A month later

A month ago, we were discharged from CHP from correction AVSD open heart surgery. Reflecting on the night and days after your surgery it is difficult for me. I must admit I get emotional thinking about the days we had leading up to the surgery not to mention that day and days following. I admire the courage he showed even though I know you were terrified. The morning of the surgery you were exhausted and put on a front for everyone who came to the hospital to support you. I know this because you kept your distance, was quiet and moved swiftly when they called your number, #66, for pre-op. When we met with the surgeon and anesthesiologist you listed carefully and tensed. You changed into your gowns and I got my cover up gown on, because as promised I would be with you up into the last moment before the surgery began. We walked down the long, cold  hallway and into the operating room, over to the table to have you lay down. Our foreheads touching and holding the 10 second gaze deeply into your terrified eyes assuring you I would be your first view would be my face when you came to, you drifted away to undergo open heart surgery that will close the massive holes in your heart.

They surgery took several hours but it went well. Your surgeon met with your Dad, Jeremy and me and told us how well you did. He stated your heart was working in such a "decreased way" that with the corrections it will significantly improve the quality of your life. There were no complications, only needed the pace maker for a short period and there was not need for it to be implanted. Your pulmonary artery hypertension was practically nothing. The surgery was a success and while there still was a small leak in your mitral valve it was only a minor issue.

Shortly after meeting with your surgeons we were able to visit with your in CICU. You had wires and tubes everywhere and an oxygen mask helping you breath. You looked so frail, so little in that large bed, so helpless with all the tubes and nothing like the boy I knew. You slept the better part of the day, regardless of the revolving door of visitors you had. Everyone that left your room was teary eyed. It was difficult to see you in that condition. Your sister took seeing you like that very hard and broke down crying, everyone did. I did my best to keep it together, I needed to be strong, like you were being. I stayed with you day and night and the hospital staff tried to get your blood pressure under control. The next day, was a little of the same but the wanted you up and moving as soon as possible. You had difficulty with the pain medications which made you nauseous to the point of vomiting and you had to be put back on the oxygen to help with the pressure and tightness in you chest to help you breath. I got the opportunity to look at your X-Ray and chest looked better since the surgery already. I got to see the metal wires that your surgeon used to close your ribs, it looked like twisty tie spirals with a bow tie not... it was just amazing to see your heart working properly while you looked so terrible on the outside. All I could think how was it possible for you too look so good on the outside when your heart was not working correctly and now you look so awful and you are heart is working better than ever? Apparently you didn't look so terrible to the hospital staff... they said you were doing wonderful. You didn't complain about the pain too much, they kept you comfortable but you did want the chest tube out... and the pic line in you neck gone. You asked everyone person that walked into the room if you could have a tube removed.

When you finally go transferred to a step down unit, the transfer exhausted you. You feel asleep in the chair. We took walks and it completely took every bit of energy from you, only to take what you had left in you to do your breathing treatments. You kept your spirits up when you had visitors but when they left your spirits fell low. They days progressed and so did you, you were a warrior and just kept fighting until we left the hospital. Relieved to leave, a month ago we headed home for your to recover.

Since we have been home you have just done amazing. With everyday you got stronger and stronger. The color back in your face, the smiles and laughter sauntering back into our lives. The boy I knew and loved is back.

You see, I have thought and thought about how I wished I could have prevented this. How I wished we would have at least have known after you were born so we could have had this corrected earlier. How I thought it would have been easier when you were just an infant cause I would not have had 13 wonderful years of experiences with you that I had to look back upon and worry that there wouldn't be any more going forward. Until today I was angry, but today I realized that you had 13 years strength built up and your  love for life that made this difficult procedure a testament to your strength and much easier to overcome this corrective surgery. Today we heard of a friend who lost their infant child. A child who never had a chance for a life of smiles or the strength to fight.  It made me believe even more than I have come to believe over the last months that we, together, need to stand strong in the face of CHDs and tell the world that we need to fight against them too. There are infants that do not have the will or the strength that you did to fight like you fought. I now wish you can be the role model for all that are afflicted by CHDs but can not speak for themselves. You can show the world your strength and share it with other children and their families to give them hope. The strength and will of a warrior can and will inspire hope. You are that warrior.