Monday, September 27, 2010
Thursday, September 23, 2010
There is no foot so small that it
Alyce Clegg is apart of Now I Lay Me Down to Sleep
2011 Riverton Rd
We must accept finite disappointment,
—Martin Luther King Jr.
Wednesday, September 22, 2010
Friday, September 17, 2010
This was written by KarLee, yesterday 9-16-2010
(haven't changed anything....... its just beautiful)
In the beginning she was an it a mystery to be discovered. Boy, Girl who knew. As Colby called her billy bob as if she was a boy and I just waited paitently knowing that she was going to be a princess or again in colbys words a cowboy. Finally the day came I told my mom I was to be the first person she called I deserved to know that she deffinetly was going to be a little princess and colby deserved to know that it wasnt a cowboy maybe it could be a cowgirl princess but not cowboy. My mom called and as you see it was a little baby girl !!!!
Finally getting all the cute little out fits filling her dresser and closset. Getting out fits with flowers on the butt of the pants and cows on bibs they were so cute.
Then to find out that she had c-d-h it was different but ok we knew we would have are special little princess. We got her room done and all her little out fits. My mom also had so much heart burn and she told me thats supposed to meen lots of hear. Wich meant I could play with her hear when it got a little longer.
Then come to find out she had a brain problem then even more a heart problem and then come to find are little angel wasnt gong to make it why us why her what did we do to desserve it all this exsitment for a little baby sister I was finally going to be a big sister well I guess I still will be.
I'm very proud to be KarLee's mother.
Sunday, September 12, 2010
Wednesday, September 8, 2010
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births.
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.
At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
What causes Trisomy 18?
At conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with a set of 46 chromosomes in each cell. A trisomy occurs when a baby has three #18 chromosomes instead of the normal two. This is something that happens at conception. And although many parents worry about this, it is important to know that parents have done nothing before or during pregnancy to cause this disorder in their child.
There different types of Trisomy conditions. The most common trisomy is Trisomy 21, also known as Down syndrome, where a baby has three of the twenty-first chromosome.
Trisomy 18 is the second most common trisomy and occurs when a baby has three of the eighteenth chromosome. This results in 47 chromosomes instead of the normal 46 in the affected cells. It is this extra genetic material that causes the problems associated with Trisomy 18.
The third most common is Trisomy 13, also known as Patau syndrome.
Our baby girl has Full Trisomy 18:
The most common type of Trisomy 18 (occurring in about 95% of all cases) is full Trisomy. With full Trisomy, the extra chromosome occurs in every cell in the baby's body. This type of trisomy is not hereditary. It is not due to anything the parents did or did not do—either before or during pregnancy.
Typical characteristics of Trisomy 18 include:
VSD (Ventricular Septal Defect): a hole between the lower chambers
ASD (Atrial Septal Defect): a hole between the upper chambers
Coarctation of the aorta: a narrowing of the exit vessel from the heart
Part of the intestinal tract is outside the stomach (omphalocele)
The esophagus doesn’t connect to the stomach (esophageal artesia)
Excess amniotic fluid (polyhydramnios)
(Which I have had)
Pocket of fluid on the brain (choroid plexus cysts)
Rocker bottom feet
Small jaw (mycrognathia)
Small head (microcephaly)
Severe developmental delays
Umbilical or inguinal hernia 2 vessel umbilical cord
Give a Gift of Hope
Working together, your gift helps ensure that new families impacted by Trisomy 18 in 2010 will have the support they need and that more progress is made!
Your gift brings hope to families and their children coping with Trisomy 18 by investing in our efforts to fund research, build community and shape dialogue in the medical and research communities.
3 Ways to Give:
Trisomy 18 Foundation Mailing Address: OTHER WAYS TO DONATE:
Trisomy 18 Foundation Donate Online at www.trisomy18.org/donate
4491 Cheshire Station Plaza, Suite 157 or directly via the child's Legacy Page
Dale City, VA 22193 Phone: 810-867-4211 between 9 and 5 ET
Wednesday, September 1, 2010
On June 2nd, 2010 the doctor told us our baby had CDH. That next Tuesday, June 8th we traveled to Utah and and had a ultra sound that confirmed the CDH. We were told we needed to have a Amino and a MRI done. We were hopeful nothing else would be wrong. Some babies have surgery and survive the surgery.
With every morning, brought the realness of our baby's condition, we were consumed with it and the fact there was nothing we could do except wait.
We researched the Internet and found out everything that we could about CDH. We learned the severeness of these birth defect but also that it could be treated and our baby could survive to live a long, happy and full life.
