Wednesday, February 6, 2008

The dream...

With the feeding equipment..
Without the feeding equipment.
Maryam before her feeding....
Maryam during her feeding. (Weird, she almost looks happy)

Oh, the dream! To never have to use a feeding pump again. No tubes in her tummy, no "venting" instead of burping. Not ever having to order 60mil catheter tip syringes or Kangaroo pump bags. Not caring if we have any extra bolus extensions, not worrying about the insurance company telling us we can't order any more Mic-key buttons for this year because they're too expensive. Not questioning the way I lay Maryam down in her bed for fear that I'll bang her head on a pair of plastic scissors in place to hold the bag tube and venting syringe or the ultimate fear of pulling the button out of her tummy. The dream of Maryam sitting in her high chair and eagerly anticipating every bite of her food instead of dreading it; of her opening her mouth for the spoon instead of pressing her lips together and turning her head away; of her crying because she's hungry, not because she's being fed. THE DREAM.
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7 comments:

Anonymous said...

Fear not Jen the day will come. That is the great thing about babies and kids. They do things at their own pace and once they are doing the things we want them to do, we as parents then think about the old days. She will catch on and then you are in trouble. That smile of hers hides what she is really thinking but her eyes tell all.
Can't wait till we get back and can see her develop.
Love,
The Carroll Clan

chrissy said...

Unfortunately for Maryam her problems with eating won't resolve on their own. Pace isn't the issue, oral sensory dysfunction is serious and requires serious therapy. I hope she gets the help she needs.

The Preemie Experiment said...

If only it was that easy.. "do things at their own pace".

It is statements like those that causes me to speak out. The person who left that comment is simply misinformed. The general public feels that all preemies will simply catch up. Oh how I wish that was the case. Sadly, it is not always that simple.

MANY preemies have feeding tubes due to their feeding issues. Most of them do not get their tubes until they are older, when the issues become so severe that they impact growth.

MANY preemies are not born with the instinct that causes the hunger and thirst sensations.

MANY preemies have a weak swallow and choke on their food, which causes them to resist eating.

MANY preemies have such severe sensory issues that their feeding is forever impacted.

I wish you lots of luck with feeding. It is our job as parents to feed our kiddos and make them grow. It is so stressful when this job does not come naturally.

Hugs,

Stacy

Bec said...

I can't imagine how horribly difficult this whole thing must be for you. Our feeding issues are no where near that bad but they're bad enough.

I don't know what the right thing to say is, so if I get it wrong forgive me. I hope that you get your wish and that one day she really does come to you looking for food and that bed time becomes a simple affair.

Proud preemie mom said...

What a nice dream. I believe nice things DO happen to nice people, so may that dream come true for you and sweet Maryam.

I don't know that I agree with "doing things at their own pace". I don't think our kids can be lumped in with other kids. It's not that our kids need to be separated, but...well, yes they do. Those other kids that "catch on" and do things at their own "pace" probably weren't shoved out into the world MONTHS early, stuck & intubated countless times, harrassed & stimulated when they should've been floating around noiselessly in amniotic fluid. The people that say things like that must have children born full term with "regular problems". Oh how I'd love nothing but regular problems. I would LOVE it if I didn't have to literally wrestle Luke to take 1 oz of milk. It is a banner day if he takes 6 oz total. I would love it if I didn't have to spend thousands of dollars at clinics just to reteach him how to eat. I would love it if I could stop counting calories & recording every meal, & my last thought of the day wasn't "I wonder if he's dehydrated". If I did what other people said, which is "Just wait, he'll catch up" - well, he'd probably weigh 12 pounds right now at 15 months old instead of the "whopping" 18 he is - about to drop off the growth chart.

So my dream is for people to respect that feeding is a MAJOR, MAJOR issue for preemies. If your'e not sure what to say to a preemie mom, just say "You're doing an amazing job". Because you are! :)

Best - Liz

Anne, Eliza Grace's mom said...

Jennifer,

I do hope the dream of no feeding tube and a happy baby's face eating at the table with the family comes true for you one day very soon.

In the meantime, here are a few ways I cope with people who insist that Eliza will magically "catch up" or decide to snack on a chicken McNugget:

1. When someone suggests for the hundredth time "so maybe (fill in
your child's name) is just a pickey eater" tell them that to be
a "pickey" eater implies the baby eats something. If the child eats
nothing, the child cannot, by definition, be a pickey eater, the child is a "non-eater".

2. When they say "have you tried to feed her (fill in the food:
peas/pasta/squash/cherrios/etc)" look them in the eye with great
shock and say "oh my goodness, I'm supposed to give her the food to try? I was waiting for her to learn how to open the fridge herself and get her own food!"

3. When you are confronted with someone who proudly announces their
child is in the 100th percentile for weight and looks at you with pity because you kiddo is not even on the chart for her adjusted age, feel free to let them know that the 100th percentile means they have the fattest kid in town and that it is not the same as being in the 100th percentile on the SATs.

4. When they've given birth to a full size model baby and ask for
your baby's hand me downs, let them know that you've been saving a ton of money because your baby still fits into the 3-6 month size clothes even though she is 14 months actual age. Give them your address to send you their kid's hand me downs.

5. When someone stares in amazement because your petite chou chou can stand up but looks like she's only 5 months old, feel free to point out that she is extremely advanced for her age and look sadly at their full size 9 month old who can't stand up, most likely because he/she is in
that chubby 100th percentile for weight.

6. And last, but not least, feel free to gently correct those
parents whose kids were born weighing 9 pounds at 38 weeks and came home 12 hours after being born and who yet insist upon calling their kids preemies.

Anonymous said...

Let me start this out by saying that I did not mean to offend anyone at all and to also let you know that I in return was offended by some of your comments. I am the Aunt to Maryam so yes I do understand what my brother and Jen are going through. To you she is a blog and someone to correspond to. To me she is my Niece. I have spoken to Jen about my blog and I in no way meant any kind of reference to feeding. What I was offended about is that you took no time to find out what I was speaking of or who was writting it. You just jumped down my throat and assumed I was one of those ignorant people who ask you ridiculous questions. Another thing I was offended about is how it seemed very hypocritical of you to write comments about how to put downt another mother. I am a mother of children who are in the 100th percentile. But what you don't want to see is that I get the comments that you get but they are on the opposite end of the spectrum. I have had numerous mothers question me as to whether my children are mentally handicapped and that is why they don't communicate like they expect. I have had mothers tell me to limit my sons eating and to give them fat free milk and that will cut down on their "fatness or chubbiness" ( as one of you so nicely put it). What I am trying to say is don't you think you ought to find out a story before you take offense or yell at them and giving advice on, what you might think is whitty comebacks just seems to be a little mean. I have spoken to Jen about how the feeding issue is sensitive to preemie mothers so I get that you get tired of hearing comments and suggestions but I don't think you should take out your frustrations on someone until you knowexactly who they are what they are speaking of. So what I guess I am trying to say is please don't take out your frustrations on a complete stranger because you don't know what they might be going through. I hope you all can see what I am trying to communicate to you. I wish you and your beautiful children nothing but the best and I would hope you wish the same for mine, even though they are different. Aren't all children gifts from God?