Smiling at Mama

I ♥ Santa

Lucy is really excited to open presents.

Ribbons & Tinsel

It was really fun to watch Lucy open some of her presents for her first Christmas.

I See You

Lucy peeking through her ExerSaucer toy.

Mohawk

Sweet little Lu-Lu Bug with her wild, crazy mohawk.

Toobie

Doing what she shouldn't be doing by grabbing her continuous feeding tube.

Crazy Hair ExerSaucer

Santa brought Lucy's ExerSaucer a day early this year.

Santa

To quote the expression on Lucy's face:

"WHO ARE YOU!?"

Dressed Up for Santa

We actually took Lucy to the mall to sit on Santa's lap. It was quite an experience to take her out into public and the mall of all places. She did such a good job sitting on Santa's lap and didn't scream her head off like we thought she would.

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.

Lucy Present

DO NOT OPEN UNTIL CHRISTMAS!

Happy Holidays

Merry Christmas, from our family to yours. Hope you enjoy this year's Christmas card.

Frog Legs

Lucy loves to gobble up Marty's legs.

The Boss

"Now, listen up frog, I'm the boss around here and what I say goes."

Bumbo Baby

Lucy is finally sitting up in her Bumbo Seat like a big girl!

Teeny Elves

Lucy and Mama cuddling by the Christmas Tree.

Christmas Time

Lucy has been having tastes of bananas and pears, practicing sitting up all by herself in her Bumbo seat and decorating for Christmas. She is so excited for Santa to come visit her for her first Christmas. She loves staring at the lights on the Christmas tree and isn't quite sure what to think of all of the decorations in the house. She thinks the decorations look pretty good, but is a pretty big critic when it comes to interior design.

Happy Thanksgiving!

This year, we are most thankful for our daughter, Lucy, who has shown us what the true meaning of life really is.

Butter Ball Turkey

Yay! Happy Thanksgiving, everyone!

Big Spoon

"Does this thing go in my mouth, Mama?"

Dinnertime

Lucy sitting up in her new high chair, ready to try eating pears like a big girl. She doesn't like smooth spoons and textures, so she likes to eat from her Nuk brush.

Back Home Again

Lucy was discharged from the hospital today and we brought our little Butter Ball turkey back home again just in time for Thanksgiving. It will be nice to not be in the hospital during the holiday. Lucy still has a lot to do to get ready for the big feast. We look forward to spending time with family and getting back to our normal once again.

Feeling Better

Lucy is out of the intensive care unit and in the Heart Center again, which has become our second home. She seems to be feeling better and as always, turned herself around without much intervention from doctors. Although she did require A LOT of oxygen support at first, it could have been a virus or possibly a reaction to her H1N1 vaccination, with swelling or narrowing of her trachea. We certainly will not be giving her the H1N1 booster shot.

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.

Pudge Face

Lucy is storing food in those fat little cheeks and her face is getting round again.

The Great Silly Houdini

Once again, Lucy has fooled us. The first night in the intensive care unit was pretty scary though. Our goal for the night was for Lucy to not be ventilated. She was requiring a large amount of oxygen to keep her saturation at a safe level. She was obstructing her airway in her sleep and that was causing an increased oxygen at night. By the next few days, she started to turn around and we were able to decrease her oxygen. We are now out of the ICU and in the Heart Center at Riley where accommodations are little more cozy.

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.

LaLa Land

"It's not easy to get all of this beauty sleep."

Leg Warmers

Lucy and Marty hanging out with the new leg warmers that her good friend, LC Boom Boom sent to her. Thanks LC!

Ambulance Ride

Lucy scared us earlier today. She was on her way to a doctor visit and stopped breathing. Luckily, she was in the hospital parking garage when she was in respiratory distress. She was taken immediately to the ER and then transferred via ambulance to our regular hospital. Lucy is doing a little better and we're currently in the ER at Riley Hospital with her waiting to be moved to the pediatric intensive care unit. We will try to keep everyone updated on her status as we learn more.

Are these mine?

Lucy received new leg warmers from her favorite pal, LC Boom Boom Thanks so much LC!

Couch Potatoes

Lucy and Marty the Frog love to tell each other secrets.

Maracas

"Crank up my oxygen, Mom. I'm out of breath from shaking my maracas."

Tiny Musician

"So what you're saying is, if I smash my hands on this thing it will light up and play music? Interesting."

Success!

Lucy's surgery was a success and she's now resting back in our Heart Center room. She was sedated by anesthesiology and was put on a ventilator during the surgery. She came out of sedation and was breathing on her own, alert and playing immediately after. She's still in some pain, but she got a dosage of Tylenol and is now taking a well deserved nap. They placed the J-Tube in Interventional Radiology, so she has just one tube into her jejunum for now and she'll have to come back in 6 weeks to have the additional G-tube port placed after the wound has had time to heal. The hole will have to be stretched to allow for two ports.

Lucy is so excited to get that stupid tube and tape off of her sweet face.

In the Hospital Again

Lucy is requiring more oxygen and has more fluid in her lungs, so we're back in the hospital. She was admitted Wednesday and unfortunately we have made little progress. She is most likely going to be scheduled to get a gastrojejunostomy feeding tube. A GJ tube is radiologically inserted through a small incision in the abdomen into the stomach, one port in the stomach and the other threaded into the jejunum. Her medicine will be delivered to the stomach and feedings will still be continuous into the jejunum. This will help get the tape off of her face so we can smooch her sweet cheeks. Obviously, not going to fix most of her problems, but we will be able to deliver her medicine more effectively and not worry about how well they are being absorbed in the intestines. Eventually with time, we hope to get back to bolus feedings with just using the G tube.

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.

LaLa Land

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

Pouty Lip

Lucy is pouting about taking a nap.

9 months!

Lucy is 9 months old today and now has a big girl car seat. It's a Safety 1^st 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!

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!

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

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

Squatty Mouth

Lucy is storing food in her cheeks for winter.

Knock-Knock Joke

Lucy'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!

Storytime

Lucy sitting sweetly on Mama's lap.

Hey!

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

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.

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.

Troubles

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.

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

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

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 >

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 Amazon.com >

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 Amazon.com >

Bright Starts Lots of Links

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

RhythMix Chick Itas

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

Fisher-Price Kick & 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 Amazon.com >

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 Amazon.com >

Carter's Security Taggie Blanket

Soft, silk blanket with visual and tactile tags around its border for interactive comfort.
Taggie Blanket on Amazon.com >

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 blablakids.com.
Mini Knit Doll on Amazon.com >

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 Amazon.com >
Stage 2 on Amazon.com >
Stage 3 on Amazon.com >

Stroller Derby

Lucy 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.

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.

Home Sweet Home

After 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!

"I'm ready to go! Let's hit the road!"