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

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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.

Happy Anniversary

Happy 6th Wedding Anniversary to Erin and I.

6th year married.
15th year as a couple.

Gas

Strange days in Atlanta. Almost like jumping in a time machine and experiencing what it was live during the gas shortage of the mid 70s. There is no gas in Atlanta right now.

Not only downtown, but the surrounding metro area as well. Hurricane Ike cut off our supply. Because of the air pollution in Atlanta, we have to have a special mix of gas. Once those refineries lost power, we lost our supply.

The Governor of Georgia got the special gas put on hold so we can have any gas we can get. The problem is he took too long to do it and everyone is panic buying. If there is a station with gas, you better be ready to wait for it.

On Friday I was lucky enough to fill up both cars. We had been down to a 1/4 tank in each one. I filled Erin's car and only had to wait 10 minutes. Later in the day I had to wait 30 minutes to fill my car. I can't imagine waiting in line that long and then not getting gas. I got lucky.

On the news there are stories of fights breaking out, people getting shot, and police officers having to be called in to manage the lines.

We are told that the "crisis" could be over by this week or by next week. Who knows? Most stations have only one grade of gas for a few hours and then the numbers come back down off the sign again.

Speech Evaluation

Erin took Shannon to her Speech Evaluation on Wednesday. Here is how she summarized the session:

It went surprisingly well, in that Shannon participated more than I thought she would. The speech therapist ran a few tests and Shannon is showing some articulation (pronunciation) problems which makes it hard to understand what she's saying. She also has a weak tongue, so we have some exercises we have to do with her. She will need some speech therapy, but her delays are mild and should improve fairly quickly. We won't get the final report with scores and everything for about 2-3 weeks.

Now the problem is finding a speech therapy slot for her. We need to have an after school spot since Mike and I are both working. Every place around here has at least a 2-3 month waiting list. So, I'm trying to see if Shannon will qualify for services through the school system. The school will provide transportation to and from daycare (I'm still checking on that), and, best of all, it's FREE. Oh, did I mention that our insurance doesn't cover speech therapy for articulation disorder? Just another obstacle. So, I'm really hoping she'll qualify for school-based.

Speech Therapy

It looks like Shannon is gonna need to have some speech therapy in the near future. Erin had her friend over to give Shannon an "unofficial" speech evaluation and she scored below average.

This Friday we go to the pediatrician for Shannon's yearly check up and a hearing test. Once she passes the hearing test (while we think so will) then she is going to Children's Health care of Atlanta for her official evaluation.

Basically Shannon should be talking better than she does now. Using 3 word statements and verbs. Right now she is a mix of one word statements and baby talk. She does talk well at times, but overall she should be doing much better.

She was technically born a month early so that might have something to do with her development. We shall find out next week.

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On a brighter note, Shannon went to her orthopedic doctor for a yearly check up on her feet and everything looks great. We don't have to come back for another check up for 2 years.

Happy Birthday Erin

Happy 32nd birthday to the mother of my child!!!

To celebrate Erin decided to go to the dentist and have a cavity filled. Now that is a birthday present.

Guitar Hero III

After much back and forth I finally decided to buy Guitar Hero III last week. I wasn't really interested in spending 90 bucks on the game, but when I discovered that Best Buy was selling it for 60 bucks I was all over it.

I can't believe I waited this long to get it. After the first day I was hooked. I've played it before and had a good time, but wasn't sure I could maintain enough interest to own it. I'm playing about 2 hours a night now. Erin has to yell at me put the guitar down.

I'm working my way through the Easy level right now and have started to hit songs with multiple chord progressions.

Shannon loves watching it. After each song she either says "more" or "again" to get me to play on. I'm more than happy to satisfy her request.

What an additive game and a fun way to connect with music.

Hospital Visit

I spent most of my Tuesday morning in the Emergency Room.

At about 5:30am my left arm went numb. I thought maybe it had fallen asleep and that it would just go away. I started doing shows and at 7am the numb feeling didn't go away. So I decided to leave and go to the ER.

I was put on a heart monitor, had X Rays taken of my chest, and I was given a CT scan. Everything came back normal. The doctor believes that the numbness in my arm is from a pinched nerve in my neck.

I have also been having pain around the incision from my hernia surgery. When I would bend over and straighten back up I felt stretching or tearing going on. I went back to the doctor who did the hernia surgery. She said that everything was normal and that it could be a nerve inflammation or groin pull. She gave me a steroid shot for the pain.

The CT at the ER confirmed that everything is fine.

Today my arm isn't as numb, but my fingers are still numb. I was given a muscle relaxer to help with that.

