February 12, 2007

That is a day I will never forget. It was the day we found out our baby had many medical problems. I was 21 weeks along in the pregnancy and so excited to get our ultrasound. I didn't have any fear, just pure joy. Joy, because that was the day we were going to see our little angel for the second time and hopefully find out if we were expecting a little boy or a little girl. Carless and I had plans to go shopping for our baby's crib, clothes, and anything else that struck our fancy. Just typing the words makes me remember how excited I felt and how happy we were. My doctor sent me to a specialist for a blood disorder I have. I was not the least bit worried about the blood disorder, I just knew Carless didn't have it. I mean really, "What are the odds? Right?". But we went along with doctor's orders and did the whole genetic counseling and let Dr. Fraser look at our baby.

The nurse doing the scan that day was very quiet. It made me so uncomfortable. I remember Caelyn wasn't moving, but her heart was beating. This was my first pregnancy, so I didn't realize how unusual this was. That's why I hadn't been able to feel the much anticipated movement most mom's enjoy. I nervously asked the nurse if it was common for babies to not move, she dryly answered "no". I also remember her muttering something about how small she was. My mom and Carless were both with me in the room and we all came to our baby's defense, "well, we were small babies" and "I've been really sick" and "my dad only weighed like 4lbs at full term". She didn't seem to care, she said those things don't matter and she quickly left the room to get the doctor. My mom encouraged me that everything was going to be alright and nothing was wrong with our baby.


When Dr. Fraser finally came in, the genetic counselor, Robin, followed with a pin and pad of paper in hand. I knew immediately that something was wrong, because Robin had already seen us and we were supposed the be "done" with that part of the visit. Dr. Fraser scanned my belly and said some things to Robin. He asked two things, if I had had a hard pregnancy and if I can remember any liquid discharge. I did have a hard pregnany, but no fluid that I could remember leaking out. Then he said the words I didn't want to believe, but will remember forever, "There are a couple things. Your baby is about 2 weeks too small, you have very low fluid, and it appears like your baby has a heart defect called endocardial cushion defect." My head was spinning. No, the room was spinning. Maybe it was both. I could barely contain my composer as I sat there while he explained what it all ment to our baby. I wanted to be brave, so I tried to hold in the tears, but they came. We left the hospital that day with tear streaming out, not sure what to do or where to turn. I just wanted Dr. Fraser to tell me its not as bad as he made it sound, that our baby would survive and everything would be okay.

Everything would not be okay. We continued with the pregnancy, learning more devastating news every time we visited Dr. Fraser. He didn't know what was causing our baby to have multiple problems, but he did know that without fluid our baby would not survive. The lungs cannot develop without fluid, so our baby wasn't expected to live after birth. Dr. Fraser then sent us to another doctor, one who would deliver our little baby. We would continue to see this new doctor until the birth. Dr. Burk was his name. He was very nice and understanding of our situation. He promised to be at the delivery room with us no matter what. That was relieving. Everything was so scary and unknown, it was good to know our doctor would be there, one that knew what to expect.

Bella

So, after Bella went to Heaven and my dreams were once again ripped from me, I closed myself off from everybody. I didn't return any phone calls or emails. I just closed down for a while. I couldn't face it yet. I needed time. I finally emailed everyone to tell them that we found out that we had a little girl and we would pick out a name soon. My sister then reached out to me and sent me a message that I would like to share....

You know how I've always been the 'doubting Thomas' and I'm trying so hard to have faith. It's been like a roller coaster lately for me thinking about what you've been going through. Yesterday I watched this little video in my first life group meeting. It made me think of you and it kind of reminded me of the poem "footsteps". It was a guy walking and talking to the camera about taking a walk one day through the woods on a clear sunny day with his toddler on one of those back carrier things. He was talking about how beautiful it was and then the wind picked up and clouds came rolling in and they were a few miles away from home. It began thundering and lightning and the little boy started whimpering. The dad had a hood on and he thought that the boy had a hood on but he had thrown it off(it's ok not a sad ending) and it started raining. The kind of rain that is really hard and just plasters your hair to your head. By now the little boy is just screaming and crying and the dad is trying to hurry. The dad said that his son only knows how afraid he is of the loud thunder and the cold hard rain, he doesn't realize how his dad would do anything to help him so he's not afraid. The dad finally stops and takes him off his back and holds the boy close to his chest and wraps him in his jacket and whispers in his ear the entire rest of the way..I love you..I've got you..it's ok..we're gonna make it. over and over. The video goes back to the dad walking and following the camera and telling the story and he says "what if some day in the future my son has repressed memories of that day and comes to me and asks 'why did you put me through that pain?' If he asks me this it would kill me because that is one of my best memories that I've ever had between me and my son." So it's like he is representing God and the child is us. We may go through really really hard times and wonder why God allowed it but all along he was there holding us in his arms and whispering in our ear..I love you...I've got you..it's ok..we're gonna make it..I love you..it's ok..over and over. So he's got you and Carless and Caelyn and this new little girl in his arms and he's whispering in your ears over and over. I don't know what you think about this but it sort of helped me to understand a little better, it's just all been confusing for me. I love you.

A Pair of Shoes

I am wearing a pair of shoes.

They are ugly shoes.

Uncomfortable shoes.

I hate my shoes.

Each day I wear them, and each day I wish I had another pair.

Some days my shoes hurt so bad that I do not think I can take another step.

Yet, I continue to wear them.

I get funny looks wearing these shoes.

I can tell in others eyes that they are glad they are my shoes and not theirs.

They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them.

But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.

There are many pairs in this world.

Some woman are like me and ache daily as they try and walk in them.

Some have learned how to walk in them so they don’t hurt quite as much.

Some have worn the shoes so long that days will go by before they think about how much they hurt.

No woman deserves to wear these shoes.

Yet, because of these shoes I am a stronger woman.

These shoes have given me the strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

Author, Unknown

"Be Still and Know I am God"

It took me a while to truly grasp this Bible verse. It is now what I hold onto. I know that I cannot control what happens in life. God is God and I am not. I will be still and trust in him. What a hard lesson that was. The year after we lost Caelyn was a tough one. One of questioning and anger towards God. "Why us Lord?" I often found myself asking. Although, I miss my babies I wouldn't ask for them to give up their perfect life in Heaven to be here with me in pain and suffering. I love them with all of my heart and can't wait for our perfect reunion.

I believe we have a purpose here on earth and I will trust in God to fulfill that purpose. I have so many things to be thankful for; including a loving God, my family, my wonderful friends. Thank you all for your love, support and prayers.

Poem

"I thought of you with love today, but that is nothing new,
I thought about you yesterday and days before that too.

I think of you in silence, I often speak your name,
All I have are memories and your picture in a frame.

Your memory is my keepsake, with which I’ll never part.
God has you in His keeping, I have you in my heart."

Caelyn & Bella

Caelyn Nicolette, born still on June 27, 2007. We dedicate this blog to you and your little sister Bella who went to heaven September 23, 2008. We miss you both and love you very much.

Caelyn was born 5lb 9oz and 17.25 inched long. We later found out that she has a genetic syndrome that her daddy and I carry known as SLOS, short for Smith Lemli Opitz Syndrome. My babies were not able to convert 7DHC to cholesterol because they lack the enzyme that is does that job. To learn more about SLOS and how you can help go to www.smithlemiopitz.org. Little Bella Nicolette was only 12 weeks gestation when her heart stopped beating. We were so devasted to hear she also had SLOS, we love her and miss her terribly.