Monday, July 26, 2010

so frustrating

UPDATE: Just to answer the "why not 'on the go'" question: Jonah will throw up if we don't get the blended mixture (about 5-6 oz of food with 3 oz of formula) to a thick pudding consistency. It can't be pumped, but has to be pushed at a rate of 10 cc's every 2 minutes. Given the fact that it has to be blended, pushed at such a slow and continuous rate, and just the fact that it's a MEGA mess (think green and purple goo flying up and hitting the ceiling as you try to shake/push out air bubbles), it's just not conducive to "on the go" feedings. The only place I'll feed him is a kitchen where I have access to a microwave (for thawing blended cubes), electricity (for mixing in the Magic Bullet), and a sink (for clean-up). Thanks for the thought though. If only it were as easy as Pediasure in a back-pack pump. Unfortunately for us, that means PUKE CITY.
_______________
Jonah continues to NOT eat. We had our evaluation today by a speech pathologist, and basically, it boils down to this:

- Speech can't work with him on the tongue thrusting thing if HE WON'T EVEN OPEN HIS MOUTH.
- Speech can't do much if he's refusing all together and has a psychological issue, not a physical issue.
- He definitely has a psychological issue (in my opinion).
- Kids Eat will only see him in their environment, not his, so his eating is not representative of how it is daily for us.
- It will be three more months before Kids Eat will see us again. In the one and a half months (ish) since we've seen them, he's regressed A TON.
- The OT who we need to work with will not have openings until the Fall.
- Even then, I'm not sure what we'll be able to do for him.
- We will soon be getting an evaluation from a psychologist to determine what I already know.
- The psychologists only do evaluations, not therapies for feeding.

What does this mean for Mommy, Daddy, and Jonah?

- Continued one step forward, five steps back.
- Mommy's getting more frustrated, Jonah's getting more frustrated, Mommy's getting more frustrated and so on and so forth.
- We don't even have a chance to get out of the house until 2:30 (you know, the hottest part of the day) because we do feeding, bath, dressing change, nap, and another feeding before we have "unscheduled" time.
- We can't make any morning trips anywhere.
- We can't go anywhere for more than a two hour period.
- We can't meet anyone for lunch.
- We can't feed in public or be anywhere other than home (or a home where we feel comfortable hauling a huge bag of food and supplies) for feedings.
- If we go out when Matt gets home, we have to be home by 6:30 to feed him. That gives us about an hour to get out and do anything as a family.
- Feedings take an hour because we can only do water/food through the tube at a slow rate.

- Jonah's aversion to sitting in his high chair is growing.
- Mommy's aversion to trying to keep him content and entertained in his high chair for at least three hours a day is growing.

I can't begin to explain how incredibly frustrating these kinds of feeding issues are. You only get it if you've been there. Just take my word for it. I tell people all the time that I can handle the blister popping and bandage changes, but the feeding stuff is going to SEND ME OVER THE EDGE.

Knowing that your child cannot (or won't) do such a basic and supposedly inherent thing and knowing that you, as his mother and primary caregiver, can't help him down that road... knowing that this takes him one step farther from "normal"... knowing that he is missing out on all kinds of normal childhood experiences and activities because he can't eat/be fed outside of our house... AAAGGGHHH!

Please pray. I'm so out of ideas, I don't even know what to do. And it doesn't seem like anyone knows what to do to help us. It's so very isolating. While my friends blog about going with their kids to the zoo and story time at the library and the swimming pool or even for a milkshake, I sit home and push green crap (really want to use stronger word here) through a tube, tethered to a high chair.

PISSES ME RIGHT OFF.

68 comments:

Devon said...

and you have every right to be pissed off! i would be too and then some....

i dont have any advice. just praying for you all..

and seriously, there MUST be an amazing place in heaven for moms like you! I am baby loss mama too and some days just doing the "normal" stuff is hard....you do so much more than that...

so just know this mom from so cal admires you....hang in there.

Anna said...

