[tri-med] Re: heart surgery

Hi Pam and Darrell

Our daughter Esprit has full T18 and is 17 months old.  We rushed her home from 
the hospital at one week, because we were told her oxygen saturation was 
falling and she was going to die.  She did have some apnea episodes in the 
first month of life, but pulled herself through on her own.  Esprit has a 
severe heart defect...a large VSD, ASD and PDA.  When we met with the 
cardiologist to discuss operating we found out that her lungs had 
compensated....she has pulmonary hypertension and all is balanced, therefore 
operating made no sense for her.  Esprit is on no medications except for a mild 
laxative.  It is a whole lot different from the picture that was described to 
us by all in the medical field.  We were told she would never even recognize 
us.  I knew this was wrong immediately when I was able to pick her up.  I was 
her mom...there was no doubt she knew me by smell and even now when I pick her 
up she presses her nose to my cheek and takes me in.

Esprit has eaten on her own since she was 3 months old.  She had breastmilk for 
a year and then we switched to formula.  She learned to hold her own bottle and 
feed herself.  She is now transitioning into solids and at this rate will be 
feeding herself by age 2.  Esprit has such personality and is pure joy to all 
that meet her.  Her smile lights up a room and she (although mostly deaf) 
communicates so much with her eyes.  She also uses sounds to let me know what 
she needs.  She knows when I put her in her high chair she is going to eat, and 
she stops complaining for food.  She can prop sit quite well and she rolls from 
side to side.  She is tiny - at only 13 pounds - but soooo stubborn and tough.  
She plays with rattles and giggles at her.  She even reaches for the birds and 
gently holds them in her hand.  She is making progress with her fine and gross 
motor skills to the point that I really don't know what to expect in the long 
run.  Signing?  Walking?

Esprit is a very happy child who is developing at her own pace....her life is 
meaningful in so many ways. The truth about trisomy babies is they can and do 
develop if given a chance. 

Please let me know if I can be of any more help.

Sincerely,

Trisha Willingham
Charlottesville, VA 

-----Original Message-----
From: pam&darrell <bifman@xxxxxxxxxxxx>
Sent: Sep 27, 2004 6:57 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: heart surgery

just email something to me-if you can't send a picture, just a note.  i will
be giving stuff to doctors on wednesday
pam
----- Original Message ----- 
From: <Kjehjohns@xxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Monday, September 27, 2004 6:30 AM
Subject: [tri-med] Re: heart surgery


> In a message dated 9/27/2004 3:02:15 AM Eastern Daylight Time,
> ecartis@xxxxxxxxxxxxx writes:
> i would really appreciate it if anyone who is willing would send a photo
and
> a description of their child listing what they can do , how they function
and
> do have quality of life.
> PAM:  Emily has T13 Mosaic and she had ASD, VSD and PDA repaired by open
> heart surgery at 3 months old...weighing 4 lbs. and with congestive heart
failure.
>  She is now 8 years old and walking and talking and full of life!!  I
would
> be glad to help.  Just let me know who and where to send a pic and note??
>
> Jennifer - Mom to Emily (8) T13 Mosiac & Hannah (5) Michigan, USA
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>


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


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

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