Corrected

Today is a hard day for me, it is Colton's 2nd "Corrected" Birthday. In the preemie world a corrected birthday is the date the child should have been born (the mother's due date). For Colton this day was March 17, 2008.

I was very excited to have a March baby, it was the perfect month in my opinion, not too hot or cold, just right. Our family is full of Fall and Winter Birthdays so it was a chance for our son to have his own little part of the year. I was quite disappointed when Colton decided to make his early appearance on November 25, 2007. Not only was my son fighting for his life but all my dreams of the perfect birthday for him had been crushed... you think of all the silly little things that could have and should have been when you have months to sit with your thoughts in the NICU.

In the beginning of our NICU experience they told us if Colton made it he would probably be in the hospital until around his due date. That date came, then went and we still didn't have Colton at home with us, I honestly cannot tell you how I made it to May 14th, it was the hardest 172 days of my entire life.

Colton celebrated his 2nd "actual" birthday 4 months ago. When I think about how far in the past that seems I realize just how much time he was robbed of to grow and thrive inside of me. It also reminds me how much of a miracle he is, as if I could EVER forget that.

Today is a hard day. It's hard because every time I close my eyes I am taken back to March 17, 2008 sitting by Colton's bedside, fighting back tears, reminding myself I needed to be strong for my little boy and wondering if he would ever make it home alive.

Corrected Birthdays should not exist, March of Dimes is working so hard to eliminate the term and make sure that ALL babies are born healthy but they need help to make this happen. I challenge you to donate just $5 today to help this very worthy cause in honor of Colton and all others who know just a little too much about corrected birthdays.

Happy Corrected Birthday, Sweet Boy
You're pretty much amazing!Colton Lee Darnell, March 17, 2008

A Decade (Part 3: 2007-2009)

As far as my life goes thus far, 2007 has been the hardest part of it all. It started off okay, in January I turned 21 and celebrated with friends.In February things started to fall apart. Seth and I called off our engagement, we were fighting all the time and both of us had pretty much given up on the other. At the time we were living together in Campbellsville, both still attending CU, his name was on the lease so I had to find another place to live and fast. I moved in with some friends that April, we had fun but I couldn't help thinking something was missing. Seth and I were still seeing each other, taking part in the occasional "overnight visit". *Cue pregnancy test* In June I found out I was pregnant. Seth and his family were not particularly happy with the news, which only hurt me more. Eventually, August rolled around and the friends I had moved in with decided to move out, my parents and I decided it would be best for me (and baby) to move back to Frankfort. I moved back August 1st. Seth stayed in Campbellsville.

On August 6, 2007, very late in the evening, my phone rang, it was a friend from Campbellsville. Pam and Christie had been in a car accident, Pam had been killed. I lost it. I remember thinking how could something so horrible happen to someone so wonderful. Now I realize that I was right about how wonderful she was, God knew it too. That is exactly why he brought her home to him so early in life. I miss her dearly. Selfishly, I wish she was still here but I know that she is in a much better place and I will see her again someday.

The next couple months went by in a blur. My pregnancy went by slowly, Seth came home to visit most weekends, we were still not "together" but trying to work on things. On November 25, 2007 I went into premature labor due to an e-coli infection. Colton Lee Darnell was born that day, 17 weeks early. He stayed in the hospital, in critical condition, for the remainder of 2007. It was the worst time of my life. Seth and I leaned on each other, he moved back to Frankfort and we discovered that the three of us; me, him and Colton, belonged together.

2007 was the year of pain.

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The only goal I had for 2008 was to make it better than the year before. With a lot of help from God, I succeeded. In May, Colton finally got to come home from the NICU.I finally got to be a hands-on, 100% of the time Mommy. That little boy holds the key to my heart. Late that summer, Seth proposed (for the second time) and I said YES!On November 15, 2008 I married my best friend. It was amazing.2008 was the year of magic.

