September 5, 2006

I just wanted to update the page and write a little more since some time has passed.  I know many people maybe emailed my story and check out this page and then there are some who are just receiving the news that there child has Trisomy 13 and are filled with questions. I know as soon as I found out Ivey had it I searched the web, and was thankful that I found this website, I received tons of support from so many who have been through the same thing.

If you are reading my story and your heart is breaking with the news that your child has Trisomy 13, please never give up on your child you never know what God will do, and you don't know how strong your little one will be, trust me doctors don't know everything!

I know I wasn't given any hope at first, and I was so upset, because this was my first child, she was my whole life, how could this be happening to me?  There were so many things I didn't understand, and it was so hard carrying my little girl and knowing that she may not make it. It was so sweet as I think back now every time I would get upset and start crying while I was pregnant she would always kick me, it was as if she was saying "hey mommy, I'm fine, why are you so upset?"  Oh how I miss those little kicks, if you are pregnant now cherish those times you have with your little one, it would always make me smile no matter how upset I was when she would kick me.  

If you are reading this because you heard about my story, or you know me and you just wanted to see my little girl, please know that I've felt your prayers, and yes this is hard for me and my husband and our whole family. But I will tell you this I wouldn't change a thing about it, if I knew I had to go through the whole thing again I wouldn't change it as long as I would have a minute to hold my beautiful little girl in my arms, and tell her how much I loved her, and to see the look on her Daddy's face the first time he laid eyes on her, nothing can ever replace that. Yes it hurts, yes it's hard, by far the hardest thing I have ever been through in my life, but she is my little girl and nothing will change that.   

We are still hurting a lot, and the time is slowly passing. I still remember everything like it was yesterday, and I will never forget my little Ivey Marie.  So if you are reading this and you have no hope please find hope and comfort in knowing, God is bigger than anything, and He's got things under control.

I don't understand why this had to happen and I probably won't ever understand, but I do know I am thankful for the time I had with my little girl, there was such a peace in my heart while I was holding her in my arms. The days are long, my arms are empty, and a piece of my heart is missing, but I will get it back someday. I guess my main reason for writing again is to update you on how we are doing and to give hope to those who feel there is none. Please anyone feel free to email me.
  
Thanks and God Bless You All,
  
Danielle  daniellemariequeen@yahoo.com
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Ivey Marie Queen was born on Friday July 14th, at 10:00 a.m. When she was born she was barely breathing and her heart rate was in the low 40s.  There were 5 pediatrician’s from the Children's Hospital in the delivery room.

As soon as she was born they laid her on my chest for just a moment, I was so afraid she didn't make a sound.  Then they took her a put her on oxygen, she didn't respond at all. They asked us what we wanted to do, and I said I just want to hold her.  After only a few minutes of being in my arms, she began to breathe well on her own and her heart rate came up to normal.

She was an angel, I've never seen a child more beautiful.  She had a few more of these spells and the last one she slipped right up in to heaven. Her Daddy and I got to hold her the whole time she was alive, they even brought the scale in the room to weigh her so she didn't have to leave us.  She cried when they unwrapped her and put her on the scale, but once she was in my arms she was fine.

She weighed 6lbs and 1.5 ounces and was 19 inches long. We tried feeding her but this caused her to stop breathing too.  I know she was telling us that she just wanted us to hold her.  Everyone at the hospital was so nice to us, they let us hold her as long as we wanted afterwards.  It's so hard to describe how I felt and still feel. But I know that God gave Daniel and I a peace about it, neither one of us wanted her to suffer so we just prayed for God's will.  Sitting here now I still feel how soft her skin was, and I can see all that beautiful dark hair, I don't understand why this had to happen, but I do know that I will love my little girl forever. Our little queen is in heaven now, and I can't wait to see her again.
   
Love,
Danielle Queen
   
   
  How very softly
  You tiptoed into my world
  Almost silently,
  Only for a moment you stayed
  But what an imprint
  Your footprints have left
  upon my heart.
   
  by: Dorothy Ferguson

submitted: 6-8-06

My name is Danielle Queen my husband is Daniel, we live in Alabama. I am currently 35 weeks pregnant and expecting a little girl named Ivey Marie.  She is very active, especially at night.

Ivey is our first child, we love her so much and pray that she will continue to be strong after she is born. Her due date is July 15th.  She has been diagnosed with trisomy 13 at 25 weeks, we had a level III ultrasound done which revealed a omphalacele, approximately 3 cm in diameter, and cleft lip/palete.  

During this ultrasound she wouldn't turn where the doctor could get a good view of her heart so we scheduled an appointment with a pediatric cardiologist. We got good news from him, he said her heart was strong and perfectly normal.

I am going to my doctors visits every week now and Ivey is continuing to grow normally and her heart is still strong.  Please pray for our little girl that she will continue to grow and that her delivery will go well.

Thanks and God Bless,
Daniel and Danielle Queen
  Danielle Queen daniellemariequeen@yahoo.com