Where to start? As I approached the end of my pregnancy the doctor had me going in for non-stress test. I was having high blood pressure and swelling a lot. He ended up putting me on bedrest the last few days right before the Jaxson was born because as long as I was off of my feet I was not swelling and my blood pressure seemed to stay down too. The weekend before Jaxson was born I had several stress test. Friday afternoon I went to my doctors office and had the stress test, while there Jaxsons heartbeat dropped down so they had me go over to the hospital. While at the hospital everything was fine. Jaxson was moving all over the place, in fact they had a hard time keeping him on the monitor because he kept moving away. It made me laugh. Things seemed to be okay so they sent me away, but told me to come back the next day and be checked again.
So Saturday I went in again, and while there Jaxsons heartbeat did the same thing. So this time to make sure things were really okay, they sent me to get an ultrasound. This time while in there, Jaxson decided to not move so then they were really worried about that. But then what they didn't tell us was that they noticed some abnomalities. At the time we didn't really know what that meant and they weren't telling us because they needed to read the ultrasound first. They sent us home without knowing anything, but something wasn't quite right, and told us to come back the next day for another test. So then we went back on Sunday for the test again, oh my goodness so much fun. This time while they were doing the test Jaxson cooperated. He moved enough that we were able to be in and out. But while there I made sure to ask about the abnormalities and see what they thought was going on. They had the on-call doctor call us and let us know that they thought that Jaxson might have DOWNS. To me that was not a big deal. Yes it changes things a little bit as far as how we were going to take care of him, but we would manage it. We finished the test and then they told us to go see a perinatologist.
I wasn't able to get in with the perinatologist until Tuesday. So I had to wait all Monday just sitting at home to find out what was going on. On Tuesday we went to see the specialist and she saw the same abnomalities. She said that yes it could mean he had DOWNS or it could mean that he had some kind of other things going on. Then she also said that if my own doctor wasn't going to take the baby that she wanted him to come out. He looked like he was doing okay enough that taking him shouldn't hurt. He was far enough along that he should be okay. She called my doctor and talked with him, had me do another non-stress test. Then sent me to the hospital to my doctor to be delivered.
My husband and I drove to American Fork hospital, not sure of what to think. Jaxson was coming 4 weeks early, and that scared me because I had my dear sweet niece born that early and she was tiny and had a bunch of compliations. I wanted my baby to be okay and I wanted him to be healthy and I wanted him to be able to come home with me and not have to stay in the hospital for any time. We called my parents as we went and told them what was going on. My mom made sure to call my brother and let them all know, and even asked them to come and give me a blessing to help make sure things would be okay. It was so neat, I had all 6 of my brother, my dad and husband all give me a blessing. I was really neat.
The doctor came in checked to see how dialated I was, surprisingly I was at a 3. He broke my water and we were going to try a normal delivery. I was so nervous, this is the part that I had tried so hard not to think about. Feeling the contractions and having them get closer and closer, and more intense. I finally asked them to give me an epidural. While they were giving it to me the little stinkers heartbeat dropped down again, so the doctor decided that Jaxson couldn't handle a normal delivery and that he would have to do a c-section.
Oh no this made me nervous again. I didn't want to have to be cut open, but I guess that meant that I would be able to see my baby eariler. They had to stop my contractions and wait for me to get numb. They wheeled me in and stripped me down, gave me more of the numbing stuff then cut me open. I honetly don't think they gave me enough, but I was to stubborn to get more of the medication and just wanted it to be over. I wanted to see my baby. They pulled him out and my husband went of to be with him. I waited to hear how he was and that everything was okay.
They quickly found out that he didn't have a soft pallet. They didn't say anything about what other problems that he might have. They finished sewing me up and took me to the recovery room. I waited to hear how things were. I saw my mom and dad, and John came back. They all said that he looked beautifiul and that he was perfect. He did have extra digets on his hands. He has 6 fingers on each hand, we were able to see that.
The pediatrician came to me and let me know that he was having breathing issues due to him not having a fully formed pallet, his tongue kept droppin back, and his jaw wasn't totally formed either. They suggested that he go to primary childrens hospital, because the last baby that they had with the pallet issues he ended up crashing and having to be taken up there air transport. Since he was doing okay and he wasn't having to many issues they wanted to take him up there on a more calm pace rather then have to do it later on an emergency basis. They wheeled me down to see him and hold him. I got a few minutes with him, and a picture or two. John held him too, and then they took me to my room. They brought him in and let me see him before he was taken up to primaries. This was in the middle of the night around 2 am. He was born at 10:11 pm on the 12/18/12.
I didn't get much sleep after that, I was so overwhelmed by everything that had happened. I had my baby, but then he was taken away. I was still so confused. The next day, John went up to see the baby and see how he was doing. He got some pictures of Jaxson and even got to change a diaper. They still didn't tell us anything about Jaxson. As far as we knew he was perfect. We thought that the only thing that was wrong was the pallet, they had told us though that they were running more test.
I don't want to make this too long, so I'll try to share what seems to be important.
I went home from the hospital on Friday. I really wanted to go and see my baby, but didn't get to go and see him till the next day. We went up and I loved that I was able to see him finally. He seemed so perfect to me. So beautiful, tiny and presious. Saturday they let us know that he was having more issues. His breathing had gotten worse, and he was having problems with his gluclose levels. The poor thing was having to be poked every 2 hrs to make sure they weren't too high. Later that day they let us know that Jaxson had Trisomy 13. It is a chromosomal disorder that is similar to DOWNS but it is a lot more serious. They shared with us that his chances of living were not good.
I broke down, my little baby wasn't going to be here with us on this earth very long. I hated hearing that. I just got him, how can he be taken away so quick. I cried and cried as the doctors talked more about what was going on and all the things that come with his disorder. We could have done surgeries to fix his breathing, but the recoveries would have been long and lengthy, and we still don't know if he would have survived them. After we talked with the doctors, we went back in to see Jaxson said good bye. We went home to my family who was having a christmas party. We had planned not to share with them what was going to happen. But I just couldn't keep it in, everyone kept asking how he was and if we knew anymore on what was going on with him. I finally broke down and shared with them everything that the doctors had just shared with us.
Sunday we were able to give him his name and blessing. That was really neat once agian we were to have all 6 of my brothers, dad and husband there. It was so good to have them all have the priesthood and bless this little body. The doctors informed us of a few more problems that were going on with his body. It helped us to know that our decision to not move ahead and do surgry was correct. It still was super hard knowing that he wasn't going to be with us much longer.
We drove up Monday spent some more time with him. Then on Tuesday, which happened to be Christmas, all of my siblings decided to come up and visit Jaxson. Each family was able to come and get pictures with him. John and I spent more time with him too. Then we went back down to Orem and had dinner with my family.
The next day John and I drove back up, this was the day that we had decided to take him off of all the machines. Knowing that our little one was not going to be around much longer made this day really hard. I as able to hold him as they took him off the of the ventilator. For the next few hours John and I kept passing him back and forth, loving holding our angel baby. About 3 hours after being pulled off of the machines our sweet angel baby passed, and returned home to our Heavenly Father. Not a day goes by where I don't hurt for him. Where I don't wish that he was here, and that I was able to hold him and kiss him. My heart aches for him. I know that he is in a better place and that now his imperfect body, is now perfect. I know that he has a much more important mission ahead of him. I am sure that some day I will know what his mission was for down here, and I am sure that I will have learned this big important thing. I just hope that whatever is going on with him that some day I hear of it and be so greatful that I was able to mother him. I do hope that I can find joy in this trial that Heavenly Father sent to me.
