Mar 6, 2009

Who doesn't like food????


The other morning I had a dream that Mia’s feeding tube came out and she magically started taking a bottle. I woke up the happiest mommy alive! Finally no tube, finally no medical equipment, finally no gagging around the clock.

My dream came true, maybe not in the fashion I was hoping, but it did come true. One week ago she wouldn’t stop gagging, even after throwing up her entire feed. Reluctantly I pulled the tube and she fell fast asleep. I had the go ahead to feed her by mouth and not worry about getting in the volume. The plan was to teach her that she had to eat in order to make that feeling in her tummy go away. I woke up at 6:30 ultra groggy because I logged in about two hours of sleep. I prepared her bottle and to my surprise...she started to drink it up. Maybe the desire to eat is increased when you don't have a tube going down your throat. Over the next two hours she drank down 60 cc’s. I couldn’t believe it- I was elated. Over the course of the day she averaged about 30 cc’s a feed which is NOT ENOUGH. She was still drooly so they told me to keep going. They aren't worried about her weight, but didn't want her to get dehydrated. I took her for a blood draw the day before and one of her labs came back with one level showing she was borderline dehydrated. I had to put the tube back in- AAARRRGGHHHH.

The problem: Her stomach is not used to any volume whatsoever. Her dose is spread over an hour. Babies generally take twenty minutes or so to eat. I think once the rate is where it needs to be she will be sucessful at taking a bottle. When she drank 15 cc’s in 3 minutes her tummy was maxed out, because it isn’t used to taking so much so fast. big sigh.

Since her trial her stomach must have gone down in size so now her feeds are going in slower than previously. I guess I will slowly climb up in rate again- it is so difficult to back track!

If anyone has any ideas about teaching hunger let me know- I am desperate. Mom's of peemies.. Are you out there? ANYONE? We do have a feeding therapist- but I am looking for the magic recipe. Easy button please!


Mia does love sitting in her highchair with us at meal time. She is very observant and watches us all eat, but when I present her with something to eat her lips are glued shut. She does like frosting, but a frosting diet could only last so long.

* A huge thank you to everyone who visited Gracie's blog.



19 comments:

Sarah said...

Such a cute picture of Mia! I wish I had advice, but I know nothing. Hang in there, Mimi, I am sure it will all come together... and hopefully sooner than later!

Jen Faultner said...

Ok here comes the dump truck.....

Zoe's feeding therapist was passionate about feeding tube kids the way a normal baby eats......during the day. That way they have to take in their volume during the daytime hours and not at night creating hunger at appropriate times. She felt that even if she had to eat every 2 hours during the day in order to get the volume she shouldn't be fed through the tube at night. Ever. She very gradually increased feed volume as Zoe could handle it and we always started a feeding with a chance to oral feed BEFORE the tube feed was started. We also were told to warm her milk before putting it in the tube to reduce the gagging/vomiting.

One other therapist advised attempting bottle feeding as the tube feeding was pumping in so she equated the feeling of her stomach filling with the bottle or breast. That didn't work so well for Zoe because she was so sensitive to overfilling but it must work with some kids.

Trying to get your kid to eat SUCKS and I found it sometimes made me feel like a failure as a mom (what mom can't get their kid to EAT!?). Keep up the good work and keep trying new things....you'll eventually get it. Zoe finally got off the tube during one of her hospital stays because she was on an IV so I had 4 days to let her ride the storm without worrying about her getting dehydrated. It took her more than 48 hours to get the hang of it but taking the tube out was the answer for her and was the second time she was on the tube long-term. Tubes make a person not want to eat....imagine that.

Brimaca said...

That picture is the cutest pic ever! She is a doll. I have no idea on the feeding thing. So sorry.

The Hands said...

I had a tube feeding baby when we came home from the hospital. Don't give up! Keep going. I wasn't really encouraged a whole lot to try to bottle, but I was determined to get my girl drinking on her own. In fact, we even had a g-tube placed before we left the hospital thinking that Natalie wasn't going to be taking anything on her own in a long time.

