Sunday, September 27, 2009

Bye Bye

Take care now, bye bye then
Another funny animation I made from two photos of Lucy.

Tiny Little Hobo

CuddlesLucy loves to wear her sock hat and collect aluminum cans.

Kickin' Legs

Cuddles"Yeah! I'll show that cow who's boss! WHERE'S MY MILK!?"


CuddlesTiny Fingers, Tiny Toes, Daddy uses his hand, to pinch my nose.


CuddlesDaddy cuddles his Bug.

Friday, September 25, 2009

Thursday, September 24, 2009

Buddy Walk Apparel

Team apparel is now available at for those who are planning to attend the Buddy Walk, Down Syndrome Indiana’s fundraising and advocacy event. The Buddy Walk is in downtown Indianapolis on Saturday, October 10th, 2009.

Buy your shirts, sweatshirts, buttons and stickers to show your support!

* All merchandise is at cost and there is no profit made from sales.

Wednesday, September 23, 2009

Lucy Kate Update XVI

Lucy has been back in the PICU for six days now recovering from acute pulmonary edema after nearly having a code blue called in the Heart Center. Most of the fluid in her lungs is now gone and the pleural effusions around her lungs are dissipating as well. She has shown much improvement over the past several days and her daily chest X-rays continue to look better.

Lucy's flow of oxygen has been decreased and she will soon be back to just a nasal cannula. We hope as she continues to recover, that she will not require oxygen when we are discharged from the hospital, but time will tell. She had been receiving her nutrients intravenously, but she's back on a continuous feeding pump and we are slowly increasing the amount so that her stomach can handle digesting food.

Lucy has been playing more, feeling better and making major progress now that staff intensivist doctors are back in control over her care and she will most likely remain in the ICU until we are discharged to go home.

Sunday, September 20, 2009

Miss Smiles

SmilesLucy had fun playing in her bouncy seat today, but just can't seem to catch a break. She hasn't been feeling well today and currently has a slight fever, so she'll be treated with two very strong antibiotics to be cautious against risk of infection. Her pulmonary edema has slightly improved for the past several days after changing the dosages of diuretics to increase the excretion of fluid in her lungs.

Lucy is also back on vapotherm, which delivers a high flow of oxygen to assist with her breathing and prevent tachypnea (increased rate of breathing) and an increased work of breathing. By definition, Lucy is in congestive heart failure. because the cardiac output is low and insufficient for her body's needs.

She may require another cardiac catheterization that will provide a very detailed look at her heart and other anatomy.

Friday, September 18, 2009

Lucy Kate Update XV

Lucy woke up this morning crying and gasping for air. Her lips and tongue were completely blue, she was cyanotic. Her oxygen saturation was in the low 40's and she was basically in respiratory failure. Lucy was given extra oxygen to bring her saturation levels back up and an arterial blood gas was quickly taken to determine what might be wrong.

pH is a scale that measures how acidic or alkaline a substance is. The scale ranges from 1 to 14 with 1 being very acid, 7 neutral and 14 very alkaline. The pH of your blood is extremely important. The ideal pH level for your blood is right around 7.35 and your body goes to enormous lengths to maintain this level. If the pH of your blood falls below 7.35, the result is a condition called acidosis, a state that leads to central nervous system depression. Severe acidosis, where blood pH falls below 7.00, can lead to a coma and even death.

Lucy's pH level this morning was 7.099.

Luckily, she was stabilized and given bicarbonate, then immediately transported back to the pediatric intensive care unit and we have been here with her all day. The ICU doctors are closely monitoring and working to determine what could have caused Lucy's respiratory status to decline so rapidly and what might be causing her pulmonary edema. We all hope to have answers soon. Please continue to keep Lucy in your thoughts.

Tuesday, September 15, 2009

Sunday, September 13, 2009

Lucy Kate Update XIV

We have been closely monitoring Lucy's pleural effusion for the past several days and it hasn't improved or increased in size. It's a minimal amount that won't require another chest tube and hopefully it will not affect her breathing. It's most likely lymphatic fluid that slowly accumulated after we resumed feeding breast milk, and since we have changed her diet, no more should accumulate.

Lucy is now being fed Enfaport, which is a 30 calorie, iron-fortified, milk-based infant formula with MCT fat for babies with Chylothorax. MCTs are an important source of calories for babies with this condition, since they are not transported in the chylous fluid and therefore will not accumulate in the chest cavity. Lucy has been fed with a nasogastric (NG) tube since birth due to prematurity and also an increased risk of aspiration. She's always had difficulty swallowing because of hypotonia, which is low muscle tone. She normally received six gravity fed bolus feedings a day and each feeding lasted about an hour.

Lucy had been showing signs of extreme abdominal distension, cramping, pain and vomiting since starting the new formula. At first, we weren't for sure what was wrong. After further investigation and a KUB X-ray, we knew she had gastrointestinal problems and requested to have a consult with GI doctors.

The doctors think Lucy might have rapid gastric emptying also called dumping syndrome, which occurs when undigested food empties too quickly into the small intestine. Treatment includes changes in formula and medication.

We meet with dietitians on Monday to determine what can be done to change the nutritional makeup of her new formula for a long-term solution. Lucy is now receiving a continuous drip feeding of Enfaport to let her stomach readjust and allow her food to slowly digest over a longer period of time. Lucy never stops eating. We have never been so jealous in our entire lives.

