New Look

Yes you are on the right blog!

I thought it was time for a new look. I wanted something that was more fun and upbeat. I also needed to change it because the brown background would not show up on ipods or iphones so our blog was not able to be viewed.

I really want to design a blog from scratch but that will have to wait until I have a little more time on my hands. For now I just customized a template from cutest blog on the block. Great site by the way if you have been thinking of designing a blog of your own.

Happy 4th of July to everyone.

Our holiday weekend has been great so far. Last night we did fireworks at the hosue. Aidan liked the fireworks much better this year although he watched the "Loud" ones through the window because he did not like the noise. Jacob slept through all of the festivities. I stayed in the house with Jake and got some work done, while taking a moment here and there to join in on the fireworks. It was very low key this year which was very nice. Andy had a great time with Aidan. Fun was had by all!

Tomorrow we are going to my parents to have a cook-out. I can't tell you how nice it has been just hanging out around the house with my boys (Andy included).

Jacob went to the pediatrician to be weighed on Friday and he was just shy of 12 pounds! He is not getting the calories that a normal baby would be and we are going to work on that but the good news is he is still gaining what a normal baby would. We don't want to push him so we have to take it slow. He is still gaining a half a pound a week. Can't imagine how big he will be when we get him up to the right calorie amount.

I am anxious to talk to the cardiologist and get another echo to make sure his heart function has not decreased at all. His heart rate has been lower at night. I think it is because he is older but still any change makes you nervous with these kiddos.

I have some prayer requests for a few of my dear friends that we have met through our Journey.

Emma has lived at chop all but a few weeks of her life. She will be a year old next month. She has hypoplastic left heart syndrome like Jake and is currently awaiting a heart transplant. The last few days her body has taken a turn for the worst. They are having to keep her sedated and intubated in hopes that it will help her body rest and she will start feeling better. Please pray for Emma and pray for the family who will have to lose their child in order for Emma to get her new heart. Also pray for Emma's mother Christina. She has two other children at home and is constantly going back and forth between them. Pray for her strength to get through this new hurdle.

Baby Emma

Please also pray for my friend Stacey. Her family is going through a lot right now. Baby Zoe was born at CHOP a week before we left. I met Stacey on facebook before we met in person at CHOP. Zoe's latest echo showed mild decreased function in her heart. Pray that her heart stays strong and does not decrease in its function anymore. Jake's heart did the same thing around the same time. His heart squeeze is on the lower side of normal so they have him on captopril to help. They are trying Digoxin on Zoe first (Jake was on this at one point also). If that doesn't improve the function then they will do Captopril with Zoe however she will have to go to the hospital when they start it so they can monitor her blood pressure. We are praying she won't have to go to the hospital so pray the Digoxin works. Also please pray for Strength for her husband Caleb. His mother is ill and he is dealing with a lot of stress right now.

And please keep my sweet Jacob in your prayers. In a few weeks we will be headed back to Philadelphia and I will have to hand him over to have yet another operation on his heart. It will be so much harder this time since I am with him 24 hours a day. It will be very hard watching him go through this again but I also know that he will get stronger with each surgery. I worry about strokes, bypass, getting of the vent... the list goes on.

I also scheduled a visit with a pulmentologist while we are there to check his lungs and see what is going on. I worry so much about the lungs. It will be good to have a diagnosis but I am also scared of what they will find. I pray the cardiologists are right and that it will get better with age.

As always I pray for all of the precious babies who have lost their battle with CHDs and who are still fighting daily. You inspire us all to be better people.

Love,
The Bakers