Posted by Gemma
on 6/4/2009, 12:26 pm, in reply to "More Feeding concerns"
90.210.1.176
Hi Donna
Im new to this site, but your post caught my eye and i felt i had to reply to you. I have a 7 week old son who ive just been told has pierre robin,it took till he was at least 3 weeks old for them to diagnose. Before that he was in and out of hospital and was losing weight fast. I tried all the bottles and teats i could find spending a fortune but nothing seemed to work, he still wasn't feeding properly, he was making all the noises but milk just wasnt going down. Some feeds i would manage to get 30mls down him and other times just 10 and that would take me up to an hour, but then give it half an hour and he would be wanting more as he was so hungry. I so desperately wanted to breast feed, even buying nipple shields to try but when he has the nipple in his mouth, he just doesn't know what to do with it. So at the moment he is having 30mls breast milk and 50mls SMA gold in every bottle, every 3-4 hours. Im having to express about 4 times a day, its boring and my nipples are hurting and sometimes i dont get much milk and other times i get loads, just remember that to produce milk, you have to drink lots of water, eat properly, try and get some decent sleep, and have lots of skin to skin time with your baby!!!
After having a tube fitted and staying in hospital for 2 weeks until he regained his birth weight and over, he is finally gaining weight like he should looking healthy and is more active! I use the large orthodontic, anti colic teats with the 9oz soft bottle that CLAPA gave me and they are the best ones so far. Every feed for him is different, sometimes he has 10mls and i have to put the rest down the tube and sometimes he can finish the whole bottle on his own. But i do know how you feel, and wanted you to know that im going through exactly the same thing. It is difficult but when my little boy looks at me and gives me that little smile which makes him get a dimple, it makes me forget about all the problems and focus on trying to get some solutions. As far as we know, we havent got another appointment with the plastic surgeon till september, so it looks like he's got the tube till then but its ok, because at least he's getting fed! I have to lay him on his side to sleep as when he lays on his back he gets very snuffly and has difficulty breathing. As for his chin and his tongue, they are slowly growing too. If you poke your tongue out at him, he tries to do the same, so encourage your little one to do it too, and over time you do notice a difference!!!
I know ive written an essay, but i havent spke about this with any other mothers whose children have the same problem, so its nice to tell someone about it and have them sympathise!!! If you want to chat then please feel free to email me!!!my email address is nuttygemma_2005@yahoo.co.uk. Hope i helped a little!
--Previous Message--
: Thanks everyone for your responses to my other
: post. I have more questions. Or maybe I
: just need some encouragement.
:
: These feeding issues make me feel so lost.
: It's so time consuming every day to find
: time to pump enough to increase my supply,
: try to feed Alana from the haberman bottle
: and, finish up what she doesn't eat through
: the g-tube.
:
: I'm so determined for her to eat completely
: by mouth so we can get this g-button out. Is
: this a realistic goal? They said it was our
: goal when we were discharged. I have no
: idea how long it's going to take for her to
: be able to eat completely by mouth though.
: Weeks? Months? She's getting 30ml now out
: of the haberman......a couple weeks ago she
: could only get 10ml or less. I wonder if
: there is something we could be doing to get
: better at this? Or does it just take
: time/growth. I haven't tried any other
: bottles except the haberman. And I'm so
: worried that she is getting enough to eat
: and is gaining weight. She is still so tiny
: and I want her to grow so her jaw will grow.
: But the docs say she will probably burn
: extra calories working hard to eat. And
: she's been spitting up a little bit too. Not
: sure if she is getting to much air while
: eating, or air while being fed through the
: g-button, or if it's reflux. Or maybe we are
: overfeeding her since she is not in control
: of how much she is eating?
:
: We do follow up next week with our ENT and
: SLP, so I will be asking the same things.
:
:
:
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