Cowgirl

Lucy will finally get the rest she deserves at the Heart Center. It's much more quiet and it means she's closer to going home. We can't wait!

Sweet Eyes

Lucy is awake in her new home at the Riley Heart Center.

Lucy Kate Update IX

We have been very busy for the past several days. Lucy is finally moved to the Riley Heart Center for her final week of recovery. Her chest tubes and IV lines were taken out and those wounds are healing. We have to change the dressings and wash her every day. This morning we finally gave her a bath and her hair is so fluffy now.

Accommodations in the Heart Center are much nicer than the ICU. Our private room has a couch that pulls out into a bed, several chairs, cabinets for storage and dim lighting. It's about the next best thing to being home. I'm writing this from the couch right now as Lucy sleeps. The worst part about living in the ICU was only one parent could sleep with Lucy at night. Now we can all finally sleep in the same room. It's a great feeling to be closer to her.

Lucy is starting to feel much better now. I couldn't imagine how sore her body is after having a surgical incision, three chest tubes, right arm IV, left foot IV, right thigh femoral arterial line, left thigh femoral vein central line, left arm picc line, pulmonary arterial line, right atrial line and pacer wires. If we could have traded places with her, we would have. We never want our baby to experience pain again.

She's still going through drug withdrawal, which is awful but it's slowly wearing off. She finally smiled for Sarah and I and showed her personality for the first time since surgery last night. After all she's been through, we finally have our little Lucy back.

Mama Time

After eleven long days, we were finally able to hold Lucy for the first time and give her the much needed love and affection from being held that she deserves.

Lucy Kate Update VIII

Lucy has been sleeping for the past two days. She was on a very high dosage of sedatives and it has taken a long time to wear off. When she is awake, it's only for a brief moment and she still doesn't quite recognize us or know what is going on yet. As the days go by, she becomes more alert and awake. It will continue to take time for the drugs to completely leave her system, but they have helped to keep her calm through the body's healing process.

We can now begin to hear her little moans and whimpers as her vocal cords continue to heal from the trauma of having a breathing tube. A little more time and she will let the nurses know exactly how she feels.

Lucy's three chest tubes will be taken out today and we will finally be able to hold her again. It's been 11 days now, but it feels like an eternity. Sarah and I are both so excited, we can hardly stand it. Her arterial line that measures constant blood pressure and remaining peripheral IV line will also be removed, because the risk of infection increases the longer those are in.

All of Lucy's tubes and wires are slowly coming out and within the next several days, we'll be moving out of ICU and into the heart center for her last final days of recovery before going home. We're almost there.

Lucy Kate Update VII

What a busy day. We are all exhausted. Lucy made a major step in her recovery and is now breathing all by herself. She failed her first study to see if she could come off the ventilator due to high Carbon dioxide levels in her blood. Eventually, she was ready and they pulled the breathing tube. She's currently on vapotherm, which is a humidified nasal cannula. It's providing oxygen through her nose, while she's in the transition of breathing on her own. She still has three chest tubes and an arterial line, so she will need to have those taken out before we can actually hold her.

Lucy is still on a very low dosage of sedative, Versed. She had also been under a heavy dosage of Fentanyl, so it's very likely she will begin to show withdraw symptoms and need to be put on Methadone.

We also received so many wonderful care packages today. We're very lucky to have such thoughtful and caring friends. I can't express how much it helps to make our stay here a little more enjoyable. I'll admit that hospital life is really difficult, especially after being away from home. But it's nothing even comparable to our first hospital stay when Lucy was first born, which was 75 days.

Currently, Lucy is still a little sedated and will continue to wake up more overnight as the medication begins to slowly wear off. She'll be uncomfortable at times, as she's still sore from her surgery. Overall, it was a great day and we're one step closer to going home.

Really Drowsy

Lucy's eyes opened for the first time, but she's still really sedated. She'll be fully awake soon and ready to play!

