After your surgery was cancelled on Tuesday we knew that we had to wait for at least a few more days until we would get another verdict on whether or not your needed to have another surgery set up for the following week. Wednesday rolled around with no new promising statistics. On Thursday we knew that taking an extra long EKG was one of our only shots at revealing where your long QT was at. I stood by your bedside trying to get you to go into a deep sleep so we could see if you would slip back into your complete heart block phase. Your dad stood by the portable computer watching every beat of your heart pass quickly on the screen. We kept looking at each other. Nothing was changing, we weren’t getting the information we needed, and I felt like I was going to break down. “C’mon God, we need this. We really need this.” Then you started to stir in your sleep and it happened. We got you in your heart block. The technician hit the print button and we watched as we got the most data we had ever received from an EKG since you were born. Pages of results for the doctors to critically look at and calculate all in order to decide if you could come home.
Friday rolled around and it was looking promising, but we had no idea what would happen next. Your Dad & I both got CPR certified and then we waited anxiously to hear the decision. It was in the afternoon that our doctor came in with a huge smile on his face. Jackson’s QT length was in the normal measurement that it needed to be in and they were ok with us taking him home. No surgeries, no monitoring, no medication, no cords, just a baby boy.
Since then we have been staying up in Houston waiting for our follow up appointment tomorrow to see how things are going. There is a large chance that Jackson will need a pacemaker at some point this year as well as other surgeries in the future. However, we dodged one surgery already and we truly believe that God is doing amazing things through the incredible life of Jackson. We are committed to taking it one step at a time, one day at a time, and praying continuously for a lifetime of miracles.
For now we anxiously await tomorrow’s results but have to remember to enjoy each day with him. The high intensity of living with a child with medical issues is very scary and stressful, but the moments when you can escape the worries you experience such deep joy. Last Friday when I held him in my arms for the first time with no cords and monitors it was like an out of body experience. It was a moment I had prayed for and it was perfect in every way. I was once again reminded of how faithful God is to give me all those moments that I have truly wanted so deeply in my heart. He knows all the desires of my heart and as we hit each of those moments it’s like God allows for time to just stand still for a few minutes for me so that I can just bask in the complete joy of the milestone. It’s unlike anything I have ever experienced before.
If everything goes ok on Thursday we will be heading back to our home on Friday. It’s been just about two months since I have been home and I anxiously wait to carry that little boy through those doors. Only a few more days and it could be a very real possibility. For now we take one day at a time and at times one minute at a time. I am blessed in every way because each day I wake up to see God’s grace in my life in the physical form of a perfect and special baby boy
Ava holding Jackson all by herself!
Holding Jackson for the 1st time with no wires attached!
Getting ready to head home!
A long time in coming... 2 carseats in the back of our car!