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Sunday, March 22, 2009

sick = 1 pound down the drain

Kaitlyn got sick last Friday, ended up being very sick come Saturday and Sunday, and as of Tuesday, we almost had a trip to the ER when Kaitlyn had 1.5 hour coughing spell. i was so worried, she just couldn't stop coughing.

Thankfully Brian was home and listened to her lungs and felt she was moving air and I called the 24 hour nurse line, when I finally go the nurse on the phone her spell had subsided (I had tried everything with no luck, abuteral breathing treatment, steam in the bathroom, water, muccinex). I think eventually it was her licking a cough drop and the muccinex that worked. Oh her poor little body racked with the coughing spells. It's just heart breaking.

Doctor visit the next day felt that thankfully it wasn't in her lungs (or ears) and no antibiotics this time around (in the scheme of things, compared to many of my micro friends, I'm truly lucky in this regard. Kaitlyn's never been re-hospitalized for an illness, a real rarity with her lungs being so immature when she was born and having spent 6 weeks on a ventilator)

But, then again, will she ever be able to withstand getting sick without round the clock breathing treatments? My not sleeping, listening to every cough, every breath, making sure she's ok and worrying that she's going end up in the hospital this time? Do all kids colds turn into horrible coughing fits? She immediately stops eating of course, and we lost a pound in about 4 days.

I had been so happy that she as finally over 27 pounds, she had even gotten up to 27.6 pounds, the last weight check was 26.4.

Sigh.

That pound took almost 1 year to gain. 1 year. Down the drain.

Sigh..

Of course after she lost that weight and she started to improve from her bug I started "pushing" the food on her again.

the more I pushed, the more she refused.

Sigh...

At the same time, we've been having battles over pooping. Kaitlyn just hasn't gotten the whole poop in the potty thing. And the more we ask her to sit on the potty (when it's CLEAR she needs to poop, crossed feet, she bends down, and we smell tell-tale-signs, well after about 5 or 6 times of having her sit, her not wanting too, asking me "what's in my underwear, mommy?" gets up again, then eventually she goes in her underwear. Typically about 1 minute after she was last on the potty. SOOOO frustrating.

So on both accounts, (pooping and eating)we are on a "New Plan"

Our New Plan is giving Kaitlyn total control of her eating and potty.

We are back in pull-ups. I've told her: when you are able to poop in the potty you can start wearing your big girl undies again. When you need to go to the potty, you need to tell mommy and then I'll help you. She gets close to asking, I say to her, is there something you need to ask me? "use potty Mommy" (this is while she's giving me the very clear physical signs, crossing the legs, etc), but we've had no poop in 2 days, I think she's very stressed out over the whole thing.

sigh.

Eating. Well, usually she eats a bit on her own. a bit. We then spoon feed her as much as we can get in. And try to get her to drink milk. As I said, the more I've pushed the more the battles ensured. I tried just one ounce of milk the other day (with carnation instant breakfast in it) and she refused it. I told her she just had to finish that milk, she said "mommy feed you" (she still mixes up her pronouns) I know she has the ability to drink her own milk, feed herself, this was becoming a clear battle of wills.

it was sooo frustrating, I was home alone, Quinn was his typical screaming in the background, I lost it. I was so mad at myself for getting into the "battle of wills" with Kaitlyn. She's 3.5. How can she practically reduce me to tears? I feel so horrible as a mother, I can't get my child to eat? At times like this I wish in a way I still her her gtube. Then at least I could feel a bit better about getting nutrition in her, but then again, if I had it still, I actually don't think I'd use it, as how will she ever get the understanding of how it feels to be hungry?

So the "New Plan" is to let her completely (100%) determine how much she eats.

Well so far, this new plan is horrible (on me at least) and she has hardly eating anything at all. I 2nd guess myself all the time.

sigh.

I can't tell you how hard it is to have her sit down and then say she's done without touching a bite. Other times, she's asked me to feed her, I've said no you are a big girl now and you get to feed yourself. I'm really hoping that she'll start feeling hungry and actually eat more than a piece of toast and a few sips of milk.

Please give me the strength to trust that her little body will tell her that she needs the nutrition.

I was so happy that she had finally gained that pound. I could tell she weighed more. Now every rib is sticking out, her little legs are so tiny.

She's 3.5 years old and weighs 26.5 pounds. And for each of the last 2 days she drank about 4 ounces of milk, some juice ate a piece of toast (with as much butter on it that I cut put on it) and maybe some crackers. Not a lot of calories.

Sigh.

Oh... the life of feeding a micro preemie. What they never tell you in the NICU. If you are reading my blog and have a child who eats, be thankful, I know it's a small thing, you never really think about the fact that your child just sits down and eats. But I'm telling you, appreciate the small things, as if you have a child who doesn't eat, know that we jealously watch the simple things and wish it could be that easy for us.

Edited to add:

Funny enough, I just read my good friend Billie's blog and she just blogged on the exact same subject: here's her post called: Feeding MicroPremies

17 comments:

Molly said...

