WWYD Oral Aversion Down's Syndrome

[momuveight2B]

I'll try not to be too long. My son was born seven weeks ago with Down's Syndrome and other medical problems. He spent three weeks in NICU, alot of that time on an NG tube and has since had it put back in for another three weeks and will be in I believe until we do surgery for a Mic Key button on the 20th.

He is refusing bottles completely, cannot latch properly to breastfeed or stay on the breast long enough to get his nutrition there.

He is on breastmilk because I have been pumping but getting super worn out.

Will go to breast for comfort but mostly sleeps there.

So now it looks like we are going to a button for feeding for who knows how long.

I am exhausted in more ways then I can even begin to describe. Our early intervention people have been less than helpful. We have been getting super help and support from our doctors but at this point the consensus is feed the baby any way you have to but get him fed.

He is thriving on breastmilk, no signs of allergies or intolerance.

So if anyone has experience or opinion should I work on breastfeeding more when he is finished with his surgery or focus on the bottles again? He is unlikely to get much milk either way and I will still have to pump.

I don't have time to focus on both. I have tried and have been getting by for weeks with very little sleep. He is also too tired to work on both.

Any ideas? Before he was born my plan was to CLW. I am a SAHM and have never had any use for a bottle. It may be necessary for him though to continue to work with one.

So far he has had an upper GI and it is normal. We have more tests next week.

[thismama]

s I have no idea. I would link to this thread in the Special Needs forum, too, though. The more knowledgeable mamas, the better!

You being happy and getting enough sleep are a primary factor in this, as well as of course getting nutrition into your little one in the best way that is doable.

[Breastfeeding Insomniac]

Are you working w/ an LC? If so, have they been helpful? If not, maybe you can find another one. Also contact your local La Leche League, and ask their advice, I believe they have a pamphlet on bf a baby w/ down syndrome, but maybe they also know some local moms who have babies w/ downs that can help you.

Here is some info I found:
http://www.llli.org/FAQ/down.html
http://www.healthedco.com/storefront...83&itm_index=3
http://www.breastfeed-essentials.com/downsyndrome.html
http://www.breastfeeding.asn.au/bfinfo/down.html

Lots of info here:
http://www.kellymom.com/babyconcerns/down-syndrome.html

[momuveight2B]

There are a lot of pieces to this. He is on home O2 and also needs to be suctioned throughout the day so that adds to the oral aversion; I don't want anything near my face thing. Just came out of the hospital for a sinus infection. His whole face seems to be held together with tape to keep all his tubing in place. It is miserable and we are trying to get him off stuff so he can experience life without his face being messed with KWIM.

LCs say to keep putting him to breast and that his tone may improve. LLL says the same. However no one can tell me when or if he will ever be strong enough to effectively nurse or even use a bottle.

He was doing OK with the bottle for awhile but not able to gain enough weight so had to have the NG tube put back in. He has to eat and that seems to be the only way now.

The O2 keeps his airways constantly dry, sollen and irriatated but he has to breathe. We do humidify all the time. His airways are very small and floppy anyways.

He is hard to wake and does not cry to eat. He would sleep all day and night if I let him.

So the button surgery will allow a better way for him to eat and get the tube out of his nose and then hopefully soon after we can also wean off O2 but then we have to find a way to keep working with him orally so that at least some of his eating is coming that way. He also needs the stimulation and satisfaction of sucking.

[Mamato3wild ponnie]

Big huggs to you for working so hard at everything..i think the best thing right now is pumping to keep your milk supply up and lots of skin to skin with your baby. Having a downs baby is truley a gift from God...you can do this and come out on top. Ask your LC about a Haberman feeder...it's made by Medela and works great sometimes on babies who have difficulty with suck swallow. Hold baby as much as you can on your bare chest and let him smell you and your milk...getting him to the breast may take time...hold him STS for up to 6-8 hours a day. It works...keep up the wonderful job.

[Breastfeeding Insomniac]

Where are you located? Would you like me to see if I can find an LC in your area who has experience w/ your situation? It is not a problem at all for me, and I would be happy to help a mama as dedicated as you

[mama-a-llama]

That's great that you're going to get the button--it will make things easier, at least it did for us. You're right that getting stuff off his face is important, although I don't know for sure if it was the NG or the severe reflux that caused my son's horrible oral aversion.

If you're happy offering the breast for comfort still while pumping and bottlefeeding, that would probably be what I'd do. However that's coming for my perspective, where we were working SO hard at keeping him nursing, while pumping and tube feeding, and I feel now that maybe we pushed it too far and I wish we could have just enjoyed nursing without the pressure.

On the other hand, maybe tell yourself that after surgery you'll try working on nursing for a set amount of time, and after that just switch to doing bottles.