Update on Abigails weight

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
season
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Re : Update on Abigails weight

Postby season » Wed Mar 22, 2006 01:20 pm

I am so sorry to hear that you are still struggling with Abigail's weight gain. I have heard - not an expert - that some preemies don't understand their own bodies hunger cues. This is a result of tube feeding etc in the beginning. Also, many preemeis have sensory issues that effect their abilitiy to eat. From what I understand therapy helps both of these issues. It might be worth looking into.

missgamecock
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Re : Update on Abigails weight

Postby missgamecock » Wed Mar 22, 2006 12:25 am

Funny Julie I remember people telling me about jars of baby food too and bottles too. The most I ever got Kirsten to take was 4 ounces at a time and those were really good days. Most of the time it was 2-3 ounces if that. It is so wierd because Sara is wearing clothes that Kirsten wore at 18 months. They are sizes 6-9 months and Kirsten didn't wear that forever. Then when she got into a size, she literally wore the clothes out. I never understood how moms would complain that their babies were growing out of their clothes so quick. BUT the good news is Abigail will eventually outgrow it one way or another and it won't always be this way. Oh and Julie, Kirsten still wants icecream every night too. I was horrified that my ped would actually suggest giving her junk:)

whosures
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Re : Update on Abigails weight

Postby whosures » Wed Mar 22, 2006 09:41 am

I know it's hard to look into the future when she's this young, but take heart! The other night Riley ate almost half a can of Chef Boyardee spaghetti and my Aunt turned to me and said, "Did you ever think she'd do that?" I just laughed because eating with her is no longer such a horrible, stressful experience. (Well, as unstressful as eating with a 4 year old can be.) My mom used to tell me "Just wait until she's eating jars of baby food at a time." We never moved past one. :)
We just took copious notes on what she was eating and watched for patterns. We eventually realized that textures were an issue for her so we just gave her as much of the foods she liked as we could. I agree with the above poster who says "If you have to give her ice cream every night, give her ice cream!" It goes against everything we've been taught about how to feed our children but we've finally accepted it.

mama2twins
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Re : Update on Abigails weight

Postby mama2twins » Wed Mar 22, 2006 09:32 am

Molly,
I am so sorry that you are still dealing with the weight gain stress. It is so frustrating to be unable to find a solution or any answers to what the problem may be. I remember being in your shoes and going to doctor after doctor hoping that SOMEONE would fix the problem. Any doctor that couldn't fix my girls was not a good doctor in my mind. I was actually always a little excited for a new appt because I would always think that I was going to walk out of the office with the problem fixed. It is amazing how weight gain can become such a big deal that your mood is really based on how much your child eats. I still get a happy, relieved feeling when they eat or drink alot and get in a bad mood when they do not. The stress of being a preemie mom is not even imaginable by those who have not been in our shoes. I just always remind myself that we as preemie parents are more thorough, patient, involved, and often better moms than the average because we care about every little move they make so much more.
Remind me about her eating... Is she only drinking? Any solids? Texture issues? Reflux? Has anyone tried an appetite stim med? Is she growing in length and head circumference? I know you have tried everything, but I would like to help brainstorm soem feeding strategies and can also bounce ideas of the speech therapist I work with.
Just know that most of us over here know that "hate being a preemie mom day" and have all been there. Don't feel bad for feeling that way....you can only take so much before you have to break down and start over again. This is not going to go on forever even though it feels like it already has....there WILL be a day when you say..."remember when Abigail would not eat?" just like we all can know think "remember when she was in the NICU and we thought she would never come home?"
Hope you have a better day!

wcarder
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Re : Update on Abigails weight

Postby wcarder » Wed Mar 22, 2006 09:26 am

Molly,

Yesterday, I took dd to gymnastics and there was a mom there with a beautiful baby....that I was SHOCKED to learn was only five months old. He was 20 pounds!!!!!! After seeing him, and now reading your post, that really puts things in perspective for me, with regards to what you are dealing with. I can't imagine that struggle because I thankfully didn't deal with weight gain issues with my preemie. I know that this is a common, and difficult, issue for many preemie parents, and I think you are getting great advice and encouragement from the ladies here and you are doing a great job. I wish i could offer some advice or experience, but I can't. All I can say is keep doing what you are doing. Stay on top of it, stay on top of the docs, and I will hope and pray that you get answers, or begin to see progress with your daughters weight/eating soon. We all have those days as parents where you feel the way you are feeling, but you are a great mommy and we are here for ya.