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Now, here we are at 2009. It is amazing how much things can change in ten years. This year we bought a house and completely renovated it.and our miracle baby boy turned TWO!Looking back over the last decade, one thing is for sure, I have been blessed beyond belief. 2009 has been the year of joy.

Wishing everyone a Happy New Year. May all the days of 2010 find you living, laughing and loving. See you all next year!

The Graduate

When you have a child in the NICU at UK Hospital, the experience doesn't quite end the last day of their NICU stay. For the first year you have to visit the NICU Graduate Clinic every couple months, then you have an appointment at 1 year and a final visit at two years of age. Colton had his final visit just last week.

The first time we walked into the graduate clinic, about a month after Colton left the hospital, I still had sooo many questions about his future. I remember sitting in the waiting room, eyes glued to the play area, wondering if my son would ever be well enough to play with those toys. Imagine my joy when I sat in almost the same exact spot last Wednesday staring at this...

and YES in that last picture he IS doing the baby sign for 'horse'. (I know, I know, my kid is a genius.) I just sat back with Seth, smiles plastered across both our faces, watching the miracle that is our little boy. Just when I think he can't possibly amaze me anymore, he goes and proves me wrong.

After a check up with several doctors, therapists and specialists, Colton graduated (to quote one of his former NICU nurses) "with honors". His weight held steady at 22.5 pounds. They are still slightly concerned about his length but not concerned enough to start him on growth hormones just yet.


We left the clinic with diploma in hand (it is now proudly posted on our refrigerator) and spent the rest of the morning at toys-r-us to celebrate. It was a marvelous day.

172 Days

Today, Colton's birthday, we finish the story of his NICU experience. It has been great to share his story in honor of Prematurity Awareness Month.

May 12, 2008
COLTON'S COMING HOME! Seth and I are spending the next two nights at UK taking care of him as if he was at home but still having the crutch of the nurses if we REALLY need them. We are staying in a private room with him and so far this morning everything is going great... Colton is sleeping just inches from me as I type. Seth had to go to work a little while ago so Nana is up here keeping us company. The oxygen and monitor people are going to meet with me in just a little while. On Wednesday we will finally have our miracle boy at home with us! I almost forgot we have even more WONDERFUL news. Colton had a hearing test yesterday and... His hearing is normal!!! Praise God for this amazing information!


May 13, 2008
Last night went very well. No problems other than the fact that Colton likes to sleep more during the day than at night. We meet with the oxygen/monitor company at 11 this morning. He is sleeping now so I am going to try and eat breakfast.
***UPDATE
This morning we had training for the home monitor and home oxygen. I hooked up the monitor after the training and it has not went off once. And as I type Colton is next to me asleep in his car seat. They put them in their car seat for the length of time it will take for us to get home tomorrow. As long as he handles it well and keeps his "numbers" in a certain range then we are good to go. The eye doctor has cleared him for discharge so nothing is holding us back, we are going home tomorrow! He has pictures at 9:30 a.m. and then we will be getting ready to head home.

May 14, 2008
After 172 days at UK Hospital's NICU, Colton Lee Darnell is finally going to get to come home today. We are still at the hospital but in just an hour or so we will be walking out the front door with our little miracle. I am so amazed and humbled by our experience here, I have grown as a person and a mother over the last several months. I am especially thankful for all of our family, friends and strangers who have diligently prayed for Colton and given us so much help during this rough time, we are forever grateful.

May 15, 2008
Colton is at home, resting peacefully. Right where he belongs.

Why I march...

This story about Colton and March of Dimes was in the Thursday State Journal.

While most mothers bring their babies home shortly after birth, Crystal Darnell waited an excruciating 172 days before her son, Colton, could leave the hospital. And worse, on the day of Colton's birth, doctors gave him a 10 percent chance of living. Born four months early, Colton's miniature body was seriously underdeveloped, and a bleeding in his brain would permanently take away his eyesight.

