Monday, December 28, 2009
Thursday, December 24, 2009
Tuesday, December 22, 2009
Sunday, December 20, 2009
Lucy also had a really good time at her Aunt Kate's Christmas party last night. There were lots of people there to see her for the first time and she was the hit of the party.
Thursday, December 17, 2009
Monday, December 7, 2009
Sunday, December 6, 2009
Thursday, November 26, 2009
Tuesday, November 24, 2009
Monday, November 23, 2009
Pulmonology would like to do a full 8-hour sleep study once she has fully recovered from her recent illness, to determine if she has sleep apnea and how much she actually obstructs her airway while sleeping at night. Unfortunately, Lucy's prolonged recovery hasn't allowed her to be home much to play and work on her neck control. Overall, she isn't as strong as she was prior to surgery. We hope to get home and stay there for longer than two weeks to really work strengthening her muscles and getting her orally interested again.
Lucy is still learning how to use her recently found voice, which is really cute, because she sometimes sounds like she's about to cry when she's just still learning. Pretty soon, she'll be babbling non-stop and we can't wait.
Saturday, November 21, 2009
Lucy has also been choking and retching more and now she is bringing up green bile. We have to wait until Monday for radiology to see if her J-tube is causing the problem. It hasn't been a very enjoyable experience for her.
Lucy also found her voice and is much more vocal now. She's learning to make sounds and loves to talk to her baby dolls and the toys she holds in her hand.
Tuesday, November 17, 2009
Monday, November 16, 2009
Monday, November 9, 2009
Lucy is so excited to get that stupid tube and tape off of her sweet face.
Saturday, November 7, 2009
Still the bigger questions are why she requires so much medication post-op to keep fluid from accumulating in and around her lungs. We continue to challenge the doctors as to what can be done for a better long-term solution. We'll keep everyone updated on how Lucy is during our hospital visit. Thanks for continually keeping her in your thoughts.
Saturday, October 31, 2009
Thursday, October 29, 2009
Lucy is now 15lbs. 9oz., 26in. long and the carseat fits her pretty well. The harness is easy to adjust and Lucy agrees that the fall colors are just right to accessorize her outfits.
Lucy also had a visit from Cara, her occupational therapist, tonight and she was certainly impressed by her progress since the last time she saw her, which was over two months ago. Lucy had fun sitting on the floor, showing off how much better her neck control is getting and playing with her toys. Thanks for the welcome home books, Cara!
Wednesday, October 28, 2009
Lucy's two new favorite games are playing peek-a-boo and pulling the glasses off of your face. She's starting to get a little of her tummy back, because most of her shirts don't fit anymore, but we still need to fatten this baby up!
Sunday, October 25, 2009
Thursday, October 22, 2009
Wednesday, October 21, 2009
The buildup of fluid could be due to inflammation, but the it's hard to say and the doctors are still unsure. It's something she can live with for the time being as long as it doesn't get worse and she continues to comfortably tolerate it. Lucy will be discharged from the hospital today, so she can get back home to play on the couch and floor, right where she wants to be.
Friday, October 16, 2009
Wednesday, October 14, 2009
If her condition does not improve within the next three to six weeks, she will have another echocardiogram of her heart to determine if she needs valve replacement. In most cases, valve replacement is an open heart operation. In some cases, the valve can be replaced without opening the chest, which is minimally invasive. We're hoping that she makes a turn for the better and can hold off on another major surgery.
Sunday, October 11, 2009
Five brightly-colored lightweight keys on a ring swing freely to make a lively click-clack sound. First Keys at Learning Curve >
The Sunny Sunshine crib toy features musical lights and sounds to engage baby's senses. Easily attaches to cribs, car headrests and play yards. Bendable sunrays light up to the music! Classical music selections from Bach, Beethoven and Mozart.
Sunny Sunshine on Amazon.com >
Lightweight, springy ball that is easy to grab, crush, catch, rattle and throw. Lots of open surfaces invite little finger exploration.
Oball Rattle on Amazon.com >
Clear Rattle with mirror and colorful beads reflect light for auditory and visual development. Textured handle is easy to grasp.
Barbell on Amazon.com >
Textured links stimulate baby's sense of touch and provide a soft, teethable surface.
Lots of Links on Amazon.com >
Mini maraca-like plastic shakers have a small grip for tiny hands and offers auditory stimulation.
Chick Itas on Amazon.com >
The Kick & Feel activity panel attaches to cribs with textures for baby's fingers and toes to explore. Music and sounds are activated by kicking or pressing the feet of the farm friends.
Kick & Feel on Amazon.com >
The Ocean Wonder Aquarium is a crib attachment that captivates with classical music, bubbling water, fish that realistically swim and seaweed that sways gently in the waves.
Ocean Wonders Aquarium on Amazon.com >
Soft, silk blanket with visual and tactile tags around its border for interactive comfort.
Taggie Blanket on Amazon.com >
Dolls are made of natural fiber grown in Peru. Soft and cuddly vibrant colors. Mini dolls are small enough to grasp and hold, even for the smallest hands. Be sure to look at the entire collection at blablakids.com.
Mini Knit Doll on Amazon.com >
Baby Einstein DVDs are created from a baby's point-of-view and incorporate a unique combination of real world objects, music, art, language and nature, introducing them to the world around them in playful and enriching ways.
Stage 1 on Amazon.com >
Stage 2 on Amazon.com >
Stage 3 on Amazon.com >
It was nice to be out in the cool, fresh October air and Lucy can't wait to go for another walk.
We want to thank everyone who supported Team Lucy Kate for this year's Buddy Walk. It was a complete success! We look forward to increasing our fundraising efforts next year when aren't spending so much time in the hospital.
We also want to thank all of the nurses and doctors who aided in Lucy's recovery. You know who you are and we can never thank you enough for everything you have done for Lucy and our family.
Lucy thanks you from the bottom of her fixed heart.
Friday, October 9, 2009
Lucy is still on oxygen to help keep her "reserve". She doesn't require oxygen to breathe, but it will help her pulmonary hypertension and overall full recovery. She's also still on a continuous feeding pump until her stomach can tolerate full individual feedings again.
Lucy has recently taken a liking to her hand. As soon as she catches sight of this thing that is attached to her body, she's in complete awe. Probably staring at the unattractive manicure that Daddy gave her.
It's just so great to be home again and getting back to the way things were.
Friday, October 2, 2009
Lucy Kate Hopkins
This is the story of Lucy, delivered 10 weeks premature, weighing only 2lbs. She was born with Downs 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.
- ► 2011 (48)
- ► 2010 (106)
- ▼ December (16)
- ► November (17)
- LaLa Land
- Pouty Lip
- 9 months!
- Bouncer Town
- Life at Home
- Lucy Windmill!
- Someday I'll Get Trashed At Prom
- Squatty Mouth
- Knock-Knock Joke
- Lucy Kate Update XVII
- Welcome Back
- Lucy's Toy Guide I
- Stroller Derby
- Down Syndrome Awareness Month
- Good To Be Home
- Home Sweet Home
- Get Me Outta Here!