Anyway today is world prematurity day. Something really close to my heart. Jason was born premature when I was 31 weeks pregnant. His birth weight was 1kg. I don't often think of those times. I actually think you tend to block them out. You never forget what you went through and what you witnessed in neonatal ICU but you do block it out. Well I do. Sometimes I actually get so tied up and involved in all Jason's other issues that I forget how he entered into this world a tiny little baby clearly not ready to be born yet. I had an emergency caesarean due to the fact that from 27 weeks my amniotic fluid was low and at 29 weeks I was given steroids to prepare his lungs and went on bed rest in prepare for his early arrival. The specialists decided that it would be better for Jason and for myself for him to be delivered early. He stood a better chance of survival outside. For Bruce and myself being first time parents to an absolutely tiny baby was very daunting. We had no idea what we were in for. Being first time parents to a full term "normal" baby is scary in itself but a baby the size of Jason was very frightening. Nothing was normal. Our baby was not allowed to wear clothes because he needed heaters to regulate his body temperature. He had all sorts of tubes and wires connected to him. We only were allowed to start feeding him on day 3 and feeding consisted of holding a 5ml syringe connected to a naso gastric tube, pouring 3mls of expressed breast milk and slowly allowing that to go down his nose and into his tummy. 3mls every three hours. Bruce and I only got to hold our son on day 13.
When I look back and remember these things I am reminded of what a miracle he is and that it's a miracle that he is with us today. He has been through so much in his little life and a lot of that is due to the fact that he was born so early. He wasn't properly developed yet. Heck he still was meant to have 9 weeks to grow and he really had the odds against him that he wasn't getting enough amniotic fluid stunting his growth as well.
Is all his issues due to him being born too soon?? I am not sure. I believe his kidney problems are as this was picked up in utero before he was born - also the obvious reason for my amniotic fluid being low. His urology problems - hypospadias and chordee - I would say yes as well as he didn't develop properly. The eating problems, well that could also be related to early development. Demylinization on the brain - I don't believe that was due to his prematurity as it was not picked up in all the early brain scans. I believe this was a result of an infection he had. Combined primary immunodeficiency, this could very well be because of his prematurity as well. Cyclic vomiting syndrome - there is litreture to back this up that preterm delivery could result in this. It is still a question whether he has mitochondrial disease and this is something we need to go to Pretoria for in order to do the test. Then of course strong pain threshold, never had tears. All of these things could be a result of an underlying genetic problem, disease or illness. Who knows.
Why am I saying all of this - heck I don't know. I just got carried away lol. I just look at my little baby lying here in the hospital bed next to me and I think about where he came from, how tiny he was and how much he has overcome and achieved. It's a miracle that he is alive today. He is a miracle. The things our little man has to go through is difficult for Bruce and myself to watch. The amount of illnesses and hospital stays he has had to go through and he NEVER complains. He goes through what he goes through and runs out of this pediatric ward all happy and ready to face another day. Nothing gets him down. He is amazing!! I look at what he has achieved this year with his speech, his eating, his overall nature. He has grown and really taken off this year and we are so blessed. He is going to a fantastic little special needs school that assist us with all his needs. God has really answered prayers and been with Bruce, myself, Jason and Nicole every step of the say. He has blessed us with the right doctors and therapists, a beautiful little school, the right treatment for his illnesses, blessed us both with jobs, always provided financially for our needs and given us the strength to keep going. So yes from a tiny little premature baby into a beautiful, strong little boy we are truly blessed!!
Will we stay the night, I don't think so. The last bottle has just finished. It is 9:50pm and hopefully his fevers will stay away. I will keep an eye on him tonight and see how he is tomorrow. He usually battles a few days after treatment. Their bodies react to foreign matter and polygam is a foreign matter which they have to process.