We went to Detroit to see Dr. Capone based on the advice of a retinal surgeon who examined Thomas when he was five days old. Our local surgeon said that he felt comfortable doing the surgery but that if it were his son, he would take him to Dr. Capone. Well that's all we had to hear. We hadn't even left the office before I was on the phone with my friend to see if we could stay with her and her fiance for the surgery. We are amazingly lucky to have a good friend who lives very close to Beaumont Hospital in Royal Oak Michigan, where Dr. Capone is located.
So when Thomas was two weeks old we drove to Detroit. Let me tell you, you get some weird looks when you are at a rest stop with a tiny newborn (Tom was 5.15 at birth.) People think you are crazy for taking a baby long distance. But Tom was a good traveller and sleeps better on long drives than he does at night.
Since Tom was very young he was the first surgery of the day. We arrived at the hospital at 6:00 am to have Tom prepped for surgery. They gave Thomas several rounds of drops to dilate his eyes for surgery, put him in a tiny hospital issue onesie and washed his face with special soap.
Finally the surgeon came into meet us. We didn't know what to expect but our expectations were big because all our hopes were riding on this doctor. He began discussing the examination they were about to perform and then said after the exam I will come and talk to you, then if we decide to do surgery... And all I heard was if! What do you mean if? This is it! His only chance. Dr. Capone explained that if he didn't think he could help Thomas he wouldn't put him through the surgery. While I understood the wisdom in this, my heart did not. I was worried our one chance might not be a chance at all.
The doctor left to prepare and soon the nurses came to take our tiny Thomas off to surgery. We had only had him in our lives for two weeks. Handing him off to that nurse was just unimaginably hard. I can still clearly remember watching them take him down the hallway to the operating room.
To the waiting room. The strangest thing is that you are in the waiting room with people whose children are getting tubes in their ears or some other simple thing while our child's sight is on the line. But it wasn't that long before the doctor appeared and ushered us back to a small conference room with a dry erase board to discuss his finding. He drew a normal eye and then he drew what he saw in Thomas' eye. And then he said that he felt he could try to help Thomas. He didn't give us false hope and kept our expectations in check. But he did think that he could make an improvement. That was the first positive bit of news we had about Tom's eyes. He quickly left us to go perform the surgery on Thomas' right eye.
Back to the waiting room and this time the wait was long. Nothing to do but sit and worry and hope and plead with God. Eventually the doctor returned and ushered us back to the little conference room. He said that everything went as well as he could have hoped! We would learn that this doctor doesn't play with your emotions; he just tell you right up front. I know I appreciated that. All that was left to do was wait for Thomas to wake up.
Let me explain a little more about the type of surgery that was performed. Thomas' first surgery was a vitrectomy of his right eye; the first of five such surgeries he would have. They only operate on one eye at a time in case any problems result from the surgery. In this procedure, the vitreous gel that fills the middle of the eye is removed so they can access the back of the eye. Thomas also had a lot of scar tissue that the doctor had to painstakingly untangle and cut away. After cutting away the scar tissue the doctor could see the retina and the back of the eye. He found that Thomas had blood vessels in the back of his eye that would allow the retinal tissue to live if it could be reattached. The scar tissue was also stuck to the retina itself. Thomas had what is called a tractional detachment. The scar tissue in his eye was stuck to the retina and pulled it out of place.
Dr. Capone described the retina as a wet piece of tissue paper and the objective is to smooth it out without nicking it. It's game over if you nick it. For infants they don't actually reattach the retina in the surgery. They flatten the retina into position and put a gas bubble in the eye to press the retina where it should be, allowing the body to naturally attach the tissue.
The doctor sent us back out to wait for Thomas to wake up from anesthesia. A wait that was made longer by the fact that I was nursing and was starting to be in pain because the milk was building up. But I thought we would soon be home because this was an outpatient surgery. Except that it wasn't! The only information we had in preparation of surgery was where to go, when to arrive, and when Thomas could have his last fluids. They forgot to tell us that since Thomas was so young they would keep him overnight to observe him!! We only had a diaper bag with us and I was breastfeeding via pump and did not have it with me. But we forgot all about that when they called us back to the recovery room.