You have a right to be mad and frustrated. Our son has had eating problems from day one. He is 3 years old now. Finally at age 2 we were refered to a feeding clinic and then OT. He would gag, refuse, pitch a fit, pack it in the side of his mouth, and eventually throw up. I know how frustrating it is as a mother and can only imagine eating problems combined with many more other problems. Patience was the key for us and one day it just clicked with Thomas. It was a long, long road but it is so much better than it was. Praying for you and for Jonah!

Kayte said...

Continued prayers for you and Jonah....XoXoXoXo

kdliberty said...

http://www.feeding.com/

These people are based on North Carolina. They have a way to email. It might be worth asking them..

Mommy Attorney said...

I have no advice, just an I'm sorry and I'll pray.

fulksfam said...

Oh Patrice. I can't even pretend to know what levels of frustration you're feeling right now. All I've got is empathy and a lot a lot a lot of love. I would give most anything to live closer so we could just come over and play with Jonah and hang with you more often.

All I know from life is that God is good. Well, I also know that His goodness doesn't always make things easy, or fun, or unfrustrating. But I'm pretty darn sure that He knows it - that there are some crappy (I'd also like to use a stronger word, and if I didn't care about the other readers I just might) situations in life that don't seem like they'll ever get better, so our frustrations are totally justified.

So be frustrated, because yeah, it totally sucks sometimes! Just don't get frustrated with yourself for BEING frustrated. Because you have every right. And a whole lot of us are frustrated on your behalf. I just hope you feel our love with our empathy, because there's more love than anything else.

OK, Casey wants to talk to Jonah -

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We love you three!

Amanda said...

Praying for a breakthrough to Jonah's eating aversion.

If he only knew how many things he was missing :( I'm sure he'll look back at all this and think (and KNOW) what an awesome, selfless mommy you are. And probably regret the days he would refuse milkshakes......He just might need therapy for that!!

Wendy said...

My son has oral aversions and had a g-tube until last month. We had OT support but honestly nothing they suggested/tried actually worked. Our GI team suggested that we just back totally away from trying real foods and the oral eating and just tube feed him for a while. They suggested offering tastes and figuring out which foods/textures are appealing but not doing set "meals" or expecting him to eat. We were going crazy trying to get him to eat and it was a relief to have someone give us permission to just stop for a while.
And you know what, it did help. Not over night, but gradually we saw an improvement. My husband and I were able to talk about something other than what our son ate/didn't eat/threw up. It was good. At age 2 1/2 he finally started eating and seeking foods on his own and just before his 3rd birthday the tube was removed.

Can I ask why you can't feed on the go? Do you have a pump? We used to pop it into a backpack, attach to the stroller and feed on the go. I'd hang the bag in the car, I had an IV pole for people's houses, and we fed him wherever we were. I have a backpack and a pump that I will send you if you don't have one. Free. Yours. With bags. Let me know.
Wendy

Cathy said...

I'm much in the same boat as you with feeding.

It drives me insane. Literally off the wall crazy. And you're right, people who haven't been there, they just don't KNOW. (We tried to go shopping the other day, and the kid puked his tubed meal THREE TIMES in a row. Argh!)

The best thing for us with oral aversions has been to stop pushing it. I sit him in his high chair (we can do fast boluses), put a piece of fruit/veg on a fork in front of him, and a cup of milk, and that's it. I bolus, he can play with it or not play with it - honestly, he prefers to play with the syringes as I finish with them. But a couple months into not directly offering, he started picking it up on his own and tasting. Still not EATING much, but he lost the gag and tongue-thrust reflexes.

Take a break for a couple weeks. You've earned it. He'll not be worse off in 2 weeks than he is now, and you might both feel better.

And look into pump feeding. Harder with blended foods (I use them, too), but I have a lovely 40 cal/oz pumpable blend, so it's doable!

Good luck. Seriously.

Beth said...