Saturday, September 12, 2009

Lazy Bug

Lazy Bug"I'm all reclined and comfortable in my bouncy seat. Can someone bring me the remote? This Baby Einstein DVD is boring me."

Thursday, September 10, 2009

Lucy Kate Update XIII

Lucy experienced trauma to her lymphatic vessels during her heart surgery and it has created several complications. She was moved back to the intensive care unit over the weekend to have a chest tube put in to drain the chylothorax near her left lung. Her respiratory condition improved over several days after the fluid disappeared and her diet was changed. She didn't have an increase in fluid collecting around the lungs and was eventually moved back to the Heart Center for recovery on Tuesday.

For the past several days, fluid has began to collect again, this time around her other lung. At first, it appeared the change of diet allowed the lymphatic vessels to essentially heal themselves and it was safe to resume with feeding breast milk. We're still unsure if the new fluid around her lung is due to all of this or is now something completely different.

She has continued to require oxygen the entire time to maintain a comfortable saturation level and will most likely require oxygen at home when she is finally released. We will continue to monitor her with with multiple daily X-Rays and increased diuretics. We will remain in the hospital for at least another week until we have a greater understanding what the fluid is and where it is coming from.

Sunday, September 6, 2009

Finger Gobbler!

Look out! She'll gobble your fingers!
This is a funny animation I made from three photos of Lucy sucking her thumb. Hope you laugh as hard as Sarah and I did.

Buddy Walk 2009

Team Lucy Kate is raising money and participating in the Buddy Walk, Down Syndrome Indiana’s fundraising and advocacy event. The Buddy Walk is a 2.6 mile no-fee walk along the White River canal, in downtown Indianapolis on Saturday, October 10th, 2009.

We are walking for our hero and the strongest person we know, our daughter Lucy.

We ask you to please join the team and raise money for a wonderful cause that helps to support individuals with Down's Syndrome and their families, so Lucy and other children can live long, prosperous and fulfilling lives.

Lucy thanks you from the bottom of her heart.

Saturday, September 5, 2009

Lucy Kate Update XII

Lucy is back in the pediatric intensive care unit (PICU). She has a Chylothorax, which resulted from trauma to her lymphatic vessels during surgery. Lymphatic fluid (chyle) has been slowly accumulating inside of her pleural cavity, putting pressure against her lungs and preventing her from oxygenating her blood efficiently.

She now has another chest tube on her left side to quickly drain the fluid away from her lungs. Omitting fat from Lucy's diet will be essential for the chylothorax to eventually stop and the lymphatic vessels to heal themselves. We will remain in ICU for the week to monitor her progress.

Friday, September 4, 2009

Bamboo Eater

Bamboo EaterLucy impersonating a tiny panda.

Good job, Lu. Keep up the good work.

Cutie Pie

Cutie Pie"Will someone take this thing out of my nose already?"

"It's driving me crazy!"

Thursday, September 3, 2009

Lucy Kate Update XI

Lucy still has fluid near her left lung inside the pleural cavity. It's constricting how far her lung can expand to oxygenate her blood and she will continue to receive oxygen through a nasal cannula until it dissipates. She's being given a diuretic to help force the fluid out of her body, but it's obviously not targeting the fluid directly in her lung.

Overall, her recovery is still slowly progressing forward. The echocardiogram of her heart that was taken yesterday showed the tricuspid valve and mitral valve have some regurgitation, so she could be a candidate for valve replacement once she gets older, but it's nothing alarming at this point. The echocardiogram also showed a small Ventricular Septal Defect (VSD) still in her heart, but again, nothing alarming yet. We are still waiting to speak with the cardiology surgery team and surgeon about the results.

Lucy has been extremely fussy and crying a lot for the past five days. We recently stopped medication that we believe was causing her increased irritability. She is almost back to her regular feeding amounts and schedule. She's finally keeping milk down and working to get her weight back to where she was before surgery. She'll be a chunk again in no time.

We will be discussing our plan with the doctors today to determine a goal for leaving the hospital. Lucy is growing tired of laying in bed at the hospital and is ready to have more fun at home. I can't blame her, we are too.

Wednesday, September 2, 2009


GigglesLucy playing with her Sunny Sunshine and smiling for Daddy.

Tuesday, September 1, 2009

Lucy Kate Update X

Lucy’s recovery has gone well. We have been in the Riley Heart Center for four days now and we’ve made progress to get her medications and feeding schedule/amounts adjusted. She’s feeling a little better and is mostly smiles now, but has been extremely fussy and has had periods of constant crying. Her sleep cycle was completely backwards, but we’re working to get her back on track. She’s still on a nasal cannula with ¼ liter of oxygen, which is minimal. Her oxygen saturation drops when she is in a deep sleep, so she’s getting an echocardiogram today to determine what might be causing that.

After we get her off the low amount of oxygen, we’ll be very close to going home and taking care of her there. She still has a lot of time to recover and get her strength back. She lost nearly three pounds during surgery, which doesn’t sound like much, but it equates to about 20% of her body weight. To put that in perspective, I would have lost 35 pounds, so it was obviously very traumatic to her body and she’ll need months to fully recover, but we’re in no hurry.

Lucy will continue to recover in the Heart Center and hopefully she can come home sometime this week and be right where she belongs.