amiejo
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Re : Update on Abigails weight

Postby amiejo » Wed Mar 22, 2006 08:56 am

It's so frustrating when kids wont eat. My dd never ate much but she made consistant weight gains. Slow but not concerning. Her biggest problem was the texture of food. She had an oral sensitivity to food that wasn't pureed baby food. She never wanted the stage 3 or any table food. We actually had to start a therapy program with an OT and a feeding specialist where we took her in for eating sessions. They did oral exercises like brushing the back of her tongue and other stuff. Lots of rewards. Very behavioral system of learning to eat. They had a great program (it was at the Children's Institute in Pittsburgh). She is still very picky but at almost 5, she is doing much better.

Just know that there will be a point where this will resolve (on its own or with help). And think, when else in life is she going to have free reign to milkshakes, ice cream, cheese, and butter on everything. I hope you get some more answers.

Lots of thoughts and hugs... Amie

missgamecock
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Re : Update on Abigails weight

Postby missgamecock » Wed Mar 22, 2006 07:10 am

Molly sorry you are going through a tough time. We did the same tests for Kirsten and got the same answers. Even though she wasn't nearly as early as Abigail, she still had issues. I certainly know the frustration of trying to get a child to eat. We spent hours trying to coax her to eat a morsel. But I will tell you what the ped and specialists told us once they ruled everything out, she will eat when she is hungry. In the meantime, try giving her high calories stuff. If it means icecream every night for dinner, so be it. The point is to get calories in. At every opportunity try and give her food. We also used rewards for eating so much. We still have no answers as to why Kirsten was so tiny. Hated the term Failure to Thrive. We saw a pediatric endocrinologist, pediatric cardiologist (because she would turn blue), had bone age density studies done, and more blood work than I can count. She was just tiny and had a fast metabolism.

Now she'll be 7 next Monday and she is literally eating me out of house and home. For her, her big jump was at age 5. That's when it turned around for her. At 7, she weighs about 45lbs now with all her clothes on.

Sending you many hugs...

youtan
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Re : Update on Abigails weight

Postby youtan » Tue Mar 21, 2006 10:47 pm

Molly - I just have to say that I think you are doing all the right things. We are all entitled to have these kinds of days when we are worried about our kiddos. Glad to hear your good news, but getting 'results' from docs which are non-specific, like 'its a micro-preemie' thing is difficult. Hugs to you.....


molly419
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Update on Abigails weight

Postby molly419 » Tue Mar 21, 2006 09:54 pm

So, Abigail and I went to good ole Philly today, to the metabolic/genetics clinic, for her test results and check up.

Good news: She does not have a lactic acid disorder or a genetic disorder(as of now.) She had more blood work to test for 2 more genetic disorders, but the doctor highly dobuts the test will come back postivite.

Bad news: This puts her back at square one on why she is not gaining weight. The specialist suggested "her weight may be a micro-preemie thing" and there is nothing we can do. Sigh...I don't know what to do, or what to think. I just want the best for her.

Her weight today was 15.8!!! [:0]

So, it was a stressful day! I hate driving in Philly and we waited 1 hour and 50 minutes PAST our scheduled appointment, till we saw the doctor. Abigail and I both have cold, and needless to say, neither of us were happy campers. And of course, leaving Philly, we hit rush hour traffic, and I almost got creamed by a semi.

Im having a "hate being a preemie mom" day.... When will all this crap end?!? When will my little girl start really eating, and gain weight!! Sam and I have done EVERYTHING that we can, and I am burned out! I broke down tonight, after another battle to get Abigail to eat dinner(Im talking taking 6oz total). I am taking her back to the feeding specialist this Friday, to get answers with her eating problems(I hope!). Girls, I am so sick of all this.....as awful as it sounds, its days like today that I hate being a mom.


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