[tri-med] Re: Trisomy baby continous fed

----- Original Message ----- 
From: "Kelly Rosberg"
>>How do you get them to change him over?

Hi Kelly,
Is your son on continuous feeds now? Or are you asking if he should go onto 
continuous feeds because he has pneumonia?

My son had a great deal of difficulty with feeding from birth, he just could 
not co-ordinate the suck swallow breathe. Initially he was tube fed but the 
staff in the nursery told me that he could not come home with the feeding 
tube so I pushed and finally had him on the breast using a very special 
nipple shield. The only problem was that I could not bring the nipple shield 
home and I could not buy one. Dumb idea from that lactation sister!!

So he came home and I persevered with breast feeding then I would supplement 
with a bottle of expressed breast milk. But it was all just so tiring for 
him, especially as he had mixed apneas and we just didn't realise.

As it got harder for him I would end up dribbling the milk into his mouth 
with an eye dropper just so that he would get the milk and not tire or 
aspirate it and then end up with pneumonia.

When he was 10 months old I fronted up to the hospital and said that I just 
wasn't leaving until the sorted out his breathing. Unfortunately in helping 
his breathing they destroyed what swallow he had.

When he was 14 months I gave up and asked that they place a feeding tube. I 
was really pressured not to because he was eating orally and gaining weight. 
the problem was that I was spending about 8 hours a day just getting enough 
calories into him.

Plus being a therapist myself I felt that it was a step backward. But it was 
just too much work for him and me. It had gotten to the stage that when he 
saw food he would scream blue murder because he just hated eating so much 
and I dreaded having to feed him.

Placing that feeding tube was the BEST thing I ever did for him with regards 
to eating. He had a fundoplication done at the same time and that really 
helped sort out the aspiration risk. He started gaining weight and with the 
pressure off him to spend half his life trying to eat he also began to 
advance developmentally as well. I mean how much can you learn when you 
spend most of your waking hours trying to eat? There is a whole world 
outside that high chair that needs to be explored..

Like someone else mentioned he developed a total aversion to food after it 
was placed but it was just Alex being smart. He knew how hard and how 
dangerous it was to eat, so when he had the choice he didn't. He certainly 
didn't miss it believe me.

I kept offering him food, and encouraging him to eat orally and finally when 
he was around 5 he did start to eat a few things (his favourite was Duncan 
Hines brownies which I had to get sent over especially from the US - they 
are still his favourite food but at least now he will eat brownies that I 
make :-)). By the time he started school he was eating orally again if the 
food was carefully prepared. (that is soft foods)

Alex will be 12 in a few weeks. Last night he sat down to corned beef and 
cabbage :-) AND asked for more. I still have to be careful with the texture 
of foods that he eats. (he choked about 10 times while eating that corned 
beef, meat is still very hard for him to eat).

Alex still has his feeding tube and we still use it on occasion but 
certainly not often. We could remove it but Alex is the one that doesn't 
want it to be taken out. Its a part of who he is and he is comfortable with 
that. Its the rest of us that have a problem not him. Most of his friends at 
school wouldn't even know that he had a feeding a tube. He has a Mic-Key 
button and unless he has his shirt off no one would know that it was there. 
It hasn't stopped him doing anything either. He has always slid down the 
slippery dip on his belly, gosh the kid even goes abseiling (I think the 
Americans call it rapelling?) and other than putting a piece of tape over 
the tube to stop it catching on the ropes it gets no special treatment.

I guess what I am trying to say is don't get hung up on what people think 
about eating. If its too hard to for our kids to eat it takes all the joy 
out of eating anyway. Plus health wise its much more important to get the 
nutrition and not end up with pneumonia.

I know its hard to give up that closeness you get from feeding, but you can 
still get that if you are creative about the tube feeding.

Having a feeding tube is not a permanent sentence either. Our kids set their 
own timetables and many will progress back to oral eating, some don't, but 
many do. And a lot of the oral eaters will get a feeding tube later in life 
as well. Let your son guide you on whats right for him. Its his timetable.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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