April 26

Hey Sweetness!

I am so happy to say that the surgery on Friday actually happened and you have your eyelid lift! I was worried for that morning because you weren't taken away for our 7:30 surgery until about 9:30. Whenever we run behind schedule, your veins shrivel from dehydration, and a very difficult stick becomes nearly impossible. In the past we have had one surgery cancelled because they couldn't start an IV, and a couple others that have taken at least a dozen attempts. I kept warning the nurse about our past problems while we were waiting, but there was nothing that could be done because our doctor had an emergency 6:00a surgery and was still in the OR. Sure enough, when it was over the anesthesialogist apologized for turning you into a pin cushion; Daddy and I came home to count 27 stick marks. I am just so grateful they finally got one, because if they had cancelled this surgery, it might have been months before we got another chance.

Right now you are doing really well. You don't seem to be in too much pain or even very uncomfortable. The worst part for you is going to sleep. You have always been a good sleeper, and go down without a fuss. But the last couple of nights you have cried for 30 mins to an hour, I think out of frustration. You want to go to sleep, but getting there is hard when your eyes won't shut. Thankfully, when you do finally drift off, you seem to sleep well with your eyes open.

This has been a really tough surgery for Mama. We have had either nine or ten surgeries in the last ten months, and this one has been by far the worst for me. Probably not for you--I think the ostomy reversal was the most painful. But I have had a hard time seeing you look the way you do. For the first time I cried when I saw you in the recovery room. Your eyes were so swollen, bruised and bloodied--I wasn't prepared for that. I should have been. Other SLOS parents whose kids have had ptosis surgery warned me that it would look like you had been thrown through a windsheild. I just don't think there was a way as a parent to possibly brace myself for the way you would look. Plus, with your eyes pinned open, your expression (although normal for any other kid) looks surprised and scared to me, since I am used to your cute little sleepy look.

Because of all this, I haven't handled this weekend like I wish I could have. I have somewhat withdrawn from the situation, shied away from being the primary caregiver, and asked Daddy to do most of the dirty work. I went to work for several hours Saturday morning, and when I was home and you cried, suggested Daddy be the one to comfort you. Even when it was up to me, I averted my eyes from you and didn't look you in the face often. I am sorry. It wasn't that I was squemish of the blood or the way you looked. And it definitely wasn't because I didn't want to cuddle you close. It was because it looked so shockingly painful, and I was afraid of hurting you. I have had to do a lot of things for you that caused pain, and have seen you go through more than I would have ever imagined. This one was too much.

I began to question myself a little if this was the right thing to do. I started thinking how well you were doing before the surgery with opening your eyes, and how you loved wearing your contacts. Grammy assures me it was necessary, and while we thought you looked like you were opening your eyes more, those who didn't know you still always thought you were sleeping. And I know how critical this surgery is to being able to hold your head up, which leads to the rest of your development. It was the right choice. But it is a terrible thing to see you go through.

I don't have any pictures for you. Maybe I should have taken a few for other parents whose children will have this surgery, so that have some idea of what to expect. Perhaps it will be easier to see on a child other than their own in order to mentally prepare. And maybe I still will, for their sake. But for me, I have no desire to capture the image on film.

I am not sure how long recovery will last. Already the swelling has gone down quite a bit, the bruising has lightened, and the bleeding has stopped. Your eyes are staying moist, which is the biggest hurdle. And I just keep reminding myself that even though the SLOS group told me it was the most difficult surgery to go through, it had the biggest pay off in the end. Already Daddy and I think you are holding your head straighter, and not as far back.

You and I are so blessed that you have such a strong, sweet Daddy. He took over and did a great job mothering you this weekend. Tomorrow he goes back to work and you and I will be just fine. It helped me to watch how he held you, to see you aren't as fragile as I thought. And the highlight of our weekend was the handful of smiles and laughs you gave us. That shows me more than anything that it looks a lot worse than it feels.

I love you so much, and even though it still isn't very pretty, I love seeing your big, blue eyes. It is going to be so worth it little one, you'll see.