wrote I have seen the speech and language therapist. She was lovely, but not much help. She thinks the palate is high, but not too big a drama. She thinks that his suck is weak, but he is efficient enough to get the milk when he wants to. She doesn't think our issues are due to anything oral motor skills related. But she will keep working with us around the bottle aversion stuff. The thing is, Jackson just doesn't want to feed past 120-odd mls. How do you make a baby have an appetite?

They have decided not to redo the pH probe, or the gastric emptying scan. Not sure why though! I really want them to do the tests, and I don't understand why they keep changing their minds.

Today the paed said she wanted me to drop all semblance of a routine, and let Jackson feed on demand, and the amount he wants. Which means no more fussing with him. The no fussing is good, but the rest of the plan bites IMHO. Firstly, it means not waking him for his dream feed, which means he will start waking in the middle of the night (as if trying to sleep in the babies' ward isn't hard enough as it is), which means he'll probably get into bad habits. Secondly, I KNOW he will end up taking less feeds in the day because of this, given he barely ever displays hunger signs. And lastly, I just don't understand what they are trying to achieve. For him to increase his volume? If so, by how much? To increase his weight gain? Again, if so, how much is sufficient? What's our cut-off date? How much weight will he have to lose before they decide enough is enough? Their plan isn't practical in the real world, besides our routine was working really, really well. It's doomed to fail, but I just have to play the game.

I am really uspet, as for the first time, Jackson has actually started to lose weight. I respect that they don't know why and they can't seem to figure it out, but mucking around with strange theories isn't going to help him right now. We're almost certainly going to end up supplementing with an NG tube, which sucks but at least he will be getting adequate nutrition. And I am hoping that he may get used to having a fuller belly, and then will begin to take more on the bottle all by himself.

Sorry to rant and ramble, I just feel so completely lost and overwhelmed right now. Gah!!

Aw Laurie, how frustrating and heartbreaking. Still no answers and they want to undo all you have worked towards. Did you tell the paed about your concerns? Maybe you could write down all your questions to ask her next time she visits you? I know whenever I'm dealing with doctors I always forget to ask questions, I find them quite intimidating sometimes.
I really hope you get some answers and help soon
Forgot to mention that Isobelle almost never takes more than 110-120mls at each feed and often less.

Edited by Saffron

Oh Laurie, you poor thing  ...the whole experience sounds awful. Hugs to you.

Did you ask the paed whether it would be OK to continue with the dream feed, but feed on demand during the day and any other time of night he wakes up hungry? Surely that would be reasonable, and help keep him on track with his usual sleeping pattern at nights?  Or do they think he needs to feed more often during the night also?

Have they spoken to you about when he could start on solids, and whether that may help him to gain weight? If he has an aversion to the bottle he may enjoy eating solids from a spoon and trying out new tastes and textures etc, which will at least make feeding a little easier for you both - fingers crossed. ETA - sorry, didn't read your last post before posting this!  But take heart in the fact that it won't be too long before Jackson is ready for solids and he should enjoy them when he is ready. DS was of average weight and wouldn't have a bar of solids until over 6 months of age. And he's still the slowest eater in the world (takes 45 minutes to eat dinner each night) but does love his food.

I hope you get a good nights sleep tonight, take care.

 

Edited by kakapo

Big hugs Laurie - it must be such a hard situation to be in, when answers are not forthcoming! I just wanted to add one thought I had - from what I have heard, apparently some babies can be snackers (maybe due to smaller than normal stomach size), and they just can't take in as large a volume as expected, but do feed more often (although that doesn't really fit with Jackson not displaying hungry signs).....

We did have a baby in our coffee group that would snack all day (maybe 1-2 hours between feeds max), and just take small volumes each feed. He got to about 7-8months and suddenly started spacing out the feeds, and is now down to about 4 feeds during the day.

So that may be of no help at all! Just wanted to say take care, and it sounds like you need some more explaining from the paed and nurses etc.

Hi Laurie, I would suggest that you make a time to sit with the peadiatrican and go through eveything you've written above, just cause at rounds they are often distracted and using the time to teach the other doctors and I think you need a good amount of time to sit down and ask everything you want, and I think the Dr the will be able to take in everything that you are saying. I really don't think that it should need to get to the NG stage. Anyway you are his mum and you are with him 24/7 so if you aren't comfortable, talk to them about it.

Good Luck with everything

I agree, I think talking to the paed with a list of questions is a good idea, especially to get some idea of what their goals are for Jackson. Maya was hospitalised with failure to thrive at 9 mths and the goal was to get her gaining weight so she wasn't allowed to go home until she had 4 consecutive days with gains of more than 50g.

I really hope it doesn't get to the NG tube stage for you, but if it does, it's not really as horrible as it sounds. The hardest part is stopping bub pulling the tube out, when the gremlins had them in at 13 mths I had them tape the tubes all the way around the back of their necks so they were secure. Once the tubes were in it was pretty drama-free, they just put the feeds down the tube at regular intervals.

Big hugs from us up here, I hope this week is more productive for you and Jackson.

Oh Laurie . I wish someone had an answer for you, I have no idea how hard it must be for you coz even tho I've had three FTT babies, we knew the underlying cause with them. You can't really fix what you can't identify.

Best of luck over the next few weeks. Its a bugger he doesn't do solids coz I have a heap of tips on how to increase the calories in solids (mashed avocado in everything, tablespoons of milk free marg mashed into the veges etc.) but no idea when it comes to bottles.

When the gremlins needed fattening up they had them on Resource and Pediasure but they were a bit older (10-12 mths) and OK with dairy.

Hang in there, you're doing a great job in a really sh*tty situation and Jackson is lucky to have you in his corner fighting for him.