Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Monday, May 2, 2011

Feeding Update

I had drafted this post a few weeks ago in response to a request from a friend and blog follower for a feeding update. I don't have the strength right now to write about what else has happened in the past couple of weeks, so I'll focus on this one topic near and dear to my heart.

A few months ago, Eliza had started to eat small (post-it note size) peanut butter and jelly sandwiches and cheese sandwiches. She had started to eat 2 inch square pieces of waffles, a few bites of pancakes, a bit of pizza crust and a quarter of a mini bagel with some butter. In the past month or so she has once again refused these. She has lost well over a pound in a month, has taken three times as long as previously to finish a "meal" and has dropped down a size in pants back to a 3 and has those tell tale dark circles under her eyes. She and I will see her doctor in the next couple of weeks to see what has to be done. Eliza knows if she doesn't eat she will need a tube in her stomach, and she says she does not want one, but it is still not enough incentive to try to eat.

Everyone I know whose child is Eliza's age (and some who are younger) and who had feeding issues has moved on down the road. Far, far, far down the road. They eat pizza, hot dogs, pasta, burgers, freaking Happy Meals, chicken nuggets, macaroni and cheese, mashed potatoes, rice, fish, soup and ice cream (Eliza no longer eats ice cream), just to name a few. Eliza will no longer eat cake or muffins and there are two brands of cookies she will eat (one of which I cannot buy in the US). An average "meal" is two saltine crackers and one slice of American cheese. Try that three times a day and see how you feel. She won't drink formula anymore, just milk. I suppose I should be thankful it is whole milk and I can add protein powder to it. I am tired of people telling me how awful it is that their child will only eat one brand of burger or only flavor of yogurt or only a half a slice of pizza or only style chicken nugget or brand of hot dog or some magical freaking smoothie. If Eliza ate one of these things, and only one of these things, I would breathe a sigh of relief. But she doesn't, so I cannot breathe that sigh.

I am not looking for sympathy or empathy or advice. I suppose though I am asking people not to call me and email me to complain about their frustration that their child only eats one kind of pizza/hot dog/vegetable/fruit/meat/yogurt/chicken nugget. I just can't listen to it right now. Maybe someday I can reclaim my role as the Dear Abby of feeding problems, but not now.

21 comments:

Noelle said...

I am so sorry. I am new to the world of feeding problems. (New-as is my baby is new at 9.5 months and 7.5 months adjusted).

We just got a g-tube to due oral aversions.

I have nothing to offer nor anything to say to make you feel better. No one knows what it is like to have a child with feeding problems until you are there. Don't you just wish that you could hand everyone you meet a note, that instructs them not to complain to you about their child's choices in food?

Sarah M. said...

I doubt this makes you feel better, but just in case it does, you're not alone. (and if that doesn't make you feel better, stop reading now ;))

Sydney has majorly regressed since January/February. We're actually having her scoped because it has been that bad. Our average meal now is about 1-2 bites of each food offered, at best, so 5-6 bites of food total usually. And that's if she actually eats. Tonight, for example, she didn't eat anything, she just sat there staring at the food until we gave up and put her to bed. (Wow, that sounds horrible. I swear we weren't mean about it. She just literally would not take any bites. She sat there and played and sang to herself.)

Granted, we have the tube already, and Sydney will still drink some formula (she's drinking an average of 20oz/day and then we're tubing another 16oz + 8oz water) so it's not as big of a deal for us as it is for you guys, but still. I totally understand. I'm really sorry.

I hope if you have to get a tube, it's as helpful to you guys as it has been to us. Our tube is the only reason I'm not in a mental institution right now ;) And I'm only sort of kidding. Ha.

Sarah

SpeasHill said...

Hang in there. Feeding issues make me want to bang my head against the wall. You don't have to be anyone's Dear Abby, either. Good luck in your upcoming conversations.

Sarah said...

Video and tube bunny on the way. I can offer you nothing but virtual hugs and those are only worth so much.

We still struggle with eating. Emery makes major strides and falls back. Like Sarah, the tube is a major reason why I'm not rocking back and forth in a rubber room in a straight jacket. I almost said rubber jacket in a straight room, so the tube doesn't conquer all. Just some. Ha.

Sarah M. said...

A rubber jacket in a straight room sounds like a good stress release. You could run up against the walls and bounce off... ;)

lilibeth.yu said...