Praying for you Patrice. I have a friend whose son is 5, was a micro preemie and just within the past few months began to eat table food. Right now the only thing he'll eat is a chicken nugget........but it is a start. She has an awesome OT who has worked with them on some oral/sensory things. (she was also our OT with our son for other sensory issues)

I guess I'm saying this to hopefully encourage you that Jonah will decide food is good. I'm praying for you and admire you so much. I lose it on a daily basis due to my son's eating issues. I don't know how you do it.

Sonja said...

I'm not even going to pretend to understand what a horrible time this is for you...I can't imagine. So sorry you have to deal with this.

The only thing I can think of to try is something that worked for a friend with her adopted son. He came to them hardly eating, and would NOT eat for them. She decided to ignore it and had her older children (and lots of friends kids too) sit around the table and just eat and talk and play together. She consistently did this, and he slowly and eventually wanted to do what the other kids were doing and joined in. I've seen it in our own kids--they really do watch each other.

I thought the backpack idea was neat--could you do that, and go to an air conditioned mall or something and tube feed him while you both have something different to look at?

ninnifur said...

Immediately when I read your post I thought about the feeding pump, it gives the food slowly over time and you can do anything, its not gravity, like the feeds you do now so you guys could do more! and jonah could be able to play while eating! A commenter a few before mentioned that she would send you one for free... I would take her up on that! I hope your food problems get better :)

Abby said...

I don't at all understand what you are going through as I don't have kids yet, but I wanted you to know that I am praying for you, Matt and Jonah as yall all go through this. I know the road ahead still looks so dark and never ending, but I pray this passes quickly!

Sara said...

That is the same reason speech/feeding therapy never worked for Sami...she REFUSED to corporate!! So we stopped the therapy, stopped the fighting at meal time, and eventually she started eating willingly. It was a very long road but we made it and so will you!

I just thought of 2 positive things to share:
1- Jonah's stomach will grow and you'll be able to feed him more in one sitting!! And not so often.

2- though this is frustrating, I know you'd rather have this way to feed him instead of physically trying to get him to eat by mouth and you'd be even more worried about him. I am not sure which is more emotionally draining, worrying or being frustrated? Neither I suppose. But I think it will get better. One day you'll be comfortable feeding him in public and maybe one day he'll want to eat something!!!

katrynka said...

I agree with Wendy's post. It becomes a "power struggle", and it is something he can control. So if you take away your stress and just put him in the high chair when you eat, maybe not even put anything on his tray till he seems to express an interest. The formula through the GT can give him what he needs. (I know that I read a while back that you are doing a lot of purée- I read your blog all the time, just cannot recall the reasons, and am too tired to search!)

They make a back pack pump that is not gravity dependent, so kids can climb, run, jump etc and it does not get flow errors. Even though he is not quite that busy yet, he is getting busier, and the pump is very compact. You could run stuff in at a very low speed as he is going about his play etc. ( Since I know that emesis has been an issue for him when he feeds too quickly. )

Also, you might want to try and look at this blog, her little girl has had feeding aversion issues, coupled with possibly some sort of metabolic issues, and she has a feeding tube as well: http://khebert.blogspot.com/

Good luck:)

Erica said...

You have every right to be angry about this. Speaking from experience, feeding issues are HORRID to go through with a baby/toddler. I know that advice is probably not what you need right now, but can I just second the words of several other moms on here and encourage you to take a little break? Just take a couple weeks off- forcing food is certainly not helping either you or Jonah at this point. A break might do you some good. I know that when finally agreed to take a feeding break with Eli (meaning absolutely NO forced food), we started to see improvement in the weeks that followed. It's hard step to take, for sure, but maybe your ragged nerves could use a couple weeks of healing time without food battles?

As a mom of a kid who would make himself throw up when a spoon even brushed his lips, I know in some small way how you feel. My heart is heavy for you, and my prayers are with you!

Also, you might check out Ellen Satter- she has a really unique approach to food that helped us a lot once Eli got over the major hurdles with his eating.

Blessings!!!

Katherine @ Grass Stains said...

