SAM

During the time I was dealing with all depression and anger at God. God spoke to me one morning on the way to work. I can even tell you where I was on Hwy 98 south at the last red light by the 7-11. God spoke clearly and told me that I would have a son named Samuel and he would change my life. That was it with no details! I don't go around getting words from God but I knew in my heart it was from Him. This was probably 3 or 4 years before he was born.

So Jon and I decided time was running out if we were going to have another baby. I went on fertility drugs for almost a year and finally I got pregnant! There were problems from the beginning. On a ultrasound, his heartbeat couldn't be detected. I went every few days and although the egg sac was growing, there was no heartbeat. Finally 2 weeks later there was a heartbeat.

Then the morning of our 14th anniversary, I woke up to blood everywhere. We just knew the baby had died with that much blood. Jon rushed me to the hospital where they quickly did an ultrasound. The tech reassured us there was a heartbeat and asked if we wanted to know the sex. I nodded yes as I was crying from relief. "It's a boy!" I really started crying then because I remembered what God had spoken to my heart. She thought I was upset that it was a boy.

So onto bed rest! That is so boring! I stayed on bed rest for a couple of weeks then tried going back to work and I'd start bleeding again. finally I just went on bed rest until my 30th week. Then I got permission to go back to work but was only for one week. Then the doctor began worrying about my low amniotic fluid and the baby's lack of growth. Back on bed rest...

The next week the doctor decided the baby needed to be delivered. At that point, he would do better on the outside than the inside. For the first time in my life, I was speechless. The doctor was concerned when I just looked at him. He was sending me over to the hospital to get a steroid shot to help Sam's lung development and wasn't sure I could drive. I was barely 32 weeks, not really showing and knew the baby would be facing some issues at delivery. Anyhow with me speechless, the doctor was really worried. We all got a big laugh about that later. It's probably one of the few times in my life that I've been speechless! I was terrified. Then when I got over to the hospital for the shots, I got a tour of the NICU. I'd never seen babies that small, so I really got scared! Steve was technically a preemie by a few days but he did not suffer any problems having been born right at 36 weeks.

On February 11, 2004, at 10:14 am Samuel Jonathan Clanton came meowing into the world via C-section (which is God's gift to women!!!!). It was a tense delivery as we didn't know how he'd do once he was delivered but thankfully he did breath on his own although he eventually was working too hard and had to be bagged. The doctor brought him to me so I could see him, they were bagging him so of course that had me terrified. I shooed them away and told them to get him to the NICU! He actually was doing ok but it was a new experience for me to see a tiny 3 pound baby being bagged and ventilated!

He did well throughout the night and was on room air by the next morning. We were so pleased with how good he was doing. I got to hold him and my brother in law took pictures of me holding Sam for the first time. The noise or the flash caused him to open his little eyes. The picture above is the moment that forever changed our lives. When Sam opened his eyes, I was looking into his tiny face, and Jim was taking a picture from over my shoulder . At that moment, I knew something was terribly wrong. I quickly asked for a doctor. No one had noticed Sam's eyes, up until that point. I called everyone over to look at him. The nurses and the doctor basically poo-pooed it. The NICU doctor told me that premature babies often had vacant looks in their eyes. Well Sam's eyes were cloudy, the iris and pupil were not easily seen through the haze is his eyes. On top of that the eyes were incredibly small his left eye was noticeably smaller than the right eye. It looked as if he was a baby kitten with his eyes only half opened. The doctor ridiculed my conclusions and told me to chill out. Ok how many people reading this know me??? You don't say something like that to me!

There were so many other issues, his feeding, apnea etc., that I let the eye situation rest for a few days as the doctor promised he'd bring an opthamologist in to check Sam out. I kept waiting and on the day Sam turned one week old, I told Jon before we got to the hospital that I was going to throw a fit and hoped he wouldn't be too embarrassed. I was tired of waiting and tired of being nice. I went in the NICU that morning with a purpose, when the doctor made his rounds, I began questioning him again about when the opthamologist was coming and he told me that the guy wasn't going to run any red lights to get here. (just writing this makes me want to punch his face in-what a good pastor's wife I am). At that comment, I got my sore body out of the rocker and got in the doctor face and told him in no uncertain terms that he better get the eye doctor there soon and he better pray that Sam's problem was not getting worse because he was sitting on his butt doing nothing and he better not ever speak to me like that again! Needless to say the NICU was silent, all the nurses and parents were listening to my every word and they did not have to strain to hear me!!! It's probably a good thing I'd just had a c-section or I may have thrown that doctor around the NICU a few times.