On the 25th of June we arrived at St Mark's in Salt Lake for our appointment. First the doctor did the amino then we went for the MRI. As soon as the needle went in for the amino, Addison knew it and wasn't happy. Then we were taken to do the MRI, needless to say Addison was still very upset and did not quit moving and so after a hour and half, the tech came and told us it was one of the worst she had to do, since Addison wouldn't hold still. So we left not feeling so great with what had taken place and went home feeling anxious, but we still were hopeful.
We worried about anything and everything, and yes even worried about Downs Syndrome, but we are very blessed that God already has given my family, my sweet little cousin LUKE, and I knew my Aunt Kandy would be there to help with every question and worry that we would have. Ryan and I are very blessed with our families and friends, so our baby no matter what, would have (AND ALREADY DOES) have tons of love, and we could handle anything GOD was to present to us and we would together deal with it as best as we could. But hard to believe that I was just wishing "if only your child could have had a less serious chromosome disorder such as Trisomy 21, it would not be described as “lethal Trisomy”.
But we never expected to get this call......
Wednesday, June 30th, I got a call (I was at work) from a different Utah doctor (the boss of the doctor I had been seeing who was out of the office)He explained the results were conclusive and our baby had Trisomy 18 (Edwards’s syndrome). He then asked if I knew what that was, I said yes and after that I don't remember what all he said, I just know he just keep talking. Then he stop and said he was so sorry to have to be giving me this news and asked if I was ok. I said, I don't know. Honestly I didn't, all I knew was I needed my husband, and that was what I said was I need to talk to my husband. He said he would set up a meeting with the team of doctors, when would I like too? I said I had to talk to my husband.....
I had read about the associations with 2 vessel umbilical cord, and trisomy 18 was one I had read about. So I knew that it was not "Compatible with Life", that's how they put it.
I just sat there, not knowing what to do. Ryan was working in Swan Valley, and I didn't want to call him and have him have to drive home with this news.... I cried. I was all alone at work, thank goodness and just sat there and cried. Then I decided I had to leave. I did call Ryan.
Everything was really a blur from there.
I do thank God that each time we got "bad new" that my children were gone and that Ryan and I had time to breath, talk, and cry.
That night I googled Triosmy 18 and CDH and found a story about a little boy with both CDH and Trisomy 18. I read it. But for some reason I just didn't think a lot about it, this wasn't us, the doctors would never say anything like this????......
The next day I would be reminded of my ignorance. And that I didn't even tell Ryan about reading the story, not until the next day.
I got a call saying that we could just have the consult done at EIRMC so we didn't have to travel to Utah.
So I went and met with our new Idaho Falls Doctor, Dr. Leavitt, and told him about the consult and that the Utah doctors said he didn't need to come, but he said he would anyway. He told me that what ever they told me was just a commendation and We only needed to do what we waned, I really didn't understand what he meant, but I would soon....
So on Friday July 2nd we went to EIRMC .
We were not at all ready for the news we were about to receive.
Never in a million years would any parent believe what we were told next.
A different Utah doctor told us that there was nothing that could be done or would be done for our baby Addison, that she would die.
****Trisomy 18, is a condition which is caused by a chromosomal defect, its were the baby receives 3 - of the 18 chromosome. It occurs in about 1 out of every 3000 live births. With Trisomy 18 the extra chromosome occurs in every cell in the baby's body. And is lethal. And even if she was born alive that she would die soon afterwards as it is in every cell. There is risk she could arrive early and or be stillborn as many babies with T18 are. most of what I remember is that with Triosmy 18 its just not compatible with life, its lethal.
Then the doctor said we could deliver her now, if we wanted to.
Why did he say that?
We were so shocked, I really could not speak or breathe. I can't start to tell you very emotion that was consuming my body, heart and soul. I was mad, hurt,
Then I heard Ryan ask if we wanted to go full term if they would help with the surgery for the CDH, and then the doctor said no. What? We both were not believing what we were hearing.
We went home devastated and so confused.
How was this happening? How could doctors say these things?
So many questions:
So would we now just be delivering at our local hospital, with our OB?
Where do we go from here?
Who if anyone will help us?
One of the hardest things to know that doctor would write off your unborn child.
Questions after questions ran through our heads.
Is this necessary?
Is there a threat to my health?
I was so glad that Ryan asked all the right questions, I was just there. Numb, maybe? In total shock, yes I was.
Brokenhearted. Crushed in spirit.
Yes that was the best way to describe the state of my, OUR souls.
I know I have wondered if I will feel good, NORMAL, again.