You are so right ... no one can understand it unless they've done it. I certainly can't; I go stir crazy just being in my house for 12 hours. I don't know how you do it, but I DO know that Jonah is with the right parents. There are few people on the planet who could do what you do, day in and day out. Love you.

Shari said...

I know and understand your frustrations with oral aversion regarding eating! It was so frustrating! We did bolus feeds (like it sounds you are doing) for a long time. Finally, we switched over to formula and a pump and we could go anywhere then. He was tube fed until he was older but he's seven now and doing great! There is hope and I know patience is so very hard and very frustrating when they won't do a 'normal' activity such as eating! I am praying God allows a breakthrough and Jonah will get the hang of it soon.

Rachael said...

We went though 3 OTs before we found one that worked for us. This site has so much wisdom from Moms that have been there Many prayers for you.
http://tubefedchildren.grouply.com/
Rachael

RLR said...

Thinking of you and praying for Jonah's feeding issues, your sense of frustration, and that the weather would also cooperate so you can get out more easily (even though it's just short trips right now). I hope that you find the kind of help/answers you need from some of the commenters above!

Shosh said...

I have no advice, I'm sorry. Just wanted to say Im sorry for your struggles and i hope things improve really soon.

Dan and Sarah said...

I read your blog all the time but rarely comment. Please just know that I am praying for you (and Jonah, of course, but really for you right now too!). I know it may not feel like much but please know that we are all out here bringing you guys before the feet of Jesus, whose heart breaks along with yours over the brokenness of this world.

Loads of love. May you experience His peace in mighty ways tonight.

Alison said...

I don't know if this will help but my little guy with eating issues seems to enjoy the experience more (whether or not he actually eats) when there are other people around. Eventhough you aren't able to go out, maybe others could visit you during meal/snack times and eat with your family. The focus will be off Jonah and about having a good time. Ya' know, take it with a grain of salt...
We will be praying. Also, give yourself and your nerves a little break. Jonah is getting all he needs and more. You are all loved.

Laura A said...

Praying fervently 1) for Jonah to start eating consistently again by mouth, 2) for him to cooperate with the therapists he sees, 3) for you and Matt to have wisdom to know what to do, and 4) for you to be encouraged.

I have absolutely nothing else to offer, and know that God's love, mercy and grace is covering you. Know that you are loved by all of us here in bloggy-world, and there's a Team from TX who is cheering for you, Matt and that sweet boy! If you think of ANYTHING else I can do, please email me!

Love from TX,
Laura

Masto Mama said...

I'm so sorry you're dealing with this--so frustrating!!

I was thinking that since you said he has regressed since being at Kids Eat, maybe he has that personality that makes him refuse more whenever he is pushed more. (I have one of those!)

Maybe you could take a breather from it for a little while--and as much as it sucks to deal with the schedule you have now, maybe breathing and praying and knowing it's temporary will somehow help get you through....I hope at least.

I'll be praying for you, your hubby, and Jonah!

(((Hugs)))

Ryley @ That's My Family! said...

all I have is love..
Love you.. love him.. love you guys! A lot..
You know what else? HE does too! :)

Toni :O) said...

I'm so sorry for your pain and frustration. I just c.a.n.n.o.t. imagine what it's like for you and I SO wish I lived closer to you to take some of that incredible weight off of your shoulders. I'll continue to pray for your sweet boy and to send you virtual hugs (( )) (( )) (( )) for strength and support. It's so not fair and I have empathy for you....praying for a cure in his lifetime. Hang in there and keep venting on your blog and we'll all keep holding you up!

Skye is the Limit! said...

Great word choice! We are dealing with tolerating issues as well and sadly have not found the "way" yet. Working on it! Dang g-tubes!
I am a lucker of your blog, and will continue to do so! Lovely family!

Cassie said...

Dear Patrice,

::HUGS:: for you.
I pray for you, Matt, and Jonah daily as I follow your blog.

You inspire me with your strength, courage, and honesty!

Much love, from a college girl in Minnesota!

otherwise known as mom said...

