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

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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.

Cobb County Schools Comes Through

Erin went for an IEP meeting with Cobb County Schools two weeks ago.  They went over Shannon's evaluation and they decided that she qualifies for speech therapy through the school district.

So Shannon will get picked up for daycare on Fridays, taken to therapy, and then brought back to daycare when they are finished.  All this and it is free!!!  Great news for us.  

So now she will go to Cobb therapy on Fridays and private therapy on Saturdays.

A positive sign of her speech development came in the way of ice cream.  Before Shannon couldn't move her tongue around the outside of her mouth.  She couldn't stick it out straight and when she did stick it out it would just go to the side.  They called it lazy tongue.  

We went to Chick-fil-A for ice cream the other night.  Shannon got it all over her lips and she stuck her tongue out and licked it all off in a circular motion.  A great sign that she is getting more control of her tongue and that her speech patterns will begin to take off.

Miss me?

I've totally been slacking on the blog.  I blame Facebook.  Updating my status was taking over for my blog.  I'm sorry.  I'll be better.

Things here are going well.  Shannon got into speech therapy and has been doing it for a few weeks now.  Only bad thing is that it is on a Saturday.  It is at a private therapy place.  On Thursday we find out if Shannon qualifies for aid through Cobb County School District.  Since Erin works for CCSD, our chances should be pretty good.

The family got a MacBook Air as a gift from my parents.  Totally unexpected.  We were expecting to get the used PC laptop that they got an Air of their own to replace.  This computer is so thin it is amazing.  Only complaint so far is that it only comes with an 80 gig hard drive.    

Not only did we upgrade to a MAC, but I also hooked up a wireless router for the house.  Combined with the MacBook it has already changed our lives.   Shannon spends much more time on the computer now and it is great to be able to be on the computer anywhere in the house.  We haven't had a single problem yet.