Rylie's Birth Story

I thought I would kick off 31 for 21 by reposting Rylie's birth story. If you have time to read through all seven parts you will see that I was beyond shocked and filled with grief during the early days of Rylie's life. I knew absolutely nothing about Down syndrome and I had never met anyone with Ds or even anyone who had a family member with Ds. I wasn't provided any good information from doctors, and at that time there weren't any blogs about Ds. I think reading the stories of REAL families living with Ds is a great way to get real and true information. I think the biggest mistake I made after receiving Rylie's diagnosis was not getting support. I should have hooked up with other parents instead of trying to do it alone. I hope my blog will always help bring awareness to Down syndrome and hopefully encourage and help new and expectant parents.

Click below to read all about Rylie's birth story, parts 1 through 7.
Birth story part 1
part 2
part 3
part 4
part 5
part 6
part 7

The rest of the story Part 7

Well we spent 14 days in the Nicu before they let us take Rylie home. The cardiologist said she had a opening in one of the chambers of her heart, but he thought it would close on its own, and it did. She had a few follow ups with the cardiologist and an echo then she was in the clear. She past her hearing test at the hospital, but later failed it. She eventually had ear tubes put in and that did the trick. She was also diagnosed w/ an eye problem(THIS IS SUCH A LONG STORY IT DESERVES ITS OWN POST. LETS JUST SAY A MIRACLE OCCURRED, AND SO FAR TO DATE RYLIE'S EYESIGHT HAS BEEN PERFECT). She also had sleep apnea. We had to learn infant CPR and she was brought home on a monitor.(grrr I hated that thing to no end!)

One thing that really made me sad was that Karlie was not allowed to go into the Nicu. No children under 12 years old! I begged the nurses and doctors everyday, but these were the rules and it broke my heart. On the day Rylie was discharged, we left the hospital and drove right to Karlie's preschool. Oh, the joy of finally seeing her hold her sister.

Early intervention started at home right away and there were tons of doctors appointments that first year.

If you are a family member, friend or blog friend then you already know how much we love Rylie. She has brought so much JOY into our lives. The sadness we felt in the early days of Rylie's life have disappeared. No, It is not easy raising a child with Down syndrome. We have had our struggles and especially now that she is school age there will be a lot of challenges. But we have gotten this far and I am excited to see what the future holds for Rylie.

Finding out for sure Part 6

I was really holding out hope that Rylie didn't have Down syndrome. Vince and me just didn't see it. I am amazed when I hear other parents say they looked at their child for the first time and just knew. I couldn't see any of the characteristics. We look back at her newborn pictures now and laugh, because we must have really been in denial.



So, it was now Thursday, three days after Rylie was born. I was leaning over Rylie's bed, talking and playing with her, when I was approached by the Nicu doctor( I have no I idea what his title was officially). He said, "Mrs. Volz, the genetic counselor is here to talk with you". No, No, No is what I cried out. Does she have Down syndrome, Is that why she wants to talk to me? He said, yes, and then started to explain something, but I ran away from him to find Vince ,who was outside in the hallway. I found him and just started crying, and saying she has it , she has it!



The genetic counselor found us out in the hallway and took us in to a private room. She had a very "cold" personality. She had papers w/ pictures of chromosomes on them ,and was trying to explain things to us. I kept asking her , what is Rylie going to be like. Will she walk, talk etc. She gave me the I don't have a crystal ball speech and went on her way. She couldn't say one positive thing to me. Where was the book Gifts back then?

I was devastated. I did not take this news well. They were still checking her eyes, ears, heart and a million other things, but now I didn't care. I felt like now Rylie has Down syndrome, and that can't be fixed, so who cares about anything else, just fix whatever you can and let me take her home and somehow deal with this. I know that sounds awful, but that was how I felt. I was in complete shock. I couldn't believe this was real but, during this time I constantly prayed and people were praying for us. And I did feel God's presence, but I felt so cheated. Many parents describe finding out a diagnosis of Down syndrome as being like the loss of the baby they thought they had, and having to go through a grieving and mourning process, and I have to agree. I knew I loved Rylie, and this is why it hurt so much. I felt bad for her. I didn't think this was fair for her.

So if it wasn't Hirshsprungs, What was it? Part 5

It was Anal Stenosis. Anal stenosis is the narrowing of the anal opening, making it very hard for the baby to pass stool. Instead of any type of surgery Vince and I had the pleasure of fixing this ourselves. We literally had to insert a metal dilator into her anal opening twice a day for months.(sorry if this is too TMI). We were told this protocol may not work and she still might require surgery in the future. Thankfully, it did work and she never needed surgery. The doctor told us that Rylie would still have to deal with constipation for the rest of her life. Well, she dealt with constipation for about 6 or 7 months and has never been constipated again. She is very regular and potty trained( except a night time).

I'll continue about the rest of the NICU stay in my next post.

Birth story part 4

So because Hirshsprungs disease was suspected, we met with the GI surgeon. He explained what Hirshsprungs was and told us Rylie would need surgery in two days, but before surgery they would do a biopsy to confirm. The surgeon kept saying" these kids "this and ""these kids "that referring to Down syndrome. All I could think of was, how did the baby that I carried for 9 months, who's ultrasounds were always perfect become one of "these kids".So. I signed all the consent forms for surgery.

