[blparent] Declan and his feeding issue

Thu Sep 27 20:16:19 UTC 2012

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

Truth is tough. It will not break, like a bubble, at a touch; nay, you may 
kick it about all day like a football, and it will be round and full at 
evening.--Oliver Wendell Holmes, Sr.
-----Original Message----- 
From: Bridgit Pollpeter
Sent: Thursday, September 27, 2012 12:10 PM
To: blparent at nfbnet.org
Subject: [blparent] Declan and his feeding issue

Yes, the feeding problem is expected to continue, at least for a time.
He's already pulled his nose feeding tube out several times, and sighted
or blind, I don't want to deal with that at home, smile. Plus, the nose
tube isn't fun for anyone, and since this issue has no current
time-frame, it would be better, and less irritating, to have the
G-button. Declan's feeding issues are that he will only nipple around 30
mililiters at the most and he's suppose to be eating at least 80
mililiters. He usually does okay initially but at some point, he won't
nipple more. Hence requiring a feeding tube right now, so he still is
getting his required amount of food. He's hungry and shows all the signs
of hunger, and after nippling whatever amount he decides too at a given
feeding, he's still hungry, but they can't figure out exactly what is
happening. Some think he's still developing his nippling skills since he
started nipple feeding late, and others think something is causing him
discomfort and he therefore refuses more after a certain point. In
general, my observation is that he will do okay initially with the
coordination of sucking, swallowing and breathing, takes in a certain
amount, then burps and this is when everything goes south. He becomes
fussy, often irritable, giving clear signs he's done with attempting the
nipple, but he's still hungry. We don't want to create an oral aversion,
if we haven't already, so we aren't pushing it, however, this is our
last obstacle before we can even consider going home. If he does not
improve by the end of the week, we will have a consult with surgery
early next week and begin some tests, like a swallow test among others,
before proceeding to the actual surgery. If we do the G-button, we will
continue to introduce nippling, but Declan will have the button so we
can provide ample food and nutrition until he can nipple without the
button for back-up. We will work with a speech pathologist to ensure
he's developing the skill properly. My sense is that he needs to be
home, and I think this will help tremendously. He needs mommy and
typically does very well when I'm there. I really didn't want to get to
this option, but it seems this is where we are going. This issue is
expected to resolve, it's just a matter of time, and no one can say how
much time. Declan met with occupational and physical therapists
yesterday, and he scored off the charts in everything except eating.
They were really impressed at how advanced he is for his age, which was
exactly one month yesterday, grin. He's able to track things both
visually and audibly very well and he's moving more than most infants do
at this stage including moving his head and neck. He's already showing
curiousity in his surroundings, and he can focus well for a certain
period of time. So everything seems great with Declan except this eating
issue. Hopefully it turns around soon.

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: 15
Date: Thu, 27 Sep 2012 12:01:44 -0400
From: Tracey Turri <turri.tracey at gmail.com>
To: Blind Parents Mailing List <blparent at nfbnet.org>
Subject: Re: [blparent] Question- requesting assistance
Message-ID:

<CAPqZp4wFVU0Jiw8OYV9GmYb8wSm-cKXo6ZV5RdqjYn1Q6XocUg at mail.gmail.com>
Content-Type: text/plain; charset=ISO-8859-1

Doesn't Declen have a feeding tube all ready?  If so, why are they
moving to implant a surgical tube in his stomach?  Are they expecting
his feeding problems to continue? The reason I'm asking is because when
I was a kid I had to have a nazogastric (spelling) tube in my nose for a
time, and acording to my surgen it would be a lot easier for my parents
to handle and keep starel, both of my parents are also blind. If Declens
feeding issues are expected to continue in the long turm I don't know
witch one would be better for him.  I just figured I would let you know
that you should be able to take him home on an external feeding tube. I
will be keeping your family in prayer, and if you have any questions,
you can contact me off list. Tracey

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