Liz i dont know all the facts except what I read on your blog, but I hope you find the strength and the prove that your new plan works... I would also think that she will eventually get hungry, you are so right that the more you push the more she will block herself. So i hope it will work out and that your new plan is the right one !! What about talking to a nutrinionist what kind of high calories and nutrients food to give her, since she eats so little, to max that... but you probably did that...
Well hang in there and ill be looking forward your next post about the improvements !!
Molly, BC

Sarah M. said...

That would never work here...Sydney doesn't feel hunger we think. Sigh. I'm sorry about the weight loss. That is such a bummer. :(

Kristin said...

I feel your struggles.. we discussed in emails, food is such a struggle in our house too.

I have surrendered to the "do your own thing" plan as well. Some days she eats ABSOLUTELY NOTHING. Which is why it is so difficult to force her to give up the bottle.

As for the potty - she is fine all day at daycare in big girl panties, but the instant she gets home, I take her to the potty, she refuses to go, and 5 mins later, she poops in her panties. And seemingly doesn't care.

The battle of wills.. troublesome threes need to be over SOON before I lose all my hair.

Catherine Chandler said...

Liz,

I'm so sorry you are going through this again. 1 lb is a lot for a child to lose. One of the things I've learned over the past 4 years of nannying children of varying ages, is that so much of these first 6-8 years of child rearing is behavior modification. It might sound bad to some parents, but just as much as the kids are trying to manipulate us, we have to manipulate them. Hear me out. With the potty thing, that's definitely something that you can't push her to. But, you can create a reward system. Like every time she goes pee pee or poo poo on the potty, she gets a special sticker (which she gets to pick out or if it works better, you pick out for her). If it starts out with pee, then she'll probably work up to the next level on her own. And definitely keep the big girl panties as a reward for when she starts doing poop on the potty (maybe even take her shopping for a new pack).

For eating, one thing that's worked really well for me is using a smiley face chart. It works especially well if you have a chalk board hung up where Kaitlyn can see it(or you can use a pad of paper)...draw three circles (one for each "meal" of the day). When she's eating breakfast, tell her that if she eats all/most of her food and does well, she gets a smiley face, but if she doesn't eat or fights, she gets a frowny face (and that's veerry sad). Emphasise how sad it is to get a frowny face. The reward system with this one has been that if the kids did well, they could have a snack between meals, but if they didn't, then they couldn't snack between meals because the weren't hungry enough to eat their meal. I'm sure something different would have to be worked out for Kaitlyn in lieu of snacks (or not).

Hope this helps!!! I know how exasperating all of this is so I'm thinking about you guys a lot!

Myself said...

I only know waht I read here, and admittedly that's not much. But have you tried sugar in the butter you put on her toast? You can also slather the crap out of those crackers. Crackers and butter is always awesome.

Best of luck.

Stephanie said...

You hit it right on the head. My daughter is not a Micropreemie, however, she does have a lot of her own issues - and eating is one of them. She is 100% G-tube fed becasue she does not have enough muscle strength to swallow and due to her underdeveloped cerebellum and other neurological issues we completely tube feed her to prevent aspiration.

I don't think people realize how lucky they are to have their child eat. I had a lady make a comment to me that was supposed to make me feel good about Kennedy. She said, "at least you don't have a messy child - no messy clothes, messy faces, and no dishes to cleanup" WHAT - could she be more wrong. I have a baby that throws-up, so many syringes to sterilize, and sterilizing her feeding bags. I think I have more work to do then the average mom.

The little things that people overlook!! I don't think people realize how much we wish eating was not an issue.

I wish you all the luck! I think Kaitlyn will eat when she is ready. It all is so new to her. I know she will eat when she is ready. I will keep you and your family in our prayers.

Love,
Stephanie & Kennedy

Shannon and Carey said...

Hi Liz,
Sorry about the eating thing again with Kaitlyn. And to have lost that precious pound. I cannot imagine how frustrating this is. Alot of the times I get the kids in their chairs for them to only pick at their food. It sucks and I have thrown alot of food away. I know that its very important for Kaitlyn to eat and alot different from our situation. But its still damn frustrating. I hope it gets better over the next few weeks.
Shannon in Austin :)

Anonymous said...

liz,
Hugs to you! There are no easy solutions and you are doing a great job. I hope things improve little by little, as I know exactly how frustrating it can be.

One thing I will say is this, with regard to a prior comment: If I had a dollar for every time I heard, he will eat when he is hungry, I would be rich! That simply is not true for children with involved issues relating to food. It is way more involved than that.