I wanted to let you know that I am passing this award on to blogs that I recently found and think are outstanding. You fit both criteria.

http://www.theshupevillezoo.blogspot.com/

Thanks for sharing honestly. I celebrate your successes and frustrations as you write about your days caring for Jonah.

momofJW said...

First....Here's a great big hug for you, Jonah and Matt. I can't even begin to know what one day in your shoes is like. But, I pray for you daily, admire how you are so honest and I love sweet Jonah boy. I know you don't need our permission but know that it is ok to get frustrated. Especially when we have no control. It's even worse then!
I pray you can feel God's love surrounding you and His peace overwhelming your soul.

Now....get Matt to watch Jonah, get some candles and take a long hot bath!

Much love and lots of prayers to all of you...

The Simmons Family said...

Patrice... I FEEL YOUR PAIN!!! It is frustrating and there is no end in sight. Feeding therapy can help, but Owen still won't eat and he's had therapy for two years now.

My biggest advice is .. don't stress the oral eating. I stressed out for so long and now I just offer meals, if he eats it than we celebrate. If not, we go about our day and it's no biggie. I've learned to just let it go. He'll eat eventually.

As long as they know HOW to eat.. and they do.. then it's just a matter of them not feeling motivated to eat. That's what 2 years of therapy has taught me. Ha.

As far as the going out... it's trial and error. I take a few 60cc syringes in an cooler when I go out and I just squeeze a little in.. wait 15 min then squeeze a little more. It makes a shopping trip a pain in the butt, but anything to get OUT of the house. :)

Good luck. You are doing a great job!!! It does get easier as they get older. At least that's what I keep telling myself!

Callie said...

Frustrating situation all around. Can you feed Jonah while he sleeps, so that he doesn't have to be in the highchair or does he need to be upright in order to keep it down? Just a thought.

Claire said...

Oh man, I can't even begin to imagine the frustration - you have every right to be pissed off, sweetie! Praying for you guys.

Cxx

Rachel said...

I seriously feel for you right now. I don't know how you do it. But you DO do it...very WELL. You are the best mama to Jonah and Gabe. I really hope and pray that it gets easier for you and these feeding issues improve. It looks like Jonah can wear "regular" shirts now? If so, I'd love to send you a little pick me up. I think (and hope) you will love it!

Krista said...

Thank goodness we are only on this earth for a short while! I admire you. On the days that I "feel" like I am losing my mind, you have every right to lose yours! But Jonah is such a blessing and inspiration to so many people and Mom, you are doing a great job!!!!

jess said...

What you (and Jonah) are going through just sucks!!!! No words of advice, just big prayers everything gets easier.

The Fishers said...

I am so sorry for the frustration you are feeling. Watching your child refuse to eat is heartbreaking and causes you to question everything you do. You seem to be a wonderful mother and I am praying for all of you.

Nathan, Laurie, Elizabeth & Emily said...

Continued prayers for you!

Heather said...

I don't understand but will pray!

Fedora T said...

My family and I will definitely keep praying for you guys!

Ellie said...

I am a SAHM too, and I know that I go completely insane when we (20 month old and 4 yr old) stay home all day. I'm always spending too much money just because I have to go to Target or something just to get out of the house. So I can't imagine how you feel, having to stay home all the time with a child who has even more needs than mine do. I feel for you! I know that doesn't help, but hopefully the praying does.

brightleigh said...

I have not been where you are nor do I know your frustration but I continue to pray for Jonah to eat. I will pray that God eases the frustrations that you are feeling. Your family is so unbelieveably strong. We love you all and we continue to pray.

Lari said...

I'm so sorry Patrice! I can't even imagine how frustrating it must be. I'll be praying specifically for you about this. ((HUGS!))

Mandy said...

I have no advice either but I just wanted to offer some support. I am always thinking of your family and I will be praying even more in the coming few days. I hate that this is the way Jonah has to live his life. I hate that this awful disease steals so many things from him, and you. I am so sorry. ♥

brenda in seattle said...