"He looked like a snickers bar with arms and legs," said Darnell. Seventeen months after Colton's surprise birth, Darnell, 23, sometimes wonders what it must have felt like for him to spend his first six months in pain, often on the verge of death. "He amazes me," she said on a recent afternoon during Colton's physical therapy. "He's such a fighter. He had to fight to make it, but that doesn't get him down. He's so happy to be here."

Colton, who has grown from one pound and four ounces to 17 pounds, giggles and feels his toys with his mouth. Whenever he hears his mom's voice, he moves his head in her direction. He loves the sound of her voice - that voice that prayed over him and whispered to him from the other side of his incubator. "Colton, I love you, and I need you to hold on," she told him on day 10. "I know it's hard, but God is with you, and he can help us all through the tough times."

It's Darnell's harrowing experience that involves her in the March of Dimes. Research, largely funded through the March of Dimes, is crucial to keeping preemies like Colton alive, she says. "Forty years ago, there wouldn't have been much of a chance for him," she said. The March of Dimes is the leading fundraiser for research into the causes of premature births. The national walking event has raised $1.8 billion since 1970, according to its Web site.

Another goal is to raise awareness that premature birth is the leading cause of newborn born death and many lifelong disabilities. While rates have improved drastically over the last half-century, one in eight babies is born prematurely, according March of Dimes statistics. Walks are held nationwide to remind teams to raise money.

The Frankfort March for Babies will be Friday (for state employees) at the Capitol and Saturday at Lakeview Park (for community members). "State employees have been really generous to us," said Megan Jones with the March of Dimes. "We decided to have an extra walk for them since so many come from cities around the state." Last year, the walk raised $102,000 - much from state employees, Jones said. She expects more than 300 to participate in both walks. "Anyone is welcome to come to either walk," she said.

Colton's team is made up of his parents, grandparents and their friends. They are walking Saturday and hope to raise $500. "These are very serious, life-threatening issues," Darnell said. "If it wasn't for the hospital - and God - I wouldn't have Colton." Doctors determined that an E. coli infection caused Darnell to go into labor prematurely. She was rushed to the University of Kentucky Medical Center, where she gave birth to Colton, who was a meager 12-inches long. A team of specialists kept him alive at UK's Neo-natal Intensive Care Unit.

Over several months, Colton received countless surgeries and blood transfusions. There were days doctors thought he wouldn't make it, Darnell said. She and her husband, Seth, watched him through his incubator and asked God to spare his life. Because she could not hold her baby, Darnell wrote to him in her journal. Nine days after his birth, as she sat watching his monitors, she wrote, "Right this second your numbers are jumping up and down - I'm trying not to look. It drives me crazy when you do that. You're still doing it. I want to pull my hair out Stop, please. This is so hard, but I know it's even harder on you. I'm so sorry, I wish I could make it all go away for you we just both have to be strong."

Colton did what his mother asked, and was finally well enough to go home on Powhatan Trail on May 14, 2008 " a day filled with "emotion and lots of tears." "When we left the NICU, all the nurses gathered around and took pictures with us. Then everyone clapped as we left it was like a scene from a movie," Darnell said.

Today, Colton is learning how to crawl and stand and speak. He has learning delays because of his blindness, but physical therapists are helping him work around it.He adores his dad and can endlessly prattle "da, da, da." He loves music, eating and exploring anything with his mouth.Saturday, Colton will complete the walk in his stroller as he takes in the beautiful sounds of life."He loves being outside," Darnell said. "He can't see, so he raises his hands in the air and feels the wind. He likes the way the wind feels in between his fingers."

The SJ did a wonderful job with the article. However, Colton's blindness is not caused by his IVH or "brain bleed" as she put it. Retinopathy of Prematurity (ROP), a disease that is very common in preemies, was responsible for his vision loss.

As stated in the article TEAM COLTON participated in our local March for Babies for March of Dimes this weekend. We raised a little over $500.00, we reached our goal! I am so thankful to everyone who donated and/or walked with us.