[blparent] Declan and his feeding issue

[Bridgit Pollpeter]

Jo Elizabeth,

No worries, you aren't overstepping. A lot of people have made a similar
suggestion as you, but the issue, unfortunately, isn't that simple. No
he wasn't a premie, but somehow became very sick within 24 hours after
birth. No one really knows why. He's overcome a lot in the last couple
of weeks. Declan becomes hungry and wants to eat. Usually, he initially
takes to a bottle and will drink a small amount. At some point, it's as
though something is painful or at least discomforting. They thought it
was reflux and perhaps he's still developing his swallowing and
breathing, but no one is really sure what the problem is. His ability to
drink is just fine. He also tolerates the full 80 ml's through the tube,
so it's not a matter of too much food, which a lot of people think. He
wants to eat, and even when he's done with the bottle, he's still
hungry. By this point, a baby like Declan should be eating a set amount,
but he's a little puzzling. Eighty mililiters is about 2-1/2 ounces,
which for a baby his size, which is nine pounds, is the minimum amount
he should be eating. Again, the amount doesn't seem to be the problem.
We've had OT, PT and speech path look at him, and no one can figure out
what his problem is. Today we move forward with some test like the
swallow test and upper GI probe. We're on our way to the G-button, which
I hoped to avoid, but he needs to come home; it's been five weeks, and
beyond this issue, he's well enough to come home. At some point, he
needs to come home, and since he can't eat enough from a bottle,
unfortunately this option is the best option so he continues to get
nutrition and grow.

Sincerely,
Bridgit Kuenning-Pollpeter
Read my blog at:
http://blogs.livewellnebraska.com/author/bpollpeter/
 
"History is not what happened; history is what was written down."
The Expected One- Kathleen McGowan

Message: 2
Date: Thu, 27 Sep 2012 14:16:19 -0600
From: "Jo Elizabeth Pinto" <jopinto at msn.com>
To: "Blind Parents Mailing List" <blparent at nfbnet.org>
Subject: Re: [blparent] Declan and his feeding issue
Message-ID: <SNT116-DS283768CD4819EFD2EBFE0AC830 at phx.gbl>
Content-Type: text/plain; format=flowed; charset="iso-8859-1";
	reply-type=original

You and Ross and Declan will continue to be in my prayers.  I'm sure
getting 
him home will make a big difference.  Very often, babies are well cared
for 
in the NICU, but there's something about getting home with their parents
in 
a quieter, one-on-one setting that gives them the will to thrive.  I'm
not 
just saying that, either, it's been scientifically documented.

I can't recall, was Declan a preemie?  I'm wondering because one of the
very 
last things to develop in utero is the valve between the stomach and the

esophagus.  I can't remember, but I think it tends to develop between 28
and 
30 weeks.  How often is he supposed to take 80 milliliters?  I'm no
doctor, 
but could he take less at a time, more often?

I thought of this because my mom often tells the story about how she
took me 
home from the hospital with instructions, she believed, that she had to
feed 
me two ounces every two hours around the clock.  I had serious feeding 
issues, so she said it took 45 minutes to get two ounces down, and then 
she'd clean me up, fix the next bottle, turn over an egg timer and doze
for 
an hour or take care of my brother or whatever, and then start it all
again. 
At the next checkup a few weeks later, the doctor was shocked at how
much 
weight I had gained.  When my mom told him about the routine, he said he

meant I was to take two ounces every two hours when we were both awake.

Forgive me if I'm overstepping.  Your doctors sound very supportive and 
knoledgeable.

Jo Elizabeth