The next day as soon as I walked in to the nursery, I was greeted by a smiling surgeon. He's said, good news mom-Rylie does not have Hirschsprungs. Praise God!!! It was a miracle! The surgeon said he couldn't believe it. According to her x-rays it looked like Hirschsprungs, but according to the biopsy it was not. So, no surgery for Rylie. As happy as I was that my little baby would not be getting surgery, I just wanted to know if she had Down syndrome. We were still waiting for the blood work.

We had a lot of support from family and friends. I didn't have a computer or Internet back then so, Alot of people were doing Down syndrome research for me. I was not to happy with what I was finding out. All I did was cry and pray, but I was loving my baby. Even though she was hooked up to a million wires I was still able to hold her all the time. I was amazed at how BEAUTIFUL she was. I just wanted to bring her home so bad. I hated the NICU. I was thankful that she was in the hands of good doctors and nurses, but I felt like they owned her and they wouldn't give her to me to take home. She still needed to be seen by the cardiologist any many more doctors. She needed a hearing test, eye test, and MRI. She was also being treated for Jaundice.

Birth Story Part 3

So on with the story-

It was believed that Rylie had Hirschprungs disease, so they wanted to transfer her to St Chris's Children's Hospital. She was taken there by ambulance. My obstetrician discharged me so we were able to get to St Chris's to be with Rylie She was already admitted and hooked up to all kinds of machines when Vince and I got there. I was about to hear everything the doctors thought might be wrong. Rylie was about to be put through all kinds of test and possibly surgery, but I only had two questions-I wanted to know if she had Down syndrome and when was I going to be able to take her home.

Birth Story Part 2

Rylie had just been born. They gave her to me, I looked at her and the first thing I said was, Oh wow, she looks just like Karlie. I wasn't even holding her for 15 seconds until they took her from me and put her on the scale to weigh her and clean her up. Vince said to me-she is so cute, she keeps sticking out her tongue. I thought ,that's cute. Then the doctor picked her up and said, she's beautiful, but I wanted to show you that some of her toes are webbed.. My heart sank. How in the world did that happen. But I figured that was something that could be fixed. Then the doctor said, she is having a little bit of trouble breathing and they were going to take her to the nursery. And that quick they took her away. Vince stayed with me for a while and then went to the nursery to check on Rylie. She was in a warmer and the nurses said she was doing fine. He told them he was going to go home for a little while and get some rest while I slept. He asked the nurses, if he should stay. He didn't want to leave if everything wasn't Ok, but the nurses kept assuring himthat Rylie was fine. So he went home. Meanwhile I could not sleep. I asked a nurse to take me to see my baby. When I arrived in the nursery, I was able to hold her. I was telling all the nurse how she looked just like Karlie. I enjoyed holding her for a while then went back to my room. I really needed to sleep, I had been up for 24 hours or more.





It was 9:00 in the morning and I was half asleep. Rylie's pediatrician walked into the room and sat down.(I recently read somewhere that when a doctor sits down that is not a good sign). Here is how our conversation went.(keep in mind I am all by myself).





Me: How is her breathing? Is it because of the epidural? Is she Ok?





Doc: Her breathing is fine. blah blah blah(can't remember now)





Me: What about her toes? Will is this effect her walking(I'm already worried about her walking)





Doc: We will have to wait and see. She could have surgery to separate them. It all depends on the bones, listen I think your daughter has Down syndrome. We are doing a blood test to make sure.





Me(jumping out of the bed, immediately pacing the floor):WHAT?????I just saw her. She looks fine.





Doc: blah, blah, blah, Muscle tone, blah, blah, blah, features, blah, blah, blah chromosomes............





Then the doctor quickly explained that it was nothing I did and then he just left.





I immediately called Vince, but he was sleeping. I kept calling and calling until he finally answered the phone. I screamed something like, they think she has Down syndrome , get here NOW!!!!





I don't think the way the pediatrician told me this news was right, especially since I was all by myself, but I sure didn't deliver the news to my husband that well, but can you blame me?





Then I called my mom, and gave her the news the same way.





I just started crying and continued crying for almost two weeks.





The next day, Rylie was transferred to the children's hospital.





To be continued................................................

5 years ago today

Rylie was born. It was around 1:00 in the morning when my water broke. I wasn't having any labor pain yet, but was told by the doctor to get to the hospital. It was three weeks before my due date, so I was happy to be getting out of being pregnant early. Since I wasn't in pain, we weren't in a big rush. We woke up Karlie and packed a bag to go to Mom-Mom's. We told her that tomorrow she would get to meet her new baby brother or sister. Karlie was so excited about the new baby. She had a special gift for her or him,(stuff hippos, aka Hippies). So we dropped off Karlie at my moms and enjoyed our ride to the hospital. It was snowing that evening. We were so excited, talking and laughing and getting ready to meet this baby!

Since my water had broken, I needed to be induced. The doctor and nurses talked me in to getting an epidural. Since I got the epidural right away, Labor was pretty uneventful. After some pitocin, an epidural, some contractions and three pushes Rylie was born. Yay, another girl. We were thrilled!

Now today is a happy day, so if I start writing about all the hell that broke loose after Rylies arrival into the world, I might get sad, so stay tuned for part 2,3 and maybe even 4. Hopefully I will let you know the rest of the story by the end of this week.

Rylie-Daddy and me are so proud of you. You have grown into a beautiful 5 year old. What comes naturally for most children, you had to work so hard, learning to eat, walk, talk etc. You are a hard worker. You fill our lives with laughter. Nobody has ever made me laugh harder then you. Happy Birthday-Love you!!!!!