Time has been going so fast and yet so slow while we sit here in the hospital. Aaron is now 45 days old and 39 days past his modified Norwood (that's the name of his first open heart surgery).
So many emotions these last few weeks. Excitement about going home, disappointment when we didn't get to go home, fear when we learned of yet another thing that is wrong with his heart, sadness over missing our older two boys; and round and round it goes!
About 2 weeks ago we were completely ready to go home, we had done all our training about how to take care of our heart baby and he had done the things that he needed to do to go home. Then everything came to a halt. So hard to be so ready mentally for something as big as taking a baby home from the hospital and then to be crushed when it doesn't happen. Aaron stopped eating as well as he had been, his oxygen stats were lower, and he was more sleepy. Those are the reasons that we did not go home two weeks ago. All good reasons! All things that gradually happened and went a little unnoticed to us, but thankfully not to the doctors. Because of those things the doctors really wanted us to wait, and it's a good thing we did. A week ago Aaron had to have an emergency blood transfusion. His oxygen got very low as did his heart rate. Praise the Lord we didn't go home! We would have been making an emergency trip back down here. After getting over that disappointment we decided it's best to stay here as long as the doctors think it is necessary. Definitely doesn't make this any easier.
We found out this past week that Aaron has something called WPW (Wolff Parkinson White). This is just another thing that God is going to be using in my life to grow my trust in Him. It may not display itself at all in Aaron's life, but it could and his heart wouldn't be able to handle it. People who have this have an extra pulse in the heart that can cause the heart to beat way too fast. So, since Aaron only has half a heart, it wouldn't be able to handle all the extra beats. Giving it to God. We have been told that since it hasn't shown up to be a problem so far that we won't have to worry about it. They will take a closer look at it when he comes in for his final surgery when he's around 3.
It's a very weird feeling when life keeps going on all around you and you feel like you haven't gone anywhere. As summer comes it's so hard to not get discouraged sitting in a hospital room. Thankfully we can take Aaron outside! That's a big blessing! We go and sit in the garden and enjoy the warm weather!
Through this journey I have always said that Aaron was chosen. This is the path God has chosen for him, there is nothing genetic in what happened to his heart. It was how God chose to form it. I was reminded recently that God not only chose Aaron, He chose ME! He chose me to be this little boy's mommy. He thought so highly of me that He gave me Aaron to show his love. To teach me all these things that He is teaching me. I can't even fathom it. I was chosen because God loves me.
