Thank you for being here. If you are here that means that you want to hear our story. I decided to start this blog because I wanted to get Rylan's story out there. I want to honor him and I feel that telling his life story would be a good way to do that.
So, let me start you off by telling you about my family. I am Jodie. My husband is Tate. He is an amazing, kind and spiritual husband and father who I am very lucky to have. We have been married for 5 years this passed July. We have a four year old boy, Braidyn, a 3 year old son, Landyn, and Tate has a 9 year old son, my step-son, Cory. They are amazing and wonderful kids. We thank God every day for letting us have each and every one of them. We also have a beautiful little boy, Rylan Brett, who went to live in heaven on June 4, 2008. He had autosomal recessive polycystic kidney disease. We were lucky enough to have gotten to know Rylan in the short time that we did. Our beautiful little angel is what this story is all about.
We had gotten up that beautiful Saturday morning in May of 2008 all excited because we were going to get see what our little Rylan looked like. We were getting a 3-D ultrasound at 29 weeks, that a friend of ours from church was performing "for fun". We had never had a 3-D sonogram before. I had seen other peoples' pictures of them and it was amazing how well you could see the baby's little features. I was so incredibly excited!
We had no big problems with our previous pregnancies. I had some kidney stones and gall bladder sludge but that was about it. Nothing too bad actually. I loved being pregnant and was having a wonderful pregnancy again with Rylan. That is why we were so shocked when he told us that something didn't look right. Our friend was incredibly kind and caring and told us that if it were him he would go to the hospital as soon as possible. He said that there was almost no amniotic fluid and Rylan's kidneys looked very enlarged. We couldn't believe we were hearing this. It didn't seem right. Rylan was so active and he was kicking and moving around as he told us this horribly scary news.
We went straight to the hospital and I cried the entire way there. We still didn't have any definite answers but this was supposed to be a wonderful day and it had taken a turn that was so unexpected. When we got to the hospital they said that I needed to have a level 2 sonogram. We had to wait for the specialist to come in and he didn't get there til that evening. It felt like the longest few hours in history. I really think time was standing still. He performed the sonogram and said that it looked really bad. He confirmed that there was almost no amniotic fluid and didn't see a bladder which meant that the kidneys weren't functioning at all. He wanted me to stay in the hospital and perform another level 2 sonogram on Monday morning. So that is what I did. Everyone was so helpful and loving. We had a very special nurse who was one of the best nurses I have ever encountered. Her name was Becky. She was so accommodating and helpful. She went out of her way to make sure we were as comfortable as possible. I want to thank her for everything she did.
The hours that we had to wait for Monday morning to come were surreal. It felt like a bad dream that I would wake up from any minute. Unfortunately, I just wasn't waking up. I did, however, find a way to go into denial for a little while. I just kept saying, "he will be ok, he has to be." I knew in my heart that this would be true no matter what the sonogram told us.
The dr. came in to get us early Monday morning and I think my heart stopped for a second. He did the sonogram and gave us the worst news I had ever heard. He said there was even less amniotic fluid and no bladder. I just burst into tears. Rylan's kidneys were shiny white and the size of a young boy's kidneys, not an infant's. The shiny white meant that his kidneys were completely full of cysts. It wasn't even like swiss cheese with any space between the cysts. He told us that he didn't think the baby would survive. He wanted us to get an MRI though to see even more details of what was happening.
So we went home from the hospital. The next day was my 34th birthday. I hope I never have a birthday like that again! I hope no one does. I tried to make the best of it though. My woderful mother took us out to a nice dinner. We did get to celebrate it with Rylan and I liked that.
We had to wait a week for the MRI and that again, felt like an eternity. We still had some hope though. No one would give us definite answers yet and we held onto that hope with all we had.
During that week my regular doctor performed another sonogram and he said that without knowing this was going on he might have missed it because Rylan's kidneys filled the ultrasound screen and he wouldn't have been able to tell that those were the kidneys that he was looking at.
Rylan seemed so healthy and active to me. It absolutely broke our hearts when, at the MRI, she told us Rylan would not survive. She told us that there was a threat to my health the more time we waited to deliver because Rylan's abdoman was going to continue to grow larger. The dangers would arise from delivering the enlarged abdoman. She told us that his lungs stopped developing weeks ago and they wouldn't work. She also informed us that he had no bladder and there was no kidney function or amniotic fluid at all. She also told us that Rylan could roll over on the umbilical cord at any time and he would die all alone in there.
We discussed things with our doctor and decided to deliver Rylan then. We wanted him to have the best life experience we could give to him. I wanted and needed him to be with us alive before he went to heaven. I couldn't bear the thought of him passing away all alone in my uterus. I wanted to be able to hold him and love him and kiss him before I let him go. We wanted him to feel all of the love from us that he could before we gave him back to Jesus.
We went to the hospital for the induction and sat in a hospital room for hours. I got in a gown and in my hospital bed where I sat for hours. None of the nurses would come in to see us. Finally hours later the phone rang in my hospital room and it was my doctor. He told us that he had some bad news. He said that none of the nurses would participate in the procedure and that he was coming down to see us immediately. For some reason the nurses felt it was an abortion. This news appalled me! I had never once considered to be anything but the best decision for all of us and most importantly, Rylan. We were told there could be danger to me and the nurses didn't feel that my life was worth it I suppose. They said that I was fine. I'm not sure how they came to that conclusion because not one of them came to see me or even talk to me. They knew nothing about what was happening in our situation. I cried in our hospital room while our dr. kindly came to sooth us. He was appalled by the nurses decision as well but in TX there was nothing he could do. The head of the nurses came to talk to us and she was kind as well. She couldn't make anyone do anything and said that if she were a practicing nurse she would've participated without heistation after hearing our story. Unfortunately she couldn't though. We were sent home at 11 pm in worse condition than when we came in. We had no idea what to do from there.
Our dr. called us the next day and had found a dr. at another hospital that would see us. I went in for an ultrasound and he also told me that Rylan's condition was not compatible with life. He said that his lungs stopped developing at 23 weeks and that his heart was overgrown to fill the space where the lungs should've been. He also said that Rylan's liver would be affected as well. He was one of the most kind and amazing doctors I have ever been to. I was scared to have to deliver in a strange hospital with a strange dr. in a horribly scary situation. Luckily though he turned out to be more than I could've asked for in a dr.
When I was 32 weeks along we went into the new hospital to deliver. It turned out to be the most wonderful awful experience I have ever encountered. It was incredibly spiritual and the presence of god was with us the entire time.
I forgot to mention that as for the nurses saying I was fine, they were wrong. After I delivered Rylan, the placenta ruptured. It basically broke into a bunch of pieces and I started to lose a lot of blood. The dr. had to dig around for a while to get out each piece. A few minutes longer and I would've had to go into surgery but luckily he saved me from that. It did get pretty scary though. This all happened due to Rylan's condition. Because of it the umbilical cord was not centered on the placenta like it usually is. It could've been much worse. We were lucky in that regard.
My husband and I were blessed with holding this beautiful little life in our arms for 51 minutes until he passed away. He was perfect in every way. He was one of the most beautiful babies I have ever seen. We kept him with us for 7 hours that night. Letting him go was the hardest thing I have ever had to do. I don't wish that on anyone and can definitely relate to those who have had a similar unfortunate experience. It does help to know that he is in heaven waiting for us and Jesus is taking better care of him than we ever could.
Rylan Brett Rubley Memorial Fund
