First Play Date

Friday, September 19, 2008

My great friend Amber and her son, Drake, drove over from Georgia for the afternoon. We had such an awesome time. The boys did not get as much out of it as we did. Drake is 6 days younger than Jack. Yes, Jack is huge compared to him. Drake has the prettiest blue eyes and the perfect little head. I tried to get Drake to show Jack how to push up on his arms to roll over, but Jack did not pay him any attention. Maybe one day my son will lift his head while lying on his tummy, instead of licking his arms. Jack tried to show Drake how to bat at objects hanging from the play gym, but I think Drake was too overwhelmed by Mr. Star...

We had a great time just hanging out and talking. We went to SOHO for lunch and met some of our college friends. It was a great afternoon!! Thank you Amber and Drake for coming over to see us!!!

Sad face...

Thursday, September 18, 2008

I have been trying to get a picture of Jack poking his bottom lip out. I finally got some. I was making raspberries at him and I don’t know if he was trying to copy me or it was making him upset. But I finally got the picture I have been trying to get for a quite some time.

Check-up at the Cardiologist and Pediatrician

Wednesday, September 17, 2008

We had our check-up with Dr. Pearce, the cardiologist at UAB. They checked Jack’s oxygen levels, which was 94%. They performed another 2-D echo/Doppler study (looked at his heart) and noticed no signs of congestive heart failure. All his valve measurements were good and where they should be. As Dr. Pearce said, we are in a holding pattern. He did say that he was very pleased at how stable Jack is. As the doctors like to say, Jack has a “relatively balanced circulation” at this time. I just love their wording... Dr. Pearce seems to think if Jack continues to progress like he has been, then he should be able to wait until spring/summer before having to have surgery. He did say deterioration can happen at any point.

As Brian and I where sitting in the waiting room of the cardiologist office waiting on our results from the genetic testing, I watched all these families come and go with there little ones (and some big ones). I find myself sitting and wondering what each child has...are they going to make it...is it worse than Jack’s...is it at all like Jack’s. It is a strange feeling being on this side of things. Working as a pediatric physical therapist I see child with special needs and I want to fix them. I want to do whatever I can to make the child and their family better. But these kiddos in the waiting room, including my son, I can not fix... It is quite a hard concept for me!! Because, like Jack, these kids do not look or act “sick” but inside their small little chest lies a serious problem.

The genetic results showed that Jack does not have any chromosomal abnormalities. This was a true answer to prayer!! We are so thankful that everything else seems to be in order.

We have scheduled our trip to Boston to meet Dr. Breitbart and Dr. Mayer for October 13th. Jack will have a sedated ECG and other test. Brian and I feel so lucky because my uncle has a meeting in Boston and the three of us are going with him and my aunt on his company jet. We will not have to bother with germs from commercial airlines. This also means my aunt will be able to go to the meeting with us, which I am very excited about. It will be nice to have someone else there to hear the information and to have an option. I told my aunt that I can not believe that Jack will ride his first private jet at 3 months...I did not do this until I was 29. It has started...my child gets to do things way before I ever even dreamed of doing things.

The pediatrician's visit went great!! It was very “normal” since we had just seen the cardiologist, Jack did not need his oxygen taken or anything heart related done. He weighted in at 14 pounds 8 ounces and is 25 inches long, both of which puts him into the 95%. His head circumference is 16, which puts him into the 75%. Dr. Denton is very pleased at his growth. We where told that this is great “considering his condition.” I just love those words =(. Jack got his first shots. He was not happy about them at all. I think he turned 4 different shades of red. I debated long and hard about the shots. I talked with several friends, one who has a couple of sons with special needs. I don’t think there is a right or wrong way to do the shots. I do think they are important, but does a little baby need so many at once? It is so tough!! Thank you so much to my friends who put up with me asking them tons of questions. I must say, at least they used cute band-aids!!

Monday, September 1, 2008

For Labor day this year, Brian and I decided to pack up the car and make the 8 hour trip to Sullivan’s Island, an island right outside of Charleston, SC. My aunt and uncle have a beach house there. I never new adding one little boy would require the addition of so much stuff for a trip. We almost had to trade in my pilot for a bigger SUV just for the extra stuff. We brought so much...well, we could not travel with out Mr. Star and the play gym, the rainforest bouncer seat, and tons of Jack’s favorite toys. Yes, we were only going for 3 days...but I did not want my kid getting bored. :) The drive over was not so bad. I sat in the back with Jack and played with him when he was awake to keep him on his normal schedule so he would still sleep that night. We only had to stop to feed him twice. I was very impressed with how well he did in the car. I even brought the breast pump and pumped while we drove. Thank goodness for tinted windows!!!