I am sorry things are so frustrating for you. I wish I had some brilliant advice. I have not read all the comments so I don't know if this has been suggested or not but what if you switched bandage changes back to the evening? I remember you liked it a lot better when you switched them to the mornings but maybe things have changed now and you could get out in the morning and do bandages later. I don't have an EB kid and don't know what I'm talking about. Just a thought.

Heather in Texas said...

Any reason he didn't have a fundoplication with the Mic-KEY button?

Debbie,mother of two said...

I am so sorry for all the issues you have with feedings. I can't imagine how it makes you feel,but I can read the frustration in your voice. I am praying for you and Jonah and Matt that the Lord gives you the in site of what you need to do. I will be praying that appoints open up sooner to give you some help. Hang in there and vent on these blog all you need to. This mom does not judge you for anything you need to say. I am sure you need to vent to people who are supporting you and praying for you. Lord, I know this mom is doing the best she can do, so help her today and give her peace.

Meredith said...

Patrice,
You dont know me, but I've been praying for Jonah since the day he was born. My friend is Karen Safley and so i've followed you guys every day you've posted of Jonah's life. I dont have a child w/ EB, nor the extent of eating problems that he has, but I have had one tough road w/ my youngest. She has had MAJOR food allergies since birth and finally after a year of projectile vomiting and diahrea and losing weight (15 pounds at one year old), they took her off everything but rice and wheat and fruits and veggies. Feedings have always been the most dreaded time in our house b/c our older daughter can eat whatever and that was always so hard to watch. Our pead. GI wanted to put a feeding tube in b/c she refused to eat day after day after day and after all other major medical tests showed she was healthy, we refused and I just gave my every day to the Lord trusting and praying He'd heal her body and help her be "normal." so I know where you are coming from and finally after almost 2 years, we got good news yesterday that hopefully will help her be able to eat like every other kid. But hang in there, a lot of it is age...A LOT! It does get easier and the more frustrated you get, the less he'll eat. I'll keep praying, but ask friends to come over and make some time to get out of the house so you dont go crazy!!!!!
the friend you've never met,
meredith

John and Crystal Pinegar Family said...

I am so sorry. I'm sure I can't even imagine how frustrated you are. I do know what it feels like to be isolated. I have 6 children, 9 and under. Between nap times and feedings I hardly ever get out and like you, it can't be longer then 1-2 hours otherwise we enter melt down mode for babies and mom. Maybe you could invite people over more often. It can be fun to have lunch brought in. Try to have people over, it might be your saving grace. Wishing you the best.

bryna said...

Why don't you try to feed him contiously through the night so then u can have they day free or maybe do a feed while doing dressing change and then one a nap so it frees up sonof ur time. I think u should try and contact this mother how has had so many feeding problems with her son it makes it sound like she could really help u or give u some great ideas. The blogs name is simmonsfamilyupdate.blog.com I really think she could help it is worth a try good luck

Jessica mommy to Alex/ RTS said...

been there, still doing it...its getting better. I just know it will for you too!

Joye said...

Feeding issues are for the birds. I hate them with a passion! I know you are tired, frustrated, and pissed off ... I've been right there with you. It just doesn't seem right that our kids can't do the one thing that should come so naturally. Something about that is so very wrong ... but you already know that.

However, I would encourage you to try a blended meal "on the go". I immediately looked for Andrea's response to your post, and we've done it that way in the past, too. We've also just put the mixture in the cups that come with the magic bullet and brought along empty syringes. You could sit in the food court and draw up each syringe, then push them. When you're done, just throw everything into a gallon zip-loc bag and clean it up when you get home. Who knows...an hour of people-watching may entertain Jonah more than an hour of TV or toys!

People will probably stare and wonder what the heck you're doing, but so be it. You're protecting your sanity and allowing yourself to get out of the house. No one can fault you for that.

I will continue to pray for you, Matt, and Jonah and I hope you find some relief and relaxation soon!

Pam the Realtor said...

There is nothing I can say to makes things better. Just want to send you a big hug.

Tami said...

