I really was on the fence about posting about this but now that we are through it and I use this blog just as much as a "memory book" as a way to keep all our lovely family and friends informed about our life I decided it was very important. So...this might be a very long, confusing ramble but also an amazing journey and important part of our lives. So much to recall, I know I'll miss some but I know it is all part of God's plan and I thank Him for always taking care of us.
It all started when we went for Sawyers 9 month check-up with the pediatrician, he heard a heart murmur. He said it could be nothing but he said Sawyer definitely needs to get an ultra-sound to look into it. We found out that he had a hole in his heart between the two upper chambers...called atrial septal defect. Very scary but they said this wouldn't need to be fixed until he was at least 3 years old and it wasn't affecting him at all. Well, as time went on and they monitored the condition they found out that he was also having very high pressure in his arteries and were concerned he may have pulmonary hypertension which is a condition that is chronic and would require medication for the rest of his life. They wanted to do a "heart cath" to determine what was causing the pressure...the hole and high blood flow or another condition in addition to the ASD.
Below are pictures of when we went in for the heart cath. Even though this isn't actually considered surgery we were very scared. So much emotion and worry, can't put into words. We actually went in the first time (which was in January) and got sent home because right before they were about to put him under anesthesia because he had a fever and they didn't want to risk him being sick (which by that evening) he was. So we rescheduled it and rescheduled it a number of times because he kept getting sick and it would linger and they wanted to make sure it was completely out of his system, otherwise they wouldn't get accurate results. So we got through it and GOOD NEWS, he didn't have pulmonary hypertension but he did have very high blood flow and they were worried if we didn't correct the ASD soon it could cause pulmonary hypertension. I just wanted to run away to a deserted island without doctors (he looked more that perfect from the outside...maybe we could just ignore this and live happily ever after???)
So amazing that he went through this but he (we) still had so much in front of us. He had open heart surgery on June 11th. It already seems so much like a dream...only because it went as perfectly as possible. So much worry, could have gone differently. These doctors and nurses and everyone involved were so amazing.
We got to the hospital so early in the morning and they had alot of preparations of course. I just held him, played, knew I'd eventually have to let him go. It was SO hard. They gave us so many updates throughout the surgery and it was they biggest relief when they told us he was off the heart/lung machine and they were sewing him up. He is such a strong boy. We didn't know what to expect, what to do...luckily our job was only to give him love, everybody else took care of everything else. So many tubes and medications. But such a blessing that it is over...he never had to have anxiety over this and he doesn't really remember. But he does know how to check everyones heart and knows where his owie is on his heart.
Bathtime the night before surgery.
Right before they took him into surgery room.
So much to process when we saw him afterward, felt scared and helpless.
Hes awake and resting with his blankie and Mister Owl. He was such a good boy, had to stay in bed for so long...not normal for this guy.
Getting moved from Intensive Care Unit. He was so happy to ride in the wagon.
View from the room.
Once most of the tubes were taken out and some of the cords could be temporarily disconnected the hospital had a play room for the patients. This motivated them to get up and about and although it was very hard for Sawyer to start walking after a couple days in bed he was very enticed by the toys and the fun and did so good.
I'm so thankful for all of our friends and family who prayed a ton and helped and comforted and supported. I know this isn't the last thing I'm ever going to have to worry about with this boy...Soon enough I'm sure he'll be sneaking out of the house. All my love, Aly