This is how I did it. We had tried putting in the tube feeding faster to increase her stomach size, but I ended up just giving her a bottle first and then putting the rest down the tube as she would tolerate it. If you put the feeding in by gravity (talk to your tube feeding team about how), then you can tell when her little tummy is full...it just doesn't go down anymore. I found that if I waited a little bit or burped her, I could get more down then. Don't underestimate what a good ol' burp will do. It does wonders for stomach size! Don't feel discouraged if she doesn't take the same amount every time. Lets face it; who eats the same amount of food at every meal?! The longer you keep going inbetween every meal, the more hungry she will get and she will take more.

I'm so excited that Mia is starting to take her bottle. Her pictures show that she looks so good! Keep working at it. The whole process of putting your baby onto the bottle is tiring, time consuming and creates a lot more dirty dishes, but it's worth it in the long run.
Angie

Brenda said...

I love that picture of her! She looks so happy and healthy. I wish I had feeding advice, but I don't. I think it's just gonna take practice and patience. She'll get it! :)

Talia said...

I have the same advice as Zoe's mom. When we were in Seattle working with oy/pt she said offer her breast or bottle so she knows what she's "supposed" to do to get full. Tjat actually worked for Sophia.

Abbie said...

I wish I had advice but I don't. I just had to comment on how cute Mia is!! Mia, you're adorable!

The Simmons Family said...

Owen never took the bottle. He eats everything in sight, but runs out of energy. Our Feeding therapist said we'll work on hunger training as soon as he has energy to drink more than 1oz at a time from his cup.

It's frustrating and there is no easy way... unfortunatly. Just keep trying!! I'd try to get her down to 30min boluses. We're still on one hour drips or else Owen pukes... bummer.

We'll have to get a Gtube one of these days... he's always had an NG. When he's not so fragile, probably after transplant.. we'll have to go with the NG.

I can give you advice regarding regular foods. Offer her anything and everything to chew on. Owen wouldn't put anything in his mouth, then we tried biter bisquits, nuk brushes, spoons, vibrating toothbrush... he started wanting any kind of food that he could hold and munch on. Now he eats a variety of food that I am more than envious of. Kamryn wouldn't have eaten 1/4 of what he eats. It's amazing.

GOOD LUCK... keep up the good work.

Jennifer said...

Oh lady, you'll get there. Even that much progress is huge! Now you really know she can do it. It's just a matter of time and slow growth and she'll be off that tube for good!

Emily said...

How I wish I couldn't relate to your frustrations! My daughter was/is tube fed. She spent 8mos in the NICU and was trached and vented for a year. She would learn to eat then become critically ill again, paralyzed, etc and then every time she'd get healthy enough to eat again she'd have to re-learn the skill and each time she'd take less and less food from the bottle.

We chose to get a g-tube which for us was the best decision ever. The NG tube was so painful for her that she never wanted to eat, even without it in her mouth. It seemed to make her throat sore and we knew that if she was going to need the tube more than a couple of months we wanted to get the button. It's been a life saver for us and it allowed me to finally see her face which as you know is priceless.

We have tried many different feeding techniques (eating orally throughout the day and making up the calories needed with a continuous feed at night, bolus feeds every 3-4hrs over 10-20min, continuous feeds 24/7 through a g-button and then also through a j-button, you name it, we've tried it). Unfortunately there was no way of feeding her that made her suddenly open her mouth and start scarfing down food. I personally liked feeding her breakfast/lunch/snack/dinner/midnight snack. While she was getting her tube feeds we'd hide her pump under the high chair and feed her orally. Always at the table with the family.

We've had about 4 different feeding therapists and we learned from the get go that we were going to need to be pretty intense about the feeding thing. She saw a therapist 1hr two times a week and she used the SOS method. We basically had to re-train my daughter that food was good, how to eat and then encourage her to increase her volume.