Patrice, I am so sorry for the feeding issues that all of you are going through right now. I cannot imagine how you cope with day-to-day life. I have feeding issues for both of my in laws. There is something you can add to liquids to make it thicker. I believe it is called Thick It. You can buy it in different "thickness builders." Would something like that work for giving him high-calorie formula through the tube without the dependence on the microwave, etc? I know that if he pukes while you are out, you would pretty much have to have all of his dressing materials with you.

My MIL has ALS, and we have looked into the Thick It stuff for her liquids to keep her from aspirating on the liquids. She has left the house 3 times in 6 months for doctor's appointments. My FIL has a gastric feeding tube. So I know how much work it is to puree everything for every meal. Meal time at their house can take 2 hours from prep to eating to cleaning up. Unreal! We are fortunate to have some paid caregivers, but the family also helps in their care.

Is there any type of respite care that Jonah would benefit from? If you had a respite worker whom you were comfortable with, maybe that would allow you to get out once in a while.

Hugs and Prayers!

Penny said...

So sorry Jonah is having so many problems with feedings. We had just a tiny bit of that with my first son. He refused to eat food for almost a year. He wouldn't eat ANYTHING, no cheerios, no cookies, let alone the healthy choices. He just acted like everything made him choke! He was cleared for any physical issues.... it was SO frustrating and people did NOT get it. Statements like "he'll eat when he gets hungry" I hated that one! If we did get something in he just threw it right back up.
Now at 9 yrs old he eats! It didn't happen overnight and it turned my hair grey. Finally little things like freezer pops, and pudding pops started to appeal to him. We just didn't push him.... It was SO hard!

Prayers to you, I wish you lived closer, you could come mess up my kitchen. I don't think we could tell the difference!

ANewKindOfPerfect said...

Ugh, I'm sorry that feeding is such a chore right now! My daughter has been tube-fed since she was 14 months old. We do a slow rate of formula overnight via the pump. During the day we do a blenderized diet as well, in boluses of 100 ml's each. I take it with us, we go lots of places!

After I blend her food, I measure it into containers. Normally I just use empty baby food jars (her mixture involves meat/fruit/veggies per her dietician, plus other stuff). I take a 60 ml syringe with me, and a bottle with some water for flushing. People stare at us when we feed in public, but screw them.

I can't stay home all day. Not only would I go crazy, but my daughter LOVES being out and about!

Megan said...

so i have a question... what happens if you just DONT feed him thru the tube and wait until he gets hungry enough to eat? I follow your blog religiously *:)* and know that its extremely important he gains weight to stay healthy and ward off infection and everything... but even if he is stubborn, people/kids WILL eat whats in front of them if their tummy is hunrgy enough...

also must say- you DO have a right to be frustrated and pissed off! I cant IMAGINE what you have to go through.. but God picked you guys for his parents because he knew how strong you are :)

one more thing-what can a psychologist to with a baby? I mean how on earth can they evaluate his mental state when he can't talk or communicate since he's so little?

sorry this is so long, kinda curious about these things so i hope you can answer them in another post sometime :)

*megan from wi*

Janice Dyer said...

Just an idea...Do you think he is getting enough nutrition from his tube feedings that he is not hungry enough to eat??? This happens to patients in the hospital and they turn their tube feedings down.. Just an idea... I will be praying for you and your beautiful family.

Miriam said...

You are doing a spectacular job with Jonah...I can offer nothing other than my support - no advice, no platitudes, but when I see pictures of Jonah, it's clear you and Matt are doing something right. Even with all his challenges, he is happy and growing. While we should never take anything for granted with our children, you are living proof of hard it can be to truly live that way. You inspire me, truly you do.

Please hang in there...
Miriam

Kristine said...

Patrice, I sent you an email with some things that worked for us. It's not much, but I hope it helps in some small way.

It is so frustrating to read comments that like "he'll eat when he's really hungry"...or "just wait him out".

