Pure Celebrity Gossip!

"OH NO SHE DIDN'T!"


"Where's George Clooney? Is George Clooney in here?"




Sarah and Lucy reading some age-appropriate material on the couch.

Team Lucy Kate

Today, Lucy needs your help. She is raising money for the March of Dimes foundation, the leading nonprofit organization for pregnancy and baby health. All she asks, is to donate $6 dollars, which is four rolls of nickels, to the March of Dimes. Your donation will sponsor her to walk in the March for Babies and with your support, you will help her reach her goal.

We appreciate your support for Lucy by your contribution to this wonderful cause. You have touched our hearts and now it's time for Lucy to help the hearts of the half a million babies born too soon each year. We thank you from the bottom of our hearts, big and small.

Love always from your bestest internet friends,
Josh, Sarah & Lucy

Little Miss Gigglesworth

MMR Rash

Lucy got her 12 month MMR shot two weeks ago and has had a severe full body rash for five days now as a reaction. Her poor face is covered in bright red dots, it almost looks like she has measles. Luckily, today she's starting to feel better.

Prop Comic

"But seriously though guys, I'm here all night. Be sure to tip your waiters and waitresses. Try the veal."

Invasion of the Glasses Snatcher

Lucy snatching Daddy's glasses right off his face.

Tiny Terror

Lucy planning world domination at the controls of her ExerSaucer.

Corn Beef

Lucy is clad in green and partaking in mischief.

She enjoys corn beef & cabbage and green milk for her feeding tube.

Wee Little Leprechaun

"Just look at me teeny hat!"

Back Home

We're finally back home. Lucy's morning labwork came back normal, so they discharged her from the hospital. She feels a lot better today and the site around her GJ feeding tube is much less swollen and red, and we can touch it without her yelping out in pain.

Lucy missed all of her dolls and playing in her ExerSaucer. She's yelling at Baby Einstein on the television right now, so she's back to the usual.

No G-toobies

Unfortunately, we wasted two days in the hospital. The doctors were unable to switch Lucy's tube at our developmental pediatrician's hospital, so we are scheduled to go back to the doctor who originally placed Lucy's J-tube on the 15th. That will be a quick outpatient visit and should only take a couple of hours.

It will take some time to truly know if Lucy requires the Nissen surgery, after we get milk and food back into her belly. She would have a gastric emptying study and an upper G.I. before we would proceed further with any surgery.

But all was not wasted while we were in the hospital. Lucy is now only on 1 liter of oxygen and tolerating it well. We hope to have her off of oxygen and one more toobie free by the end of summer.

G-Tube

Lucy is scheduled for an inpatient hospital visit next week to get her G-Tube placed and possibly Laparoscopic Nissen surgery, to help correct her severe reflux, Gastroesophageal reflux disease (GERD).

The surgery will strengthen the valve between the esophagus and stomach, which stops acid from backing up into the esophagus easily. We hope the surgery can be videoscopic, which is less invasive with a quicker recovery time. If left untreated, it can cause ulcers and narrowing of the esophagus.

We'll keep everyone updated on how Lucy is doing and if she is able to have the surgery.

Bumbo Baby

Lucy has just been sitting up by herself in her Bumbo seat longer now and is getting much stronger. Someone has to show these toys who's the boss!

Santa

To quote the expression on Lucy's face:

"WHO ARE YOU!?"

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.

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.

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.

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.

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!