If you're not seeing progress, talk to your therapist and get a second opinion! We made the mistake of sticking with our original therapist for way too long and when I eventually went for a second opinion I was amazed at the new therapist's wealth of knowledge.

As I'm sure you know it's a slow process. Look for the little signs of progress because otherwise it's just depressing. By the time my daughter was 2yrs old she was finally enjoying food and eating measurable amounts. By the time she was about to turn 3yrs old she was eating like a normal toddler. Unfortunately she has a lot of medical problems that make weight gain with a normal toddler diet next to impossible as she needs about 1800 calories a day. We then recently learned that her lung problems are exacerbated by her recently discovered aspiration and she's now NPO. We don't know when/if we'll get rid of the tube but we made amazing progress and had actually stopped feeding therapy because she was eating so well just before she was made NPO.

Good luck to you guys! She is such an amazing little girl.

Matt and Krachel said...

I learned about Gracie after catching up on your blog a couple of nights ago. Then I found out the news - and my heart is empty. Thank you for sharing both your own personal story - as well as the stories of those who are going through such difficult times as those similar to yours.

My heart goes out to the Gledhills - and on that note I'm happy to hear that Mia is (overall) doing so well.

Krachel (Whiting)

Kaidence's Mommy said...

If you do find an easy button will you PLEASE let me know? We are more than a year out since passing our swallow study and still are fighting this feeding issue. Currently she is getting a feed on the pump and my hubby and I are taking bets as to how far into she will get before she pukes...

MFA Mama said...

You're right about the rate--you've got to work toward getting the bolus feeds into her at the same rate as she'd take them by bottle, and the same volume (my youngest was on an NG tube for three months then a g-tube, which he still has, although I had him doing full oral intake for six months at one point). The overnight feeds have got to go, too, for her to feel hungry enough during the day. My son's issue is gastrointestinal/allergy-related, but since Mia is CAPABLE of actually eating you can probably succeed, here. The other thing I'd consider is seeing if you can give her Tylenol (the NG tubes irritate their nose and throat) or something for pain/inflammation around the clock for a day or two, and see if that helps get her over the inflammation from the tube (it's a vicious cycle--their nose and throat hurt, so they don't eat when you take the tube out, so you have to put it back...). The other thing you might consider, which I don't think you're quite there YET, but if this continues, is just asking them to consider a g-tube so her nose and throat can heal. I know, I know, it's surgery, but not bad as far as those go, and when you're done with it you can just pull the button out and the hole closes right up on its own. We finally got the button for my son because he pulled his tube any chance he got, it was destroying his poor little nose, and I couldn't let him have his hands free, which was impacting his development. People tend to fear the g-tube, but really I think it's more humane if you're looking at long-term supplementation via tube. Feel free to e-mail me if you have any questions and good luck!

I heart Max! said...

I miss my little girl!!!!! She is so cute. It breaks my heart to know I won't be seeing her on my days off anymore. She will get the food thing eventually! Its in her genes!

Tammy and Chris said...

Ahh, she is so cute!

Shila said...

Is that Mia? There is no way to tell that she is a heart baby. She looks so happy and vibrant. I love that there are no tubes whatsoever in this picture! It is so exciting to hear that she was hungry! Things keep getting better, go Mia!

Shelley Eggett said...

Oh I love that baby! More pictures please, I miss her!

Stephanie M Larsen said...

What a great mommy you are Mimi. Just wanted to say hello. I can imagine how heart sinking that must be to backtrack but it's great that your looking for ideas, and staying positive. I love that picture, it's the one I have at the top of my blog right now too. She's such a cutie!

Rachel said...

I have no advice on the feeding situation, but I have to comment on this ABSOLUTELY ADORABLE picture of Mia! She is just so cute I want to squeeze those big cheeks. And her hair is back and cuter than ever! Good luck with the feedings. I so wish I had the easy button for you on this one.