Obviously some people just do not understand that some kids with serious food aversions will literally starve themselves to death. Why else would kids need to be tube fed?! Argh.

kimmie said...

every time I post a whiney fb status rant (like today's) about the everyday challenges of motherhood, I think of you and J and know how selfish, shallow, and spoiled it all must sound. I hated to read about how frustating something as simple (and taken for granted!) as eating is for both you and Jonah. I will be cheering when you guys have your next wonderful day and hope that is in the very near future (like tomorrow!) Anyway, thinking of you and hoping for a lengthy surge of appetite and calorie-cravings for your charming little man. ~Kimberly (Randolph) Waller

Carrie said...

I was on a feeding therapy team for a few years. If you ever have any specific questions, please ask. You can leave a comment on my blog to reach me. In anycase, I would most certainly search for a very preferred toy that is only used during feeding time. If he lets you touch his mouth with the spoon, the toy is presented. Then you move on, if he opens his mouth then the toy is presented. Then next step, if he lets the spoon touch his tongue, etc. Try various things like you singing, an interactive toy, video, etc. Also, never have a feeding session in which you are trying to get him to eat orally last longer then 20 to 30 min.
I would switch him out of the highchair and see if there is anyway Early Intervention could get you a rifton chair and table. Or you could try him in a booster. You could even try him in a beanbag chair. Personally I admire you for sticking to the blended diet, nutritionally it is so much better. That said, there are many different types of supplements besides pediasure or peptamen jr that you could try. I know experimentation is not always pretty!! It may be that you need to hang a feeding bag from somewhere and let it drip very slowly. I have done this with students while on the go, it is possible- it gets some stares though!!
Feeding issues are by far one of the most frustrating experiences. There needs to be more trained professionals out there deal with this issue. It is a growing concern, even among kids without any apparent special needs.
You are an amazing mom

Carrie said...

I can relate to so much of your frustration with Jonah and his eating. My 18 month old son does not have a G-tube, but also has major issues with solid food. Every. single. day is a struggle. My son is in the 5th%ile for weight, so it is a constant battle for him to gain. I SO feel your frustration. Hugs from a fellow frustrated mom!

In the Mix said...

I have commented before but not read through all the comments on the feeding issues. So, I'm sorry if you've had this question and answered it often. Will Jonah eat if you give him food to put in his mouth at his own pace? I realize the mess with this would be enormous. The feeding issues we've had (and I will not even begin to pretend they are anywhere near the frustration you have experienced) have been somewhat if not completely remedied by giving over some control to the child. I don't know if this is even an option and would definitely not give him enough calories at the beginning. But it may get him excited about food. Maybe? I'm sorry if this is a repeat suggestion/question.
I love the honesty you put out on your blog. Though you definitely grieve the loss of "normal", I think you do a fantastic job with your little guy (from what I can see from your blog). :)

Just Me - MJ said...

Oh, Patrice...what an incredible mother you are, even when you least feel that to be the case. My son has multiple feeding issues (but no tube yet), and I can only imagine how much more frustrated you are than I am (except our feeding issues have gone on for longer, by virtue of the fact that my son is older than Jonah). I wish I lived closer so that we could go out to lunch for 30 minutes at 2:30pm - I know how isolating and frustrating it is to be tethered to the house b/c of your child's eating pattern and habits. There's really nothing like it. I'm so sorry you're struggling through it & that you feel that there is no other solution available to you right now. About the only thing I can say is, it does get better. Somehow, some way, eventually, it has to get better. Hang in there.

Kristy said...

I have no advice. I just wanted to say we are praying for you all.

ANewKindOfPerfect said...

I know I replied earlier, but I had to comment again. I read that "Megan" wrote to just let him get hungry. She says that all kids will eventually eat when their stomachs get hungry enough.

Fortunately for Megan, she's obviously never had a child with serious feeding aversions! My daughter will literally NOT eat. If I didn't tube-feed her, she would starve to death. It doesn't matter how many hours I tried to wait her out. It would be weeks and she would die.

Some kids DO not eat. That is why they have feeding tubes! Do you think we enjoy feeding our kids this way?