I am not sure if you remember me, but I am the one who went to frankie's baby shower and both my mom and I were expecting 2 weeks apart. Well, we had our babies and I wanted to share with you guys! We both had boys. I had mine on November 27th and my mom had hers on new years eve. They came a month apart even though they were due 2 weeks apart. My little guy is named Ethan and her little guy is named Riley. Ethan is healthy, but his uncle Riley has some problems, He has what is commonly known as Edwards syndrome, medically known as Trisomy 18. He is going to leave this earth soon. Most likely this weekend. 1 in 6000 babies get this syndrome...and he was the 1 that did. I really wanted to send you guys some pictures of the 2 of them together, and also I had a story that my dad wrote in the perspective of Riley and a little more about his condition so people understand,, but I can't see a place to attach it. so i copied and pasted the story. If there is an email or phone that I could send pictures to, Ill send them if you want to see them.
Here is the story.
Hello, My name is Riley Roy Stephens. It makes people happy when they say Riley Roy. Try it, you'll see what I am talking about.
“Riley” means “Valiant” It fits me well. At least I think so. My middle name comes from my great-uncle Roy Peterson. He is a wonderful man. You should meet him. My parents are Elden and Dolly Stephens. I was born on 12/31/2016. I weighed 5 lbs .02 oz. (I know what you are thinking: “He's pretty small for a 41 week old baby.”).
I have 9 (yes 9!) brothers and sisters. They were all born at home, naturally. (Yes, you read that right!) I was born at University Hospital in Salt Lake City, Utah. I am the only one born in a hospital and by C-Section. (That was really scary for my mom and dad, but the doctors and nurses are the best ever!)
When I was born, I was not as healthy as most babies are. I was born with a condition called Trisomy-18. We all have 23 chromosomes from mom and 23 chromosomes from dad. I am supposed to have 2 of each chromosome. Trisomy-18 means I have 3 of the #18 chromosome instead of 2.
Trisomy-18 is also known as Edwards Syndrome. 90% or more of babies born with Trisomy-18 don't ever reach their 1st birthday. That is sad, don't you think? I think it is.
Edwards Syndrome causes many health problems, my brain has a hard time communicating with the rest of my body because of issues with my central nervous system. Kind of like having a poor signal with your cell phone here in the NICU.
Here are many of my health problems:
My heart has a hole in it. The hole is on the inside of my heart between the two ventricles. This makes my heart have to pump really hard to get the blood to the rest of my body and puts a lot of pressure on my heart. It's called pulmonary hypertension. Doctors use big words like that because they like to pretend they are from another planet. They are just regular people though, I should know, a lot of them have talked to me.
My heart is larger than usual. It is pushing against my lungs. This makes it hard for my lungs to give the right amount of oxygen to my blood.
There is a valve on an artery that keeps the blood with oxygen from mixing with blood without oxygen. This valve closes when a baby is born and breathes on it's own. My valve did not close and so all my blood mixes together. This also makes my heart work harder to get enough oxygen to my body.
I have to be hooked up to a machine called a ventilator to give me extra support when I am not breathing deep enough to give the right amount of oxygen in by blood. I am sure glad someone invented that thing, I'll have you know.
I also have a big head compared to most babies my size. This is because my skull did not form correctly. I have a extra big soft spot on my head and my head is shaped funny in the back and top. Because of the problems with my head and brain, I will never be able to learn to sit up or talk or walk or do anything regular babies learn to do (but that's okay, those things are waaaay overrated).
My hips did not form right and are dislocated, which means they are not in their socket.
My ribs are very thin and can break very easy. I also have ribs like Adam in the Bible. I am missing one of them. #evemadefromadamsrib ;)
There are also problems with my reproductive system.
These are the most serious problems and they are very severe problems. Most babies with these severe of problems only live a few days or a few weeks.
Other health problems that are not as severe that are caused by Edwards Syndrome can be seen just by looking at me:
I have very poor muscle tone, so I have to have help to move. I can barely move my arms and legs. I can move my eyes to look around. Bright lights are annoying to me like everyone else.
My hands are crooked. My pointer fingers are bent and I cannot straighten them. My thumbs and pinkys overlap the other fingers. I can't open my fingers but if you put your finger in my hand, I will squeeze it.
My 2nd and 3rd toes on both feet are hooked together like webbed feet on a frog. I would probably make great swimmer, don't you think? I call them my Spiderman toes.
My ears are a little pointed like elves ears. I was actually due to be born around Christmas so I may or may not know Santa on a personal level.
I also have very sensitive skin. Wearing clothes is very annoying and I don't wear them at all, I only wear a diaper. I stay warm by having a heater above me in my bed, like the broil setting in an oven.
Other things about me:
Because I have sensitive skin, I don't like to be rubbed or stroked. It feels like sandpaper to me.
I love to be held by Mom and Dad. I am a few feet away from my heater so I get wrapped in the softest blanket the hospital has. It is very stressful to move so only Mom and Dad can hold me at certain times.
I also love to be touched. You can hold my hand and put your hand on my head or tummy. Just don't rub.
Moving around is very painful and stressful and I don't like to do it. You have to be very careful, even just to change my diaper.
I have many tubes and wires hooked up to me. They keep track of all of the stuff the doctors and nurses need to know about me to help me be as safe and comfortable as possible. One of the tubes is for feeding. I can drink my mom's milk. It is soooooooo delicious and healthy for me.
Because I have tubes in my mouth and down my throat, I cannot make any noise, even when I hiccup. When I cry, it looks like I am crying but there is no sound. It's kind of weird to see me cry with no sound. But that's just how it goes for me.
Some of the tubes are to give me medicines to help me live and make my pain a little less. This helps me sleep better. Most newborns sleep a lot anyway though. I can wake up even with the medication. My parents get up in the middle of the night to see me awake because that's when I wake up the most. That seems a little mean don't you think . . . . . . . MUAHAHAHAHA. #justkiddingmomanddad
This is me about an hour after I was born: (this is where a picture of riley would be)
And later when I was not feeling very good and was silent-crying. I made that word up, do you like it? This picture is as good as a video. They sound the same:
(this is where a pic of riley would be)
I am looking forward to going back to Heaven to be with Heavenly Father and Jesus and my relatives that are there. I don't think it will be much longer and I don't think I will be leaving the hospital.
I will miss Nurse Jane and Nurse Jen. They watch over me and take care of me night and day. I am thankful for all the doctors and nurses that helped me and my family and I will miss them too.
I will mostly miss my mom and dad and brothers and sisters. I don't want them to worry about me though, because in Heaven I will be able to sit up and walk and talk (those things are waaaay underrated). I will always be with them, anyway.
It was nice to meet you and I hope this helps you understand about me and my condition called Trisomy-18.
I love you all,
Riley