The beach was wonderful!! My aunt and uncle where there. My aunt’s two sisters. My dad and Nena. And my sister and Todd. I don’t think Brian and I even got to hold Jack except for putting him down for naps and bedtime. It was so relaxing for us and refreshing. The best part was that Jack started sleeping 11 hours...yes you read that right...11 hours. I am officially in heaven!! He now goes to bed at 7:30 and gets up at 6:30.

I had a lot of fun spending time with family and drinking wonderful wines!!! It has been a long time since I have gotten to taste my uncle’s wines and it was very tasty.

My uncle got his boat ready and dad, Ashley, Todd, Uncle Ed, Brian and I went out on the ocean while Jack stated home with my aunt and her sisters and Nena. It was so much fun to float away for a couple of hours. We drove to a small island away from Sullivan’s Island and Todd got some great pictures of a lighthouse and of the beach house from the ocean.

The biggest part of the trip was Jack’s first time in the pool. He loved it. He loves his baths, so since Aunt Suzan’s pool is heated I knew he would love it, too. I think Brian had just as much fun as he did!! Jack is a born swimmer!!!

Overall our trip was wonderful!!! I think for our first time driving with Jack and being away it was amazing. We can’t wait to go back. Sullivan’s Island is so relaxing and to just sit on the porch and rock while staring out at the ocean is just an amazing thing!! It truly is the most wonderful place on earth!!

2 Months and Our Anniversary

Wednesday, August 27, 2008

Jack is 2 months old today!!! And it is our 4 year anniversary. WOW!! Two big milestones in my book. I feel very lucky to have this thriving, happy baby boy and an amazing husband. I could not ask for anything more. I am married to my best friend...someone who does so much for Jack and me. Sometimes I feel like I expect too much from him or have him do too much, but he always comes through. I could never truly put into words how much my family means to me, especially my husband. I could not make it through each day without him.

Good News

Friday, August 15, 2008

Dr. Briebart called Brian on Friday to let him know that he had received the video footage that was taken at our last cardiologist appointment at UAB. He said after reviewing the tape that he is not ruling out the double switch procedure. Dr. Pearce had said that Jack’s right ventricle (on the left side) was not big enough to act as a pumping chamber so the only procedure available was the Glenn-Fontane. Well, Dr. Briebart said that the ventricle might be large enough to act alone. He said he would know for sure after more test where run on Jack. He also told Brian that we could come up to Children’s Boston to meet him and Dr. Mayer before we schedule surgery. This made me very happy. In my head I want a round table discussion about Jack by the doctors in Boston way before we have to have surgery. We are heading back to the cardiologist on the 29th... Keep praying for Jack’s little heart.

Continuing to Grow

Thursday, August 7, 2008

Jack had a weight and oxygen check at the pediatrician's office today. His oxygen was 89-90% and he weighted 11 lb. 12 oz. Dr. Denton was very pleased at his weight gain and his oxygen level. We are still in a waiting period. She told me to keep doing what I am doing. Jack continues to amaze me. How can this little kiddo just keep maintaining his body with such a messed up little heart? I continue to pray everyday for his heart. I pray for healing of his heart!!! I pray that he can get through his major gross motor milestones before he has to have surgery. I don’t want him to get delayed because of heart surgery.

After the pediatrician visit, I had to go for my 6 week check up at Henderson and Walton. One of my best friends was in town from Nashville and came with me to watch Jack while I was with Dr. Lassiter. It was a hard visit because none of my doctors knew about Jack’s condition, so I had to tell them all about it. When I was telling Dr. Lassiter, she got upset. She was stunned!! How can I deliver a baby just feet away from the doctor’s office and them not know what happened? I am just starting to look a Jack and not think about his heart. I don’t need my doctor to get upset. I can finally talk about it without tearing up myself. Dr. Lassiter continued to tell me how blessed Jack was to have me because I at least have some knowledge and can help him. I am very thankful for that, but sometimes I don’t want to keep hearing it. Why can’t I just be knowledgeable with a completely healthy little boy? On a positive note...I weigh ten pounds less then I did before I even got pregnant. YEA!!!

I look at Jack and he is so big...I can not believe he is 6 weeks old. He is an awesome little boy. He is sleeping 8 hours in his first stretch at night. Now, if Brian and I could just go to bed instead of staying up we would actually get some sleep too. Everybody told me I would ask myself what we did before we had Jack...and it is true. I have no idea!!