Happy Easter to everyone!!!
I am sorry we have not updated for a few days. We have been so tired. We did not realize how much energy has been taken from us. The anticipation of everything kept us going and then once we saw that Jaden made it through surgery and was pretty stable, it hit us hard. We have been sooooo tired and so have the kids.
Friday through the night, I checked on Jaden a few times and he was doing well. He has had a few more blood transfusions. A few reasons for that is one, they take so much blood for lab and his body is so weak, he is not able to replenish it. The 2nd, is to help keep his blood pressure stable. That has been one of the hardest things to keep stable. Otherwise, he did not retain to much fluid. They say it is normal to go into surgery weighing 7lbs and coming out weighing 10 or 11lbs. I am not sure where he is at but he did not gain much. This is very good. It means he is peeing out all the fluids that are going in and his body is doing the work that needs to be done.
Saturday was another good day. He was stable all day and Steve his nurse said he was trying to think of what to write in his report because he did so good. YEAH!!! There is a group of us with babies that are having some major issues and surgeries. Probably 6 of us. We all talk with each other and listen and learn. Jaden has been doing the best and every time one of them asks or we talk about it, I get to say it is because the power of prayer. I get to tell them that we have people all over the United States praying. It is so cool. I know that is what has kept us so strong. Without it, I am not sure where we would be. It has been miraculous to see his open chest. They have a big clear yellow tape over his entire chest and then the incision which is a oval right now. Where to opening is, there is a little piece of canvas which is stitched to his skin to ensure nothing sticks to the heart. The reason they have to leave his chest open is because the heart is to swollen and inflamed and it is to big to close the chest. You can see the heart beat really strong against the canvas. The only thing between my finger and his heart is this very thin piece of canvas.. It is so unbelievable!! Only God could give someone the brain to come up with this survival technique while the heart gets to its normal size.
Today the RMH left an Easter basket at our door and then when we got to Jaden's room, he had an Easter basket as well. We did not do too much. We were so tired that we rested quite a bit and just spent time together. Ashley and I went alone once today to see Jaden and we read to him by his bed. It was really nice. I told Ashley we would read 1 story and we read 3. She told Steve that she tricked me to read 3. It was very special.
Sal and the kids will leave tomorrow night to go back to St. Cloud. This will be really hard. The kids are excited to be back but they don't want to leave me and they want to stay with their baby brother. It will be hard for us all to adjust to this next step in our journey. Those of you who wanted to help that live in the St. Cloud area, this is the time we will ask. Sal and the kids will need meals. I want to make sure they are not eating McDonald's all the time. So anything that can be frozen and easy to through in the oven would be great. Fruits and veggies would be nice as well. And a quick word of advice, don't ask Sal if he needs meals because he will say no.
that's it for now. I will let you know how tomorrow goes. The word is that they will be closing his chest tomorrow. This is a surgery that is not as intense but still is major. After they close him, a lot could happen and go wrong. So please keep those prayers coming. We are past the 1st surgery, but no where near home plate.
Love to you all on this Easter Sunday, Steph, Sal and the kids