With a little help from my friends.

***UPDATE*** Since posting, I have had some people ask if it is possible to send a donation through snail mail. Our answer: why of course it is possible! Just shoot me an email at CGDarnell67@hotmail.com and I will reply with our address. And, once again THANK YOU!!!!

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ORIGINAL POST:

Before Colton's latest trip to Detroit, several people asked if we needed help with the related costs. I knew that, with the help of our immediate family, we could handle the cost of that short trip so the only help we requested was prayer.

After meeting with Dr. Trese earlier this week, it was determined that Colton's vision would greatly benefit from surgery in both eyes. For this to happen we are going to need to return to Detroit/Royal Oak, Michigan from January 25 through February 1. I cannot even pretend that we are capable of affording gas to & from and a hotel room during that time on our own. So, that's where anyone who wishes to help comes in. I have placed a 'donate' button from paypal on the upper right hand side of my blog for anyone who wishes to make a donation. Any little bit will help and I guarantee that it is greatly appreciated.

If for some reason we did receive more than required for Colton's medical travel expenses, I will donate it to March of Dimes and Friends of Maddie, both organizations that benefit babies and families in the NICU.

On a side note, tomorrow we have to spend the day at UK Hospital. One of Colton's kidneys has quit working so they are going to run a scan to see exactly what the problem is. They are also going to do an MRI of his brain so we can get some more info on what (if any) brain damage he has going on from his brain bleeds and brain surgery early on. He has to be put to sleep for these test, that always makes me a little nervous... our little rascal has been known to crash under sedation, they know this though and always make sure they are prepared for the worst.

I am so thankful for all of you and of course we are still in need of each and every prayer sent our way. Thank you and God Bless.

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.

The NICU Rollercoaster

They have a saying in the NICU, that they share with you almost immediately, the NICU journey is is like an intense rollercoaster ride. You will have steep ups followed by sudden downs, sharp curves and mind-bending twists and turn.

The night of my son's birth was a rough one. Seth and my mom both stayed in my hospital room with me. I would drift off to sleep only to be suddenly awoken by horrible nightmares involving the events of the day. I could not yet get out of bed on my own, I was too weak, so I sat there fearing everything that could possibly go wrong. Eventually I realized I could turn on a lamp and write in a journal that Seth's mom had brought me without disturbing anyone else. The following are a combination of excerpts from that journal and the website that was sit up through the hospital to keep Colton's many prayer warriors updated.

November 26, 2007
Colton is stable but having to fight to stay that way. His lungs are horribly underdeveloped. They gave me a steroid shot to help with the development but it takes roughly 24 hours for that shot to make any difference. My leg still hurts, the nurse had to jab it into my thigh. I had him only a couple of hours after the shot, meaning it didn't really help. If I could have just held him in a little longer. At 2 (am) my mom and Seth said they would wake up and take me to the NICU to see him. I already love him so much. I'm so scared.

November 27, 2007
Colton has received 4 blood transfusions in the short time he has been alive. I have been told this is very common. There have been several scares, he desats often, meaning his vitals go below what they want them to be at. At first his ventilator was breathing entirely for him, now he is breathing 13% on his own, I am so proud of him, his little body is working so hard. I need him to hold on, is that selfish? I need him to make it. A head ultrasound done earlier revealed that he had some bleeding on the brain, they grade it from grade 1 to 4, 4 being the worse, his is at a 2, it can get better or not, they will check it often. He is also under a blue light for jaundice and has to wear tiny foam sun shades. His eyes are still fused shut as they would be in the womb, but they still need to be protected. I am going to be released from the hospital at 10 tonight. We are on a waiting list for the Ronald McDonald House here in Lexington since going back home to Frankfort would mean being 30 minutes away from our son, we don't feel comfortable with that just yet. Tonight they are letting us stay in one of the hospital's four rooms reserved for parents of children who are "touch-and-go", it is only feet away from the NICU. I'm so thankful I do not have to leave the hospital just yet.

November 28, 2007
I had to leave the hospital today, everyone convinced me it was best for me to get some fresh air and some form of nourishment other than hospital food. On the shuttle ride from the hospital to the parking garage, I looked out the window up at the 4th floor and cried, it was one of the hardest things I've ever had to do, to leave my baby behind. We found out today that Colton had to be resuscitated for seven minutes when he was born, for seven minutes my son was dead. Right now I cannot tell you how thankful I am for the medical advances that have happened in the last decade or so, without them Colton would not be alive. His brain bleed has gotten worse, moving from a level 2 to a 3 today, it is possible for it to correct itself. I haven't yet asked (out loud) what happens if it doesn't. I am sitting at Colton's bed side as I write, he is so amazing, I want to hold him, to snuggle him, to let him know I am here. I can't do that just yet but the time will come, when he is ready.

November 29, 2007
We are now staying at the Ronald McDonald House, the people are nice but the mood is somber, everyone is so worried about their children. A nurse told me today that preemies usually go home around their actual due date, his is March 17th, St. Patrick's Day. It was nice for someone to even mention the fact that he would even get to come home, I know he still has a long way to go but I am trying to be optimistic. I think the Nurses feel like if they are too optimistic they will give us false hope, no need to tip-toe around me I already have exuberant amounts of "false hope". I am finally able to produce breast milk and administer it to Colton through a syringe and feeding tube. He only gets a microscopic amount, but I actually feel like I am doing something to help him, they say it is the best thing for him.

November 30, 2007
We have a new nurse today, her name is Heather. I can tell she is going to be our favorite.

December 3, 2007
We have been going uphill on the "NICU Rollercoaster" for a short time now. Colton is stable, nothing has really changed. I am so terrified that soon we are going to find ourselves plummeting over the edge of a sudden drop.***


***If I had only known how right I was...

Next: Holding on for Dear Life

The Day My Life Changed Forever (Part 1)

It is November and in honor of Prematurity Awareness Month and Colton's Birthday (the 25th) I will be re-telling the story of Colton's birth and NICU journey on my blog over the next several weeks. Some posts will be told from what I (and others) remember and the rest will be written word for word from a journal I kept for a short time during his first month of life.

At 7:30 in the morning on November 25, 2007, I woke up with the same urge to pee that I had woken up with every morning since I became pregnant. On this morning though something was different, something felt off. It was hard for me to get out of the bed and I had pains in my abdomen and back which I attributed to the Braxton Hicks contractions I had read so much about in my "What to Expect When You're Expecting" book. I thought nothing of it, after all the book says these pains are normal. I went from calm to cautious, though, as I stood up from the toilet to see a small amount of blood mixed with my urine. Bleeding was not completely uncommon in my pregnancy so I woke Seth up, let him know what was going on, he urged me to go back to sleep for a couple hours and take it from there when I woke. I set the alarm for nine and fell back to sleep with little trouble. The beep of the alarm clock woke me in what seemed like just a short time, I stood up to return to the bathroom and assess the situation but quickly fell back down on the matress, I was in terrible, throbbing pain. After 30 seconds or so it went from unbearable to just uncomfortable, I woke Seth up again, without even checking the bleeding, to tell him that things were definitely worse. Being the "man" that he is, he told me I was probably fine but if I was really worried I should go downstairs and ask his Mother since she had been pregnant before and well, obