DD is getting a feeding tube :(

Justinlove

I know it is not the end of the world, but it is such fresh and unexpected news that I am still struggling with it.  We learned on Thrusday through a swallow study that DD is silently aspirating on every thickness of liquid and food.  It isn't much, but as you know, no aspiration is safe or appropriate.  The ironic part is that NOBODY thought this would be the findings.  In fact, the bigger suspect (and why we had the test done) was to see if food was creeping up into her nasal passage. 

She is in the hospital now with an NG tube (that is VERY difficult to keep in when you have a very curious 20 month old).  We have a great team of doctors that we have consulted with, and after much thought and consideration, she will be getting a G-tube on Monday.  We are going to meet with our GI today and discuss all the details including what type, etc.

The most frustrating part...she had really started to make progress with tongue movement in feeding and had become VERY interested in food.  We had been working so hard with feeding and had gotten her to gain soem good weight.  We were on the track to sucess.  Now, I just feel guilty eating in front of her   I know that this is just something that we are going to have to get over, since life is full of food, but....

At this time, I am really just venting.  Once I know more details, I'll be back asking for support from all my tube moms here.  Thanks for listening.

mskolman

Oh, I feel your pain. It is tough to not have your LO eat orally with you. My son hasn't really eaten much orally since he was born. Now we are trying to get rid of the feeding tube which is going to be a long road. Like you said though, it is not the end of the world. Carter has gained weight so well with the feeding tube and it has kept him safe and healthy. The feeding tube will serve it's purpose for awhile and hopefully everything will work itself out.

Good luck to you! 

KYmama9286

I'm so sorry you got this difficult news *hugs* My DS has Russell Silver Syndrome which I know has some similarities to your DD dx-- a feeding tube is our biggest fear as well and I know how devastated I would be to get that news-- but on the upside I know alot of other RSS moms who have LO's w/ a variety of feeding tubes and they all say it really took away so much of the feeding stress they were having, their LO's are gaining and growing beautifully and in the end thats what we all want for our kiddos. Is she going to continue in her feeding therapy to help her still work on those muscles or does her aspirating so much mean she cant work on eating at all? I really am just so bummed for you :-( But try and remember this is just one step, its not something thats permanent its just another season in your DD's growth and development. Feel free to PM me if you ever need to chat/vent!

Assembly_Reqd

{{BIG GIANT HUGS}}

btw: I love the new siggy pic. The pigtails are super cute!

SaucySarie

I'm so sorry you have to go through all of that when it seemed like you were making progress. One of my DD's has a g-tube and it was the best thing we could have done for her. It helped her gain weight and actually BE ON the growth chart for her age. It seems like a lot to deal with, but it works out. Will your DD be able to do thickened things? If so maybe you can continue with some feeding by mouth and supplement the rest through her tube.

TriciaJoy

my heart goes out to you. It was a very emotional thing for me. I think we have a lot of emotions tied into feeding. As mothers, we are hard wired to nourish our children, and to see it go another way.. it's hard.

My son has had a G-tube since he was 10 months old (he's now 28 months) and I still have a love/hate relationship with it. It was definitely needed. And when we got it, it was a relief. A relief that came with a giant dose of guilt, too.. but still a relief.
We are now working on weaning. We're down to just water in the tube.. it's hard, too. I can't tell you how many times I want to go in there and tube him a bunch of calories. Yet again, you want to nourish your child..

In the grand scheme of special needs, a G-Tube is low on the scale, but that doesn't mean it's not traumatic. 

Hang in there, momma. And let us know if/when you have questions.

Falioley

I get it. I was so disheartened when I found out that Dean was going to need a tube. For some reason, it's just really hard. But like the others said, it takes away so much stress of eating. But still, hard. Good luck with the surgery tomorrow and keep us posted.

Justinlove

Thanks y'all!  I am doing much better with it today, but I think it is going to be really hard to see that tube coming out of her belly tomorrow. 

I think one of the reasons it is so hard is that we are very food driven world and the thought that food is "off limits" for my daughter is hard to get my head around.  She will continue feeding therapy, but only to continue to work on oral motor skills and introduce "taste" since she is literally aspirating on even thick purees.  They are going to check to see if she has a cleft larynx when she is sedated, but the ENT does not think she does. 

The surgery is at 1 tomorrow...so we would appreciate any extra T&Ps you can send LA's way!! 

 

single_mama1991

I know it's hard when I found out my DS was getting a Trach AND G-tube I didn't know what to do with myself. But think of it this way she'll be fed gain the weight she's supposed to and with those nutrients she'll get better and be able to eat orally.

I've gotten pretty used to it but lately i've been thinking of when he gets to her age and wants to eat what other people are eating. But my T&P's are going your way.