Back Home

We made it back home on Friday morning. We left on Thursday afternoon and did the 15 hour drive back. After much debate we decided that after 3 weeks away we just wanted to get home and passed on staying at a hotel. So Erin and I split up the driving and we made it home at 1:30am.

Shannon was great in the car. Her only complaints were when she had to go to the bathroom. Once again she stayed glued to the portable DVD player. Her favorite selections were Maisy and a DVD that has episodes of Barney, Thomas, and other Hit Entertainment shows.

It was a fun filled 3 week and we got a lot done.

We did:

~Duquesne Incline
~Pittsburgh Children's Museum
~Primanti Brothers
~Pirates/Yankees Game in Pittsburgh
~Blue Jays/Yankees Game in Toronto
~Saw my brother graduate high school
~Saw a college friend I hadn't seen in 10 years
~Had a big birthday party for Shannon
~Spent a day on the North Fork Wine Trail with friends and family
~Saw a friend of mine that I haven't seen in 15 years
~Yankees/Rays game in New York

Shannon's birthday went off without a hitch. Only two no shows and everyone seemed to have a good time. It was hard to talk to everyone that I wanted to cause I was running after Shannon with a video camera.

Got to go to the old Yankee Stadium one more time before they move next door. we went to Monument Park which I have never been to before. The wait really sucked. We got there just as the stadium opened and we still waited a long time to get in. We were all lined up on the ramps to the upper sections which were extremely hot.

We had a great time but it was great to sleep in my own bed again.

Happy Birthday Shannon

Today is Shannon's 3rd birthday.

We are on Long Island to celebrate. A family BBQ today and then the big kids party on Saturday at Wood Kingdom. Both should be a good time.

Erin just gave her a Dora birthday mylar balloon and her face lit up. She hasn't let go of it yet. Ina few hours I have to pick up the Disney Princess birthday cake from Walbaums.

Pittsburgh and Toronto

I'm in Buffalo right now.

On Tuesday and Wednesday we were in Pittsburgh. Took us about 11 hours to get there. We went on the Duquesne Incline, went to the Children's Museum, had lunch with Jerylin at Permanti Brothers, and took in the Yankees/Pirates game.

PNC is a beautiful park. It is small and wide open. Seeing the Roberto Clemente Bridge and the city landscape over the outfield walls was awesome. Definitely one of the best parks I've been to so far.

Got to PNC Park early to watch batting practice. While we were watching I got a position right up against the wall. So I held Shannon and we watched the game. We were all decked out in our Yankee gear. We noticed a Yankee walking over to the wall. He pointed at Shannon and handed her a baseball. She was so excited. She held the ball the whole game and when we got back to the hotel she slept with it.

Yankees won 10-0 and Joba got his first win as a starter.

3.5 hours of more driving got us to Buffalo. We have been spending time with my family and on Friday we went up to Toronto to see the Braves and Blue Jays play.

Rogers Centere formerly Sky Dome was ok. PNC really spoiled us. Totally different feel with the retractable roof and hotel as part of the stadium. Compared to PNC which is wide open.

It took us 3.5 hours to get to Toronto. We fought through the rush hour traffic and made it 15 minutes before they opened the park. Erin, Shannon, and I were decked out in our Braves wear. As we got in, we went right down to the third base line and into left field to watch batting practice.

Charlie Morton who is a relief pitcher for the Braves walked right over to us and handed Shannon a ball. Two baseball games and two baseballs for Shannon. Very cool stuff.

Rogers Centere also had a great kids area for Shannon to play in. Erin and I would take turns watching her while the other went and watched the game.

The Braves won 4-0.

On The Road Again

Our 3 week vacation starts on Tuesday.

First stop is Pittsburgh. We have tickets to see the Yankees vs. Pirates on Wednesday at PNC Park.

We are spending 2 nights in Pittsburgh and then we drive up to Buffalo. My brother Casey is graduating high school so the family is all getting together for the big event. While I'm in Buffalo, Erin, Shannon, and I are going up to Toronto to see the Braves vs. Blue Jays at Rogers Stadium (formerly Sky Dome).

We stay in Buffalo till July 1st and then head to Long Island. On the way we are stopping in Scotia, new York to visit with Renny Tallman and her family. Renny was a really good friend of mine at Ithaca and I'm excited to meet up with her. Haven't seen her in 10 years. She has a son that is Shannon's age and younger daughter.

Her son was actually due the same day that Shannon was due to be born. Shannon went a month early, Jimmy went late. So neither hit on their due date.

On Long Island we are going to have a kids birthday party for Shannon, hit the North Fork Wine Trail, and go to a Yankees game with the Kenneys. This will be the last Yankee game I will see in the old stadium.

We are due back in Atlanta on July 11th.

Lots of driving, but a lot of fun planned. I will try my best to update the blog as we go so keep checking in.