Finally the opthamologist got there that evening. He examined Sam and came out to speak to us. I'll never forget him(and he probably won't forget me either!) He set on his rather large briefcase in front of us and said very compassionately "There is no easy way to tell you this.." I just starting saying "I know he's blind" and crying, Jon was crying, Steve was there and he started crying (later we found out that Steve thought Sam had died). It was heartbreaking. Although we knew something was wrong, everyone around us kept saying everything was ok, so to be told we were right was not what we wanted to hear. I remember trying to calm myself down so I could listen to the eye specialist. He explained that he'd never seen what he suspected that Sam had, "Peter's Anomaly" He explained it was very very rare and in all his years of practice, he'd never examined a patient with the anomaly.

After he left us, to no doubt have a stiff drink, I had to go hold Sam, to touch him and to remind myself he was the same baby he was before that diagnosis. We also had to comfort Steve and to explain to him what the doctor had told us. So we all trooped back in the NICU to connect with Sam. The NICU doctors ate crow to say the least. They both apologized to us for not taking us seriously. They both said they had never seen anything like what Sam has. I told them that they need to listen to parents.

That experience, has unfortunately been the norm for me with Sam. I've had many experiences similar in other areas where doctors did not listen to me. I now double check everything and totally go by my gut if I feel something is not right. In the beginning, like in the NICU that day, I was somewhat embarrassed to confront medical persons, now it is second nature to me. I've delayed surgeries, had doctors and nurses thrown out of his room and off his case, and I've signed him out of the hospital against medical advice (that was when they put him in the room with a baby with RSV!!- they wouldn't change his room so I signed him out and took him home. He was only there for observation following an eye surgery) I don't even get embarrassed anymore. Jon has even become out spoken over the years. Last fall when Sam lost all his sight and had a couple of surgical procedures back to back, I couldn't walk him into the OR, I just was so upset so Jon took him and he quizzed the anesthesiologist as thoroughly as I would! Go Jon!

That night after we got home, I went into Sam's room and just lost it. For years I didn't remember this episode but now I do, it's like a bad dream. The room was so cute, everything was a sweet Winne the Pooh theme and there was a large oval window at the front of the room. It was a perfect nursery. All I could think was that Sam would never see that cute room.

When I say it was a rough time, I mean it was rough! Sam spent a month in the NICU and during that time, we began learning to live with Sam's blindness. That meant calling and trying to get services for him, we did not have any experience with a blind child and it meant rethinking our lives. I'd wear the same perfume every day, Red Door, so he'd know it was me and not a nurse. To this day, he has an incrediable sense of smell. All day long I stayed at the NICU with him. When he was asleep and there was nothing for me to do , I sat in an office calling agencies and trying to figure out what we were going to do. When we would get home late at night, I'd go on the computer and research his eye problem. I got little to no assistance from anyone at the hospital except for one nurse who told us her son had gone to Bascom Palmer at the University of Miami for an eye surgery. We found out through our research that children with Peter's were candidates for corneal transplants as the cornea was one of his main issues. The cornea is like the windshield of the eye. It protects the eye like a windshield protects the occupants of a car. However the windshield must be clean for the driver to see through it. In the same way, if the cornea is cloudy or diseased, even if there is nothing else wrong with the eye, a person will be blind or partially sighted.

So we began to look at hospitals that did corneal transplants on children. There are only a few. We decided on Bascom Palmer because it was closer that any other ( Ceder's -Sinai Calif., Emory-Atlanta, John Hopkins-Maryland) and had an ok success rate with the transplants. Kids reject corneas at a HIGH rate, much worse than any other transplants. The cause of the rejections are unknown. I'm so glad we chose Bascom Palmer, not just because it's closer but it's become like home to us. On our first trip there, I just could not see how we would make the commitment to it as we know we'd be there alot. It's in the middle of the hoody-hoody in Miami! There's about 15-20 different hospitals on the campus. It's a huge area between Little Havana and Liberty City (think riots in the 80's) Why are so many hospitals in bad inner city areas????

Anyhow I just couldn't see us going there on a monthly basis as we were told we'd have to do for years. Oh well, I got over it! Now there's nothing like the relief I feel driving up to the front of BP knowing whatever is going on with his eyes is going to be taken care of!! I've even gone on my own with the kids. It's amazing what you can adapt to when you have to!!

So when Sam was 4 weeks old, we brought him home with an apnea monitor. He was about 4 and 1/2 pounds. Little did we know the "adventure" that was ahead for us. God gave me a Samuel who changed my life!