After a night of barely any sleep Dr Danby had decided to release me from the hospital early because they still had no room for me at Maine Med. Which I was very grateful that I was able to have a successful V-Bac or I would still have had to remain at the hospital for a few more days.
Still with alot of unanswered questions Corey, Grayson and I headed to see Jackson. The only thing we knew for sure was that he was indeed a boy. The reason for them being unsure of his gender was because he has a buried penis. That news was a huge relief. It was hard not to think of the many months that I was convinced that he was a girl and to think that this was some how my fault but also explains why during the last ultra sound I did not see a penis. Then I was mad at the doctors for not letting me have another ultra sound because if they did maybe we would have seen the things about him that they were questioning and we would have been more prepared.
We arrived to see Jackson in a closed bassinet with a bunch of wires coming from him and a breathing tube. We were given very little information due to them being unsure of what was going on with him and still running a bunch of tests. They had ruled out downs but due to all the swelling they still felt that he had some sort of syndrome. They had called in a genetics specialist to try and get more answers but they said the tests could take up to two weeks. They did an echo gram and found that there was alot of pressure around his heart and lungs which was causing the rapid breathing and high heart rate. They also found that he has a hole between the top chambers of his heart and a smaller hole in between the bottom two chambers. Also his feet where turned in sort of like clubbed feet so they wanted an orthopedic to check him out. They though during an x ray that they found a small mass in his abdomen and they also thought that his long bones where shorter then normal. They wanted to follow up with an ultra sound and more x rays. It was awful hearing all these things that could be wrong with him and not being to hold him and sooth him besides putting your hands in the little opening in his bed.

During the next couple of days he was getting stronger and they took up the breathing tube and he was given just a little bit of oxygen. I was able to finally hold him after a little over 52 hours which were the longest 52 hours of my life. They were still doing lots of blood work and everything was coming back fine. The extra oxygen was relieving the pressures around his heart and lungs. Due to him still having points where he would breath really fast they decided that it would not be a good idea to try and feed him by breast or bottle so they inserted a feeding tube. His swelling was going down slowly but each day he started looking better.

Eventually he was strong enough to have the cover removed from his bassinet and the orthopedic came and said that his feet should be fine with just a little bit of stretching because they are not true club feet. We also found out that there was no mass in his stomach and that his long bones where fine. Within no time he was transferred to a regular crib but was still having rapid breathing so he was still being fed by the tube. The pressure around his heart and lungs were better so they decided to stop the extra oxygen April 22 which meant that if he did well then I would be able to try bottle feeding him the following day. His was not able to take all of his food with the bottle so they continued giving him the rest in the feeding tube. Since that was his only issue they decided he was well enough to go to continuing care.

He was moved to Continuing Care on April 25. The next day I was able to give him his first bath!!! Finally thing we starting to progress. I got a call from the Genetic Specialist and the results were in and she wanted to meet with me. All I could think was there must be something wrong or she wouldn't want to meet with me. I am thankful that my grandparents were there with me that day so I wouldn't have to get the news alone. The genetic specialist started talking about different chromosomes and what was normally and then she began to explain what they had found out about Jackson. The found out that he was missing part of his 15 chromosome and has an extra part of the 4. What does that mean? Honestly they are not completely sure because he is missing a smaller part then what is normally missing with the 15q Deletion and has an extra part of the 4 which is also smaller then normal. I was given pictures to show what his chromosomes look like compare to a normal set that everyone else has. We were informed that either Corey and I could be a carrier so we should get tested because it could show up again when the boys have kids or it could just be something that just happened without any reason. She explained that this would cause Jackson to be smaller and to possibly have a problem with learning different things. It also explains the buried penis, the heart defects and the feet and smaller fingers. I was given information on both Chromosome defects to look over.
After getting home and settling in I got a call that Jackson had an episode and was back in the NICU. He was having his diaper changed and got really mad and stopped breathing and had to be bagged. What a terrible day finding out that my poor little boy may have all these complications as he grows and then hear that he had a rough night and I was not there with him. It made me mad to think that I had done everything right while I was pregnant. No drinking, no smoking and no doing drugs. Eating what I should, taking my vitamins and having my regular check ups and my poor little man was still suffering and the people that do everything wrong and they have a perfectly healthy kids how is that fair. That night couldn't get over fast enough so that I could be back there with my little man.
I showed up the next morning and they said that he was doing so much better but they wanted to keep him there an extra day so that they could monitor him closer. I was so happy to see him. The next day they moved him back to continuing care were we worked to get him to eat all he could by bottle. It was so frustrating because the kept saying he wasn't gaining enough weight so they kept increasing his food amount. I didn't think we would ever get him home. During my time at home I began reading the information that was given to me by the genetic specialist and it just made things worse. Parents had written stuff about there children still having feeding tubes at 7 and not being able to walk at the age of 4 and they had a picture of a brother and sister standing together and the sister that was 4 was about a foot shorter then her brother that was 2. It killed me reading that stuff not because I was upset by what I would possibly have to deal with but of what he will have to go through as a child. Growing up is hard enough but to grow up and being different was something that I was not prepared to hear my child would have to deal with but he is proving to me that he is strong and will continue to amaze me and everyone else as he grows.
After lots of talk with his doctors they had agreed to let him come home but he had to continue with his feeding tube. They set me up with a monitor and feeding pump and showed me how to use everything. A day before he turned a month old they were letting him come home finally. In came all the specialists to check him out one last time and lots of follow up appointments had be scheduled. It was decided that he will need to be circumcised at a year old to help with his buried penis because they think that it is being forced down by the tight foreskin. He will need to follow up with a hearing specialist because he refereed on his left ear, follow up with the cardiologist, and monitoring as he grows from the genetics specialist.

That day he took his whole feeding twice before we left and has continued to do so since we left which is one less thing to worry about and I finally have all my boys under the same roof after almost a month. After a day of him being home he was eating like a champ and at a month old rolled over so much for having delayed learning. He is amazing me more and more every day.
His first follow up with the cardiologist is showing improvement and she feels that nothing should effect him as he grows but would like to follow up in 3 months. He is gaining weight like a champ he is now 8lbs and 1oz!!!! He will continue to have his weight checked 2 times a week with a visiting nurse and every 2 weeks with his doctor but my little man is showing me what an awesome and amazing little man that he is. I was not going to share the details about him because I didn't want anyone putting a label on him but I decided that I would share to show everyone how amazing and what a fighter he is.