Anonymous said...

hey liz, this is beth. We are going through similar situation in our house in regards to eating. As you might know, I have Kayla who has the g-tube and her twin brother who is a typically developing child. We have the same problem with Tyler. He does not want to eat and the more I push him, the more he refuses. He takes one hour for breakfast to eat one egg, or a single pancake and not even finish it!! Lunch and dinner also takes at least an hour each meal. I also tried your approach of giving him total control of what and how much he eats and it doesn't work. He would only take a few bites. Uggghhhh. Luckily for us, he likes to drink milk so at least we are able to make up the calories for it with the milk. I've tried bribery, reward system, etc etc. It does not work. I feel your pain! I honestly don't know who I hate feeding more, my g-tube child (who eats some orally)or my non g-tube child. I DREAD MEAL TIMES and would rather get a root canal anyday than feed them. LOL I know that sounds horrible but it's true. Regarding weight, we are going through similar issue with Kayla. She lost 2 lbs in 3 days recently with diarrhea caused by antibiotics. It took her 5 months to gain those 2 precious lbs and to see it go down the drain kills me. Kayla is 4 and merely 30 lbs and I've got a nephew who is 7 months and 25 lbs! SIGH. Hang in there. You are not alone!

Anonymous said...

Hi Liz!

I am so sorry to hear about your struggle!I love to read your blog and I check everyday to see how you all are doing.You are such a good witter!You are so specific!
When I read your blog I can literally
see what's going on from your description!It's not very brief neither it has long boring description!You are so smart!You always give me the strength that I always get from your blog and I hope you get more strength to fight all the odds and because of your super intelligence Kaitlyn is doing so much better!I know she is not doing that great in eating but she will do it.She is a bright kid and potty is very hard for any kid to learn.If she wants you to feed her when she is sick may be you can consider to feed her and that will make her happy!You always know what is the right thing to do and you are so right!My child has the feeding tube and I know your pain.Don't feel sad as you know you did an amazing job raising your children and nothing will stay the same and your husband and children are so lucky to have you!

Kathy.

Anna said...

Liz,

look at her next post. It will lift your spirit! All the best.

kbotr said...

If your interested in a good book regarding feeding the author Ellyn Satter has some good information. She's a psychologist (I think?) that specializes in feeding. The one I recommend often is "Child of Mine, Feeding with Love and Good Sense." I work with many kiddos as a feeding therapist like your daughter and feel your pain. Hope you find something that works for you! :)

Kristen

Amy said...

You know the situation with my kids...only (ha, only) 8 weeks premature and luckily, very, very healthy. However, Brayden was on a vent for 8 weeks and he 9is 3.75 years old, and only weighs 27.8 pounds. He eats well...now. That has only happened in the last 6 months. I will throw a party when that child hits 30 pounds. Also? Just in the last 3 weeks has started to poo poo on the potty (he's been peeing for several months). I thought we would get kicked out of daycare for him CONSTANTLY having poo poo in his underwear. When it finally clicked, he hasn't had an accident since. Here's hoping the same happens for Kaitlyn

Anonymous said...

My son, not a preemie, refused to poop in the toilet until he was 4. He never had pee accidents and knew when he had to poop, but something about pooping on the toilet made him uncomfortable. So, we'd put on a pull-up when he'd ask and then he'd poop in the pull-up. Finally, once we knew he was mature enough to understand what a "deal" was, we made a deal with him and told him that to have birthday cake he'd have to start pooping in the toilet before his 4th birthday. I think that because he had grown comfortable controlling his urges and recognizing them it clicked. Just before his birthday we agreed and he took off the pull-ups and started having BMs like he should - in the toilet. Sometimes I think kids are a bit afraid of the toilet and just need some extra time to get to a fully trained point. Don't despair, she'll get there at some point!

Michele said...

Liz,
Sorry to hear that you all have had such a bad time lately! Kenny has been sick as well, so I am feeling for ya!!! I also sit and wonder if, for the rest of his life, will he need breathing treatments or hospitalization with every upper resp. cold? The coughing and rattling in the chest is the worst...not to mention, the feeding DOES stop! All that hard work to get them to eat...to gain waight...wasted...DARN! I hope she's feeling better and know I always think of you guys!

Sharipoland said...

Oh my gosh - do I ever relate to that post! It is the scariest thing in the world to give your micro-preemie complete control over their eating. I cant even begin to fathom how we are going to do it with our son. Every ounce of weight is so precious and hard earned! You know - I had a friend whose daughter was in feeding therapy with my son. She eventually decided to give her daughter full control - she lost about 7 pounds and then one day it just seemed to snap with her and she just started eating. Now she eats completely normally. I personally dont think I could have endured the 7 pound weight lost. Is that what it takes?? It seriously scares me.

liz.mccarthy said...

Kaitlyn got sick AGAIN! and stopped eating, but I have to say, for some reason she hate hugely tonight, it was totally shocked. Well it wasn't huge, be she ate with abandoment as she was hacking and coughing into her soup.

I think what might have worked is that she ate NOTHING a few nights ago, after we had made Strawberry shortcake together, she wanted some, but I told her she couldn't have any as she didn't eat a bit of dinner and then I ate hers as she watched (maybe torture? ) I told her she didn't have to eat her dinner, as it was ok with me, but she couldn't have a treat if she didn't eat the dinner.

Now, I don't want to get into rewards (desert) for eating, as I think that sets up bad habits in the long-run..but...she said to me tonight, "Strawberry shortcake after dinner?" As she was asking for 2nds (and 3rds) of soup. Now, it was tiny portions, as I hadn't expected her to eat a bite.