Lucy resting in Riley PICU and holding her rattle, Madeline.
Happy Belated Down Syndrome Awareness Month
11 months ago
Thursday, August 20, 2009
Madeline Moussette
Lucy resting in Riley PICU and holding her rattle, Madeline.
Labels:
heart surgery,
Lucy Kate,
Riley
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Lucy Kate Hopkins
This is the story of Lucy, delivered 10 weeks premature, weighing only 2lbs. She was born with Down’s Syndrome and multiple congenital heart defects, spending 75 days in the NICU. She has underwent two open heart surgeries in August 2009 and June 2010 to repair her Atrioventricular (AV) Canal Defect, Ventricular septal defect, double outlet right ventricle, mitral valve and extra superior vena cava. We hope she touches your heart as much as she has touched ours.
Archive
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2009
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August
(40)
- Cowgirl
- Sweet Eyes
- Lucy Kate Update IX
- Mama Time
- Lucy Kate Update VIII
- Lucy Kate Update VII
- Really Drowsy
- Lucy Kate Update VI
- Lucy Kate Update V
- Powerpuff Girl
- Boy crazy
- Dinomite!
- Mama & Lu
- Lucy Kate Update IV
- Lucy Mouse
- Lucy Kate Update III
- Lucy Kate Update II
- Madeline Moussette
- Lucy Kate Update
- Stay Puft Marshmallow Lucy
- Lu & Mama
- Bouncy Seat
- Mr. Ray Charles, Ladies and Gentlemen
- Wired Up
- Sweet Dreams
- Finger Meats
- Home Sweet Home
- I Heart You
- Lucy's Blessing
- Daddy's Little Lu-Lu
- Green Ball
- Rings Gymnast
- Kick Mat
- Crib Cam
- Rolly Poly
- Baby Rattle
- Daddy Smooches
- Really Drowsy
- Little Drowsy
- Cardiac Catheterization
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August
(40)
Reece's Rainbow
Lucy's Friends
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We are back!12 years ago
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Hello???? Is Anyone Out There???12 years ago
2 comments:
Riley, as in Indianapolis. Oh my goodness, I didn't see this before. My name is Rebecca Phong and I work for Down Syndrome Indiana. I am not sure if you have talked to any of my co-workers or not, but we have an amazing parent packet we can get to you if you haven't already received one.
We also love to lend an ear if you need to chat just to have someone to talk to while you still in the NICU.
Our website is: www.dsindiana.org
317-925-7617, Rachel Wood is our outreach coordinator, she's amazing. Please give us a call if you have questions, or needs, or whatever. We are here for you.
p.s. what an amazing photo of your sweet Lucy.
I found your blog through Rebecca at DSI (Down Syndrome Indiana). I have "caught up" with all you have been going through since you took 5 pregnancy tests on August 7th.
We live in Fishers and have a little girl, Whitney, who was born August 25th (almost one year ago). She also has Down syndrome and had her open-heart surgery on Dec. 1st with Dr. John Brown at Riley! Isn't it a miracle to be able to fix such a tiny little heart? Just like Lucy, Whitney had an ng tube until about 6-8 weeks after her open-heart surgery. Dr. Brown told us we would really notice a change about 6-8 weeks after surgery and it was just about at the 8 week mark that she started taking a little bit more from the bottle (we would try every time before feeding her through the ng to give her a bottle)... it was like she suddenly had the strength and was able to take a bottle! (just wanted to share that, because I am sure the same will be true for little Lucy!)
I will say some prayers for you guys and for little Lucy - she is beautiful and you guys have done an amazing job with her!!!
Our blog (which has not been updated since July due to major computer issues) is:
http://www.acbyron.blogspot.com
I will keep checking in on your blog and hope to see great progress from little miss Lucy!!!
Sincerely,
Laura Byron
(Anne and Whitney's mom)
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