You are not alone. We have had feeding issues for 6 years! Not sure if you know Dr Patel and her work but she has helped many children. Most kids "graduate" from her program in a year, goes from eating nothing to being a typical eater. We have been in her program for almost 3 years. We have made a ton of progress but long ways from being a "typical" eater, what you described as eating nuggets, pizza, etc. How I wish!! What I found that has helped us are Periactin, Accupuncture, oral motor exercises, praying and praying for that miracle. Please hang in there! You are not alone!

Barb said...

Anne, I have nothing clever to say. It sounds like a nightmare and one of those treadmills of life that is overwhelming. I'm so glad you talk about these issues and your blog has become a place for others to find empathy and support. Hang in there. With all you've been through in the last few weeks, you need to remember to take care of yourself and not worry about being Dear Abby for anyone else. Hugs and prayers.

Anne, Eliza Grace's mom said...

Lilibeth,

I am glad you have had some success with Dr. Patel. Years ago I spoke with Dr. Patel and she indicated that she did not think Eliza was an appropriate candidate for her feeding methods. Eliza has been on Periactin, she has had acupressure, cranial sacral therapy and sees a psychologist.

Thanks again for the support.

Megan said...

oh Eliza! SO sorry to hear about this regression! :(

Sarah said...

I got nothin' but sympathy, my friend. Good luck with whatever comes next.

BusyLizzyMom said...

All I can say is I am sorry that things have not improved for you or Eliza in the eating dept.
Being able to ensure your child's nutritional needs are met is a deep seeded need as a mother and not being able to do that depsite all the hard work you have done must be so hard.
Hugs

Amy, John, Sam, and Frank said...

Anne,

Okay, no empathy, sympathy, or advice. Also no bitchin' and complainin' on my end either. Just want you to know I read and am thinking about you.

Anonymous said...

Anne, no advise, just want to say
what a fantastic job you have done with Eliza still doing. She is the most adorable kid.

lilibeth.yu said...

Hello, You're a wonderful mom and doing everything you can for your little girl. I know how you feel because I've been dealing with feeding issues for 6 years. Uggghh..meal times is the most stressful part of my day. I DREAD it. Unfortunately, we have to deal with it several times a day. I wish we only have to eat once a week. LOL Anyway, I also wanted to tell you about Megace in case you haven't heard of it. It's another form of appetite stimulant. All the kids on my support group have had great success with it except us. Of course! Again, hang in there. You are a wonderful mother!

Anne, Eliza Grace's mom said...

Lilibeth,

I have not yet tried Megace, but I do have a funny story about Megace. My Dad had Alzheimer's Disease and eventually lost his appetite and kind of forgot he was supposed to even eat. So they started him on Megace. Well it worked so well and he was so hungry I caught him snacking on his tea bag one day :)

At our next appointment coming shortly I am going to ask more about it. Eliza's GI was not a fan of it and I think had some concerns about the use of it in children. Do you have any literature on the use of it in children? You could email that to me at elizagracesmom@yahoo.com

Angelina said...

Hang in there Anne.

Anonymous said...

I've been following your blog and Eliza for some time now, hoping for updates on Eliza's feeding. Feeding issues are HARD, and NO ONE understands unless they're in it themselves. Just want to let you know what a strong mom you seem to be, and how adorable Eliza Grace is. I crumble at a lot less. Thanks for being a source of strength and a point of community for moms like me.

Kinda said...

Hi Anne,
I know this is minor compared to Eliza's issues, but Anna had feeding problems when she was younger due to sensory issues (she is on the mild side of the autism spectrum). She was at the bottom of the weight charts when she was little, particularly age 5, when she had fallen off of it.
Around age 6 or 7, she finally started eating normally and by now, at 10, she is doing fine.
But my aunt in Tenerife sent us something called Dynamogen, which is used over there as an appetite stimulant in kids. Can't get it here. But we had her feeding specialist at Cinci Children's check it out for us, declare it was safe to try, and we did. And it definately increased her appetite.
If you are interested in trying it, I'm sure my aunt (Betty, my mom's sister) could help.
Good luck to you, and the beautiful, adorable Eliza!

Anne, Eliza Grace's mom said...

Thanks Kinda. The main ingredient in Dynamogen is cyproheptadine which is the generic name for Periactin which is available here. They are both antihistamines that have the side effect of stimulating the appetite. Eliza has been on and off of it for years with occasional limited success, but nothing consistent.

It was nice to see you, although it was brief. Hopefully we'll meet on Saba one day soon again!

Anonymous said...

Awww man. Can't you two get a break w this?!?! FWIW I'll keep sending you good vibes.

CoCo

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