Day 4

9:00am: Lili had a chest X Ray this morning. Everything looks great. The Nurse Practitioner was just in here. She said Lili looks great and she will be discharged this morning.

10:30am: Mike and Erin went on Star 94 and told Lili's story. They also donated $100 to the hospital's fundraising drive.

11:00am: The last IV is removed and we are giving the discharge papers.

11:20am: Lili is officially discharged and is heading home!

12:28pm: Lili is home. She is sitting up and playing with her toys.

9:15pm: Lili had a great night. She had a nice nap, a bath, and starting eating Rice Cereal and fruits again. She is now down for the night.

Day 3

9:00am: Last night they took some blood, some X Rays, checked up on Lili again. Today she will get her chest tube out, another X Ray, and an Echocardiogram. Lili is of normal personality. Lots of smiles.

9:35am: Lili was given some Morphine to prep the chest tube removal.

10:00am: Chest tube is out! First look at incision without the gauze on it.

10:11am: Lili is getting an Echocardiogram.

11:20am: Echo is finished. Cardiologist says everything looks great.

12:30pm: Lili was taken for a chest X Ray.

1:56pm: Lili sits up for the first time post op. She will be going home on Friday!

2:30pm: Erin holds Lili for the first time post op. Lili has been very active and has been blowing raspberries at us.

2:45pm: Mike and Grandma Mimi pry Lili away from Mommy long enough to hold her themselves.

5:24pm: Erin and I will be on Star 94 in Atlanta Friday morning at 10:30am to tell Lili's story. They are having a radiothon to raise money for Children's Healthcare of Atlanta.

8:30pm: They took the IV out of Lili's arm. Her left hand is now all unwrapped. It was like a new toy for her. She was amazed by seeing her hand again.

Day 2

9:00am: Lili had 3 ounces of formula this morning and will be getting moved out of CICU and into a step down room this morning!

10:15am: Lili has been moved to the Step Down Unit! She was awake and very cheerful!

11:25am: Just talked to the Nurse Practioner and she said that Lili's chest tube will come out tomorrow and if all goes well she will be discharged on Friday!

1:00pm: Erin and I take a CPR class. We also had to take a discharge class.

2:20pm: Lili wakes up and drinks 4 ounces of formula from Mommy! She was up for about 30 minutes. Played with a stuffed animal then fell asleep again.

3:30pm: Shannon arrived with Grammy and Grandpa. As soon as Lili heard her voice she woke up from a nap with a big smile for her.

5:00pm: Lili drank 4 more ounces of formula. She has been kicking her legs, clapping her hands, and making noises with her mouth.

10:00pm: Lili was awake for about an hour. They changed her blood pressure medication to one that is not as potent. The old one was bringing her pressure down too much.

Surgery Day

6:00am: Lili, Erin, and Erin's mom arrive at the hospital.

6:30am: Lili is given a drink that will make her sleepy. She will then be given a breathing mask that will put her to sleep.

7:24am: Lili is taken back for surgery. Actual procedure will take place around 9am.

10:11am: Just got a call from the OR. Lili is now on the heart and lung bypass and the repairs are being made. Everything going as expected.

11:22am: They are closing up now. Everything still as expected. Surgeon coming out to talk to us soon.

11:40am: Just talked to the Surgeon. He said everything went well. Her heart rate is fine. No pacemaker needed. She will still be on a ventilator till later today. We can see her in an hour.

2:00pm: Lili is now in the CICU. Just saw her for the first time post op. She is still asleep and looks very peaceful.

3:00pm: Erin and I met with a social worker to go over the next few days. Lili is breathing well on her own. She is almost breathing as much as the vent is.

5:25pm: Not much to update. Lili has turned on her side a few times. She is still being sedated and given meds to address any pain. Erin and her mom will be sleeping at the hospital tonight.

7:45pm: Lili's breathing tube is out! She is now sleeping with just a nasal cannula. Blood pressure is a little high, but that is normal after surgery. They are giving her meds for it. She may be out of the CICU tomorrow!

10:00pm: Lili now has the NG tube and nose cannula out.

Pre Op Day

We arrived at Children's Healthcare of Atlanta Egleston at 9:45 this morning for Pre Op.

11:05am: We are in an exam room. Lili has met with her Anesthesiologist and her Surgeon so far. We are waiting for the next department to check in. Today she will get an Echocardiogram, blood tests, and X Rays. Today's visit should take about 5 hours.

We found out that the surgery will be at 7am on Tuesday. Erin and her mother will be at the hospital at 6am. I'll be dropping Shannon off at school and then head to the hospital.

12:37pm: We have moved out of the exam room and are now at the Echocardiogram area.

1:23pm: Echo comes back as expected. Next we wait for blood tests.

2:10pm: Lili has blood drawn after taking a half hour nap. She cried for the first time but recovered quickly.

2:30pm: X Rays taken. We are back in the original exam room waiting to be discharged for the day.

4:10pm: Finally discharged for the day!

TOF Videos

Here is a You Tube video of a child that went through the same surgery that Lili is going to have.

Gives you an idea of what she will look like in the hospital. Might be hard for some to watch, but very informative.

The video is made up of still pictures.

http://www.youtube.com/watch?v=jR3VjQVtObs

---------

This video is more from the medical side of things. It has a great animation of what they are actually going to do.

http://www.youtube.com/watch?v=Sl6RoaLyIgw&feature=related

Lili Surgery Date

After a few months of visits to the Cardiologist, we finally have a surgery date for Lili. Lili was diagonsed with Tetrology of Fallot with absent pulmonary value while still in the womb. She needs an operation now to patch a hole in her heart. Once her heart is adult size, she will have a value replacement operation.

She will be operated on Tuesday November 16th. We have to go to the hospital on Monday the 15th for pre surgery. The operation (to patch the hole in her heart) will take 5 hours. After the surgery she will spend two nights in the CICU. While in the CICU she will have a breathing tube, chest tube, and an external pacemaker.

After the CICU, she will be transfered to a step down room.

Lili will be in the hospital for 6 to 7 days.

I'll be using this blog to update everyone on our experience. There will be pictures that might be disturbing to some people. Our goal is to document everything we are going thru and see from here on out. If even one family with a simliar situation can learn from our experience then it will all be worth it.

We can't thank everyone enough for the support you have given us already. It really means a lot to us.