My husband amazes me, he is my rock. We left and he drove us home safe.
We talked. We cried. We prayed. We talked more and cried so much more. Than I showed Ryan the story about the little boy.
The one thing that I read that we thought was really important was to we needed time to think and talk.
So we left town.
We drove and talked and drove and talked.
It was good. Good for us and our souls.
We did decided that we would be carrying full term, unless God had a different plan for us.
We scheduled a appointment with our "new" doctor, to see if he would still be our OB and if he would be help us to carry Addison to full term.
Wednesday July 7th was a "good day" for us. Dr. Leavitt was totally on board and schedule an appointment with the a Idaho Falls Neonatologist for the next day.
The compassion that we have received from our doctor and the neonatologist, gave us hope back. They will help us, they will help her. Addison may not live long but atleast now we might have a chance to met and love on our daughter.
It is this hope we needed to help us to get through each day. We also know with all the support and prayers of others, will help us, our family get through this.
I knew my baby’s life would never be like my other children. Now instead of planning baby showers and her homecoming, we were deciding where we wanted to bury our baby daughter.
And I would soon feel pressure to make such awful decisions in-case she arrived early as predicted.
Never before had it even occurred to me that anyone would have to ever carried their unborn child for months with such a heavy burden.
I even knew family members who had lost babies and still it had not registered with me that anyone could know so far in advance and go through months of anxious waiting and hoping.
I struggled so much that no-one could help. And we had to talk about that it would only cause her unnecessary suffering to artificially prolong her life by attaching her to machines.
Days went by and we started to just go through the motions.
Trying our best to act as normally as we could.
But we still wondered what is normal?
It was like everyone in the world was pregnant. But I was the only one whose baby was going to die. I wondered what I had done to upset God so much. We both did. We know that we didn't do anything.
I know that it is not a lot of fun to be with someone who is sad.
We have our good days and we have our bad days.
Right now there just has been a whole hell of alot of bad days.
Just going grocery shopping became difficult for me.
Right when my day seems NORMAL, the check out girl, or a person I haven't seen for ever, or the neighbor person, come up and start with the questions, just normal pregnant questions, but when you are not having a normal pregnancies, It JUST SUCKS to be asked all those happy normal questions.
Or when someone says "Oh your SO LUCKY to be having a girl! (I wont even try to explain how damn hard that WAS to hear and then to top that off I couldn't get away fast enough and lost my car keys......That day, I wont forget.) Please stop, I know she didn't mean any harm, I KNOW. But please realize it hurt, it hurt bad.
Lets face it leaving my damn house became hard on me. My sister tries to go with me, if Ryan can't. I don't think you can even begin to realize how hard it is. Just to leave our house and go into public, unless you have been in our shoes, my shoes.
My work has tried to help everyday. The check on me when I don't make it to work. They always try and make me laugh and bring my spirit up. Work for the most part is easy to go to, once I make it there.
The one thing that is hard to hear over and over again from people (Yes I also know that they are just trying to be helpful...) is:
Everything happens for a reason.
God has a plan.
It will all work out in the end.
Maybe it was for the better.
And please don't throw a bible verse at me.
(If you know me, really know me, you know.........)
And we do know that no one knows what to say.
We know that its hard, for everyone, not just us.
But please remember it is happening to US.
Just be there for us. Call and check on us. Just let us know that you are there if we need anything. You don't always have to say anything.
We do hurt, alot. It hurts me to watch my family hurt. My husband and both of my kids.
Life is hard. My life has been hard. I do know that in time, we will, all of us, will heal. We will, someday be ok.
WE DO want you ALL to know it is because of you, that we will all make it. Each and everyone that has came and helped in anyway. Called just to see how we are. All the food made for us. For those who have just listen. That loves on us. FOR ALL THE LOVE AND PRAYERS. We know God does love the brokenhearted. He is walking with us in this journey. He is the hope and the healing. No one know what the future will bring.
So embrace LIFE, now. Today. Tomorrow. Everyday.
And God gave us Addison because Ryan and I are strong and together we would get through this.
Last few months as we approached the birth of this our special daughter, have been very hard on us all. But at the same time such a blessing. As long as Addison was in me she was safe. I didn’t want her to be born, atleast not yet. Every day I carried Addison was a blessing. Every move and kick was a wonderful. So many people helped us through this journey. To us our baby girl was special and we all already loved her so much.
LIFE IS full of so many unexpected, life changing events.
Now all I am left with is wondering what will happen when she is born.
How long would we have with our baby girl.
I know this in God's hands.
So I will continue to pray and I know you all will too.