[tri-med] Introducing Keren Elyse

Greetings from Southeast Michigan!

My husband Kraig and I have been lurking on the listserve for about a 
month now, planning to jump in at some point and introduce 
ourselves--figured Christmas was as good a time as any :) .

On September 27 of this year, we became the proud parents of Keren 
Elyse, who is full trisomy 18.  We knew prior to her birth that there 
was the potential of a chromosomal disorder (from ultrasound), but 
didn't know exactly what, and chose not to find out.  We were blessed 
with an extremely understanding, caring and supportive doctor, and have 
since then had only good things to say about the doctors with whom 
we've met.  I know that's not always the case, so we're pretty 
thankful!  We also have an incredible family who's given us tons of 
love and support, not to mention a strong church family.  And above all 
that, a God who is teaching us amazing, challenging lessons.

Keren is a sweetie--and a marvelous little girl already.  She was born 
full term, 4 lbs, 10 oz., and actually for a T18 baby has very few 
physical problems.  The only prob with her heart is a bicuspid aortic 
valve and it's behaving like a normal valve, so in essence, no heart 
problems.  As far as we know her other organs are all functioning 
properly.  She also has a contracted hand, and a club foot, both of 
which we're having worked on, and they're responding well.  Keren's a 
strong one--living   up to the meaning of her name, "power".  She can 
hold her head up pretty well, and squirms like crazy (particularly when 
we're giving her her bottle).  Also, at two weeks ago, she was still 
gaining weight on a "normal" growth curve, hitting twice her birth 
weight!

For her first month, she was on a feeding tube (oral), but caught on to 
sucking and swallowing, and has since been bottle-fed.  We were excited 
about that when that first happened, but it has definitely become one 
of our greatest challenges.  That, and getting good air flow through 
her nose.  She tends to sound really congested, and yet we can't get 
much out when we bulb it.  I know her nasal passages are tiny, and that 
probably augments any winter-time swelling, etc.  We'll be seeing an 
ENT next Monday to look into that a little better, 'cause it does seem 
to be one of the hinderances to her eating well (ever try to suck on 
something when you can't breathe through your nose?).  But we don't 
know if that will give us any answers or not.  Recently, Keren's been 
fighting just about every bottle, squirming, batting, crying--and it's 
been a struggle to make sure she gets her minimum daily requirement.  
She does get hungry, but is satisfied after about 20 cc's (and she 
should be taking about 3 oz per feeding), so the rest of the bottle is 
a push.  We've tried all sorts of things: oxygen cannula during the 
bottle to help get air through the nose, different formulas, etc.  She 
went through a stage a few weeks ago of spitting up a lot, but over the 
last week this has greatly diminished.  Gassy stomach after feeding has 
seemed to increase, though, and she's had pretty hard stool since going 
completely to formula (she had some of my breastmilk up to a few weeks 
ago).  Usually, though, she's very quiet and content when she's not 
eating--alert, or sleeping.

So that's where we're at today.  And I guess we're partly putting this 
out, both as a greetings and introduction, and a plea for any 
experience and advice that you all can provide.  Any ideas about the 
feeding prob?  We know that feeding is a big issue with trisomy babies 
(loved the whole discussion about feeding tubes!), but is one part of 
that sometimes just little desire to eat?  And if so, what are good 
steps to take to get the baby all the food he or she needs?  She's 
totally capable of eating it on her own...she just won't!  Can she have 
forgotten?  Does that happen with trisomy kids?

So that's us--or at least, Keren!   She's our firstborn (we had two 
miscarriages last year).  Kraig's a  civil engineering PhD student and 
works at his university.  My background is high school English teacher 
and more recently, English as a Second Language tutor (much more 
enjoyable!), and for now, most importantly, Mom to Keren!  You can see 
first week photos of Keren, and read more about our journey with her on 
our website:  http://webpages.eng.wayne.edu/~ad6075

Enjoy!

We look forward to getting to know you and your families better!

Loren, wife to Kraig, mom to Keren (T18)


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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