Thursday, November 26, 2009

Happy Thanksgiving!

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

Butter Ball TurkeyYay! Happy Thanksgiving, everyone!

Big Spoon

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


DinnertimeLucy 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.

Tuesday, November 24, 2009

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.

Monday, November 23, 2009

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.

Saturday, November 21, 2009

Pudge Face

Pudge FaceLucy 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

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

Leg Warmers

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

Tuesday, November 17, 2009

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.

Monday, November 16, 2009

Are these mine?

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

Couch Potatoes

Couch PotatoesLucy 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

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

Monday, November 9, 2009


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.

Saturday, November 7, 2009

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.