I am just writing this because I am at my breaking point. I am a mother of three little boys, the oldest if 4, middle 2, and y baby 7 months. The baby, his name is Ayden, was born premature at 32 weeks. We knew when my water broke early that there was a chance that he could have to go into the intensive care unit. The doctors said that he may have to go there for a few days or so, until he could prove that he could eat and breath well on his own. We had accepted that as a possibility. But we had no idea that would not be the case. After 21 hours of labor with little progress the doctor said that if he did not stop showing signs of stress, and move down to deliver, that he would have to do a c-section. He gave me 30 more minutes to make progress, and then came back. I had made even progress that he could be delivered vaginally. And then at 6:53 p.m. he made his entrance into this world. As soon as the doctor cut his cord he was handed off to the team of doctors that specialize in premies. All I could do was sit there in silence and wait. There was nothing, no cry, no real movement. Just a little tiny baby. Then out of nowhere he screamed. I think that was the best feeling I have ever had, just to know that he was alive, and breathing. The nurses cleaned him up, and wrapped him in a little blanket. Then she brought him over to me. But something wasn't right, he was starting to turn blue. I paniced, I told her to take him away because he was turning blue. So she rushed him back over to the table, and unwrapped him, then they rushed him out of the room and into the nursery. I could not stand it, I knew nothing. The only thing they would tell me was when the doctor gets him stable he will come and talk to you. All I could do is wonder. My husband went down to the nursery to see if he could get any information from them. When he came back to the room he had the oddest look on his face like there was something that he did not want to tell me. I knew something was not right and demanded that he tell me. He said that when they got down to the nursery he stopped breathing, and they had to put him on a ventelator to keep him alive. Of course I freaked out and just cried and cried. And I could not see him at all. So finally the doctor came in to talk to me, and he told me what I already knew. Then he told me that they were going to have to transport him to a different hospital that had a NICU in it. So they took him there and they let me out of the hospital early the next day to go be with him. When I got there, he was so tiny, all of these machines around him, tubes coming in and out of him, it was heartbreaking. I could not even hold him, or touch him. They said that touching him could bother him, and they just wanted him to rest. The next day they were able to take him off the vent, and put him on a c-pap. He was doing better, but we still could not hold him or anything. A week later he was still on the oxygen and pic line, and feeding tubes, but he had gotten off the c-pap,and just moved to nasel canulas. He seemed to be doing well. He was growing, and taking his feedings through the tube well. Then one night in the second week something else went wrong. We never had a phone call or anything, but when we got there they would not let us in to see him. They said that they had to get him stable first. I was freaking out again,not knowing what was going on. Then finally they let us in, they said that his sodium levels were really high, and that he was very adgitated because of this. They had no idea what caused that to happen. But no matter how much fluid they gave him, it was still high, he just kept peeing it out. They thought there might be something wrong with his kidneys. So they did lots of tests on them, and all of them came back ok. So then the sodium started to go down, and they slowed the fluids down, and he was doing good again. Then he had another spell and the sodium was up again. This time they said that he could have a type of diabeties. Not sugar diabeties, but central diabeties insibidus. A rare type of diabeties that involves the pituitary gland.
The next weekend we were sent home from the hospital with a strict intake schedule. He seemed to be ok, we had been refered to go to childrens hospital the next month. Which was way to long, for someone who had something so serious. But we went for blood work every week to monitor it. When we got to childrens the next month, they admitted him right away because it was up again. They did lots of tests, and concluded that it was the diabeties. They started him on a hormone that replaces the hormone that the pituitary gland is suppose to produce. After they got him regulated on that hormone he has been doing well with that. He gets therapy three times a week for strengthening, and motor skills. And last month we had an eye appointment down at childrens hospital and they found out that he is blind. That was the straw that droke the camels back. To me, it was almost like a death sentence, because he would never see me, or his brothers, or his dad. Never see the sun, the sky, animals, anything that we take advantage of everyday. I cried all the way home from Little Rock, a four hour drive, turned into much longer, because I had to stop to collect myself. It was just me and the kids. So now I am trying to juggle three little boys, all very young, and one with a handicap. I am trying to do everything I can to teach him everything that I possibly can. I am going to educate myself, and teach y other children too. Sometimes I don't know if it has really set in yet. Because the vision therapist came today, and brought something for him to help teach him to see some light. And I dreaded them coming, because then I would have to face it. And see these things here, and know that this was really happening. My heart is just broken over this. There is not a day that goes by that I don't wonder what I could have done different. Everyone tells me I should not feel this way. But there is nothing that they can say to change my mind. I just have to work through it. And I will eventually.
I just want as many people to pray for him, and for our family as possible. We could really use the prayers right now. He is already on lots of prayer lists at church's in this area. But every single prayer helps. Thank you all. God Bless my
