Monday, May 4th.
It's hard to comprehend that our sons were less than 2 days old when the doctors had to start talking about surgery for Alex, to close the opening in his spine. We ofcourse knew this had to happen due to the spina bifida but at the time we were learning about it, we just assumed that he would be much bigger and stronger. Talking about doing surgery on one of your children is terrifying enough, talking about it in the context of a less than 2 pound baby already hooked up to seemingly every wire and machine was very hard to wrap our minds around.
We knew that time was of the essence, every hour that went by where his back was left open meant higher and higher risks for infection which could lead to devastating outcomes. Ofcourse they also had to explain all the risks that came with anesthesia and surgery in a baby this small. Ultimately everyone agreed that to give Alex the best possible outcome, surgery had to be done and waiting even a couple of days could be detrimental. Surgery was scheduled for that afternoon.
With the help of several incredibly compassionate NICU nurses, we were able to page the NICU chaplain and have both the boys baptized that morning. We hope to do a more formal ceremony in the months to come surrounded by our family and friends but felt compelled that this was the right thing to do for our sons as soon as possible.
The surgery was expected to take approximately two hours from beginning to end and time went by achingly slow. Just before they took Alex into surgery, they had an obligation to inform us of all the possible things that could go wrong and its pretty hard to stay positive in the face of all that knowledge. Luckily, we had our parents with us, we held onto them, eachother and our faith. I'll never forget when the surgeon walked into the room afterwards, I don't think any of us could take a breath and he didn't have the type of face you could read. But when he said things went as well as could be expected, there was such a huge sense of relief that somehow could be physically felt by everyone.
I know this road is going to be a long one for both of our sons, and Alex in particular has some very special challenges. I wish I could take the struggles from them, my heart aches to make things better somehow. We are not allowed to hold them and have barely been able to touch them due to their under developed nervous systems and how easily over stimulated they become to even light or movement. So we sit next to their incubators, tell them over and over how much they are loved and pray that they can feel our presence and that its enough to comfort them somehow.