Lucy Kate Update VI

Lucy is continuing to make progress. Yesterday, the doctors put another chest tube in her right side to help drain the fluid near her lung, which helped dramatically. The large amount of fluid was restricting how much her right lung could expand to oxygenate her blood. Overnight, her respiration rate and oxygen level were reduced on the ventilator. This morning, her sedation drug dosage, Fentanyl, was reduced by half. Lucy is slowly beginning to become more awake and aware. Her sedation level is approaching a fine line, so it's awkward to see her try to cough and cry, but still can't.

The doctors will test her on CPAP (Continuous Positive Airway Pressure) today, to see how well she can breath on her own without removing the breathing tube. If everything goes well, she will be extubated later this afternoon and fully awake.

We are so excited that we'll soon be able to hold out little girl again.

Lucy Kate Update V

Yesterday, the doctors took Lucy completely off the paralyzation drug, Cisatracurium, and it was the first time she moved her arms and legs in a week. A very big step in the process and she handled it well overnight. It's been extremely difficult not to be able to hold her or give her much stimulation, but it's a great feeling to see her move again. I can't express how excited I was to see her little eyes open and feet wiggle. Finally, a glimmer of hope that she'll soon be awake. Today, the doctors will slowly decrease the dosage of sedation drugs. The trick is to finding the right balance between keeping her comfortably sedated, but not too alert for her to realize there's a ventilator tube down her throat. They have to ensure she'll be able to safely breath on her own before they stop the ventilator.

In several more days, we'll soon have our little Lucy back.

Powerpuff Girl

Lucy just received hand delivered comics from her online friends and Downtown Comics in Indianapolis. Thanks everyone!

Boy crazy

A big thank you to Lucy's boyfriend, Kyle, from the PICU for the balloons. We can't wait for her to open her eyes and see them. Such a thoughtful act from such a kind family. Prayers and hugs being sent their way. Please keep them in your thoughts as well as they continue to get their little one healed from surgery.

Dinomite!

Lucy is the coolest baby in the ICU.

Look at those sunglasses.
LOOK AT THEM!

Mama & Lu

Mama always makes sure Lucy gets enough smooches.

Lucy Kate Update IV

Lucy didn't have any major setbacks last night, but she started to have an increase in the amount of fluid from her chest tube drainage. Over the past week, the fluid has been more serous, which is transparent in color. Late last night, the fluid turned more pink in color, which contained blood. Eventually it was red. There was concern where the excess fluid was originating from. Several chest X-Rays later, the fluid near her right lung inside the pleural cavity had completely disappeared.

Today, the plan is to completely wean her off nitric oxide, decrease her oxygen levels and respiration rate on the ventilator and continue to aggressively move forward.

We're finally getting closer to extubating her and weaning the paralyzing and sedation drugs.

We can't wait for her to be awake again.

Lucy Mouse

"I better get to go to Disney World after all of this."

Lucy Kate Update III

Our Cardiac Intensivist has some very aggressive plans for Lucy after the past several days of not making any forward progression. Going to be a very rocky day, but we're putting our trust in his judgment to finally wean Lucy off a lot of drugs and nitric oxide. Hopefully today, we can make up for a lot of the time we've lost this week. I'll try to keep everyone updated throughout the day. Thanks again for your kind thoughts and warm wishes.

Lucy Kate Update II

Lucy's blood pressure and heart rate have been more stable overnight. The doctors are continuing to find a balance between nitric oxide, oxygen levels and new medication. Lucy is receiving Fentanyl for pain and also Versed for sedation. She had been wiggling and trying to breath on her own, which suggested she wasn't sedated enough and was actually 'awake' under her sedated state. The worst part as a father is not knowing if she is feeling pain, because she can't cry out. Overall, doing very well this morning. The doctors will make their rounds to discuss their plans for today. Hope to have good news of further plans to extubate her soon and get her out of sedation within the next several days.

Madeline Moussette

Lucy resting in Riley PICU and holding her rattle, Madeline.

Lucy Kate Update

I'm going to give everyone their medical lesson for the day.

