Saturday, October 31, 2009

LaLa Land

Lucy & GingerLucy and Ginger had too much Halloween candy to eat and passed out after they came down from their sugar high.

Pouty Lip

Pouty LipLucy is pouting about taking a nap.

Thursday, October 29, 2009

9 months!

9 months!Lucy is 9 months old today and now has a big girl car seat. It's a Safety 1st Complete Air Convertible Car Seat with revolutionary head protection that shields against side impact and also adds additional neck support.

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

Bouncer Town

Lucy loves to bounce!

Life at Home

It's great to be back home. It's the small things that make a difference, like a floor with carpet to play on and a comfortable couch. But life is still busy. Lucy normally has two weekly doctor appointments for chest X-rays to monitor her progress. She is still on continuous feedings that are refilled every four hours and she has 12 medications that are given multiple times around the clock. It's definitely the best full-time job you can have, but a very busy one at that.

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

Lucy Windmill!

If Lucy moves her arm any quicker, she'll be flying faster than you can say Wright Brothers.

Someday I'll Get Trashed At Prom

Drinking & DrivingLucy has had a little too much to drink, but insists she's "okay" to drive.

Thursday, October 22, 2009

Squatty Mouth

Squatty MouthLucy is storing food in her cheeks for winter.

Knock-Knock Joke

FunnyLucy's neck control is getting much better now and she can sit and hold her head up with some assistance. She has come a long way from her days of surgery. She's also rolling onto her side and belly. Pretty soon, she'll be crawling!


StorytimeLucy sitting sweetly on Mama's lap.


Hey!"I want to speak to the manager around here!"

Wednesday, October 21, 2009

Lucy Kate Update XVII

Lucy has been in the hospital again for five days now and her work of breathing and heart rate has improved with more management of medicine. She was initially admitted to treat the minor to moderate effusions around her lungs with IV diuretics, but those were unsuccessful to remove the excess fluid. She is now receiving more chloride, which helps her Nasojejunal (NJ) Tube diuretics work more effectively. Her dosage of Atenolol, which helps her cardiac function, hypertension and heart rate, was nearly doubled.

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

Welcome Back

Lucy has been admitted back into the hospital to get the fluid around her lungs under control with IV diuretics. The intravenous dosage will be more effective and much quicker. The question is why is she having such a difficult time with recovery and what is the underlying factor causing the excess fluid. An echocardiogram will show if the regurgatatuon from her valves is contributing the most or if it is a combination of factors.

Wednesday, October 14, 2009


Lucy had another cardiology appointment today to follow up on the moderate effusion around her left lung. Luckily, the X-ray showed that it has improved and her diuretic dosage was increased to hopefully keep her from being admitted back into the hospital. The main concern is her prolonged requirement for a high dosage of diuretics and if the regurgitation from the tricuspid and mitral valves are causing the excess collection of fluid.

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

Lucy's Toy Guide I

Here's a list of Lucy's favorite toys. She has composed this comprehensive list to help other babies find toys that help develop their tactile, motor and auditory skills. She hopes your baby enjoys playing with these toys as much as she does.

Learning Curve First Keys

Learning Curve First Keys
Five brightly-colored lightweight keys on a ring swing freely to make a lively click-clack sound. First Keys at Learning Curve >

Infantino Sunny Sunshine

Infantino Sunny Sunshine
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 >

Oball Rattle

Oball Rattle
Lightweight, springy ball that is easy to grab, crush, catch, rattle and throw. Lots of open surfaces invite little finger exploration.
Oball Rattle on >

Bright Starts Barbell

Bright Starts Barbell
Clear Rattle with mirror and colorful beads reflect light for auditory and visual development. Textured handle is easy to grasp.
Barbell on >

Bright Starts Lots of Links

Bright Starts Lots of Links
Textured links stimulate baby's sense of touch and provide a soft, teethable surface.
Lots of Links on >

RhythMix Chick Itas

RhythMix Chick Itas
Mini maraca-like plastic shakers have a small grip for tiny hands and offers auditory stimulation.
Chick Itas on >

Fisher-Price Kick & Feel Musical Farm Friends

Fisher-Price Kick and Feel Musical Farm Friends
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 >

Fisher-Price Ocean Wonders Aquarium

Fisher-Price Ocean Wonders Aquarium
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 >

Carter's Security Taggie Blanket

Carter's Security Taggie Blanket
Soft, silk blanket with visual and tactile tags around its border for interactive comfort.
Taggie Blanket on >

blabla kids Mini Knit Doll

blabla kids Mini Knit Doll
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
Mini Knit Doll on >

Baby Einstein Stage 1-3 DVD Collection

Baby Einstein Stage 1-3 DVD Collection
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 >
Stage 2 on >
Stage 3 on >

Stroller Derby

Stroller DerbyLucy and her ugly doll enjoyed getting outside for their first walk around the neighborhood since August. We loaded down the stroller with an oxygen tank and a continuous feeding pump and hit the road. Lucy also test performed her new fleece Columbia jacket. Overall, she thought it kept her core temperatures warm, the zipper not only works well, but it also doubles as an ugly doll attachment. Functional and fashionable!

It was nice to be out in the cool, fresh October air and Lucy can't wait to go for another walk.

Down Syndrome Awareness Month

October is Down Syndrome Awareness Month. Down's Syndrome occurs when an individual has three instead of two copies of the 21st chromosome. Be sure to support your National Down Syndrome Society local chapter and make a donation or sponsor a team for the Buddy Walk! Over the last thirteen years, the Buddy Walk has become an advocacy event for Down's syndrome. It raises awareness and brings great people together for a great cause.

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

Good To Be Home

It's been a week now since we were discharged from the hospital and Lucy is much happier now that we can roll around and play on the floor. Carpet is such a luxury! Lucy has had a doctor appointment every day this week, so she's been very busy keeping up appearances.

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

Home Sweet Home

Home Sweet Liquor CabinetAfter 46 days in the hospital, Lucy's heart is fixed and she's finally home, right where she belongs.

Thanks again everyone for your love and support. You have made this experience something we’ll never forget.

Get Me Outta Here!

Get Me Outta Here!"I'm ready to go! Let's hit the road!"