Lucy's blood pressure and oxygen saturation levels were up and down last night. It's somewhat to be expected while the doctors slowly wean her off of nitric oxide, which is an inhaled gas that is helping relax the blood vessels in her lungs. Lucy has pulmonary hypertension, which is high blood pressure in the arteries that supply blood to the lungs, due to prematurity and Down Syndrome. Lucy is also currently on a ventilator, which is providing 90% oxygen and is breathing for her. Her lungs will slowly adjust as the dosage of nitric oxide is decreased and they slowly decrease the oxygen levels.

All very normal things, which will continue to take time as Lucy lets us know how to adjust her medications. Overall, she's still doing well and hopefully we'll get her out of the paralyzed and sedated state soon to see her sweet little eyes.

Stay Puft Marshmallow Lucy

Lucy has been terrorizing the ICU.

Since she is really puffy from all of the extra fluid in her body, her fingers look just like Marshmallow Puft's legs. So cute.

Lu & Mama

Lucy loves bouncing and giggling with Mama.

Bouncy Seat

Lucy catching a look at Daddy while playing in her bouncy seat. So precious.

Mr. Ray Charles, Ladies and Gentlemen

Lucy is too cool to give in to pulmonary pressure.

Wired Up

Lucy gave us a good scare during surgery. She had difficulty coming off of bypass due to the stiffness of her lungs and had to be placed back on again. After waiting a bit Lucy was able to come off of bypass and was placed on nitric through her ventilator. The actual repair for her VSD, double outlet right ventricle, mitral valve and extra superior vena cava went well from a technical stand point but the surgeon was unable to close her chest at this time. Hopefully in the next few days Lucy's swelling will go down and the surgeon will be able to safely close her chest and surgery will be complete. Lucy will slowly recover in ICU for at least the next week as her heart and lungs adjust to the changes and she stabilizes. She has lots of tubes and wires, but everything is important and slowly everything will be taken out as they aren't needed. We still have a long road ahead of us but are ready for the ride. A big thank you to everyone for your support and prayers. We feel like a very lucky family to be able to make this journey with so many people rooting for us. Love to all.

Sweet Dreams

Get your rest Lucy! Mommy and Daddy are looking over you every second. We'll be here to hold your hand when you wake up.

Finger Meats

I would recognize that sweet little hand anywhere.

Home Sweet Home

Lucy's temporary home at Riley Pediatrics Intensive Care Unit. She has a great team of nurses looking after her 24 hours a day.

I Heart You

Lucy's bathtime the night before surgery showing her chest without a scar.

She's ready for them to fix her pitter patter.

Lucy's Blessing

We had Lucy blessed by our wedding officiant, Marilyn York, at Garfield Park. It was really humid that day and Lucy was sweating like a little piggie.

Daddy's Little Lu-Lu

This is one of our favorite recent pictures of Lucy.

Green Ball

Lucy gets distracted from playing by sucking on her fingers.

Rings Gymnast

Lucy has a little difficulty getting a hold of her ring, but I think mostly she just likes to bat at it like a cat.

Kick Mat

Lucy loves to lay and kick at her cow, piggy and ducky.

Crib Cam

I put the video camera in Lucy's crib to make sure she wasn't sneaking out during her naps and caught her gobbling on her fingers.

Rolly Poly

Lucy rolling over for the first time.

Baby Rattle

Lucy play with her baby rattle

Daddy Smooches

Daddy always gives me lots of smooches.

Really Drowsy

Lucy is most concerned with getting more nite-nites.

Little Drowsy

Lucy is ready for her cardiac catheterization.

Cardiac Catheterization

Lucy has a cardiac catheterization today, which is a procedure to examine blood flow to her heart and test how well the heart is pumping. This is the only diagnostic test she will have before her heart surgery next week. She’ll be under general anesthesia while a thin plastic tube is inserted into an artery in her leg and from there it will be advanced into the chambers of her heart to study the injection of dye through an X-Ray.

If everything goes well and they don’t discover any new developments with her heart, we’ll be prepared to have her heart surgery on August 17th.

Again, we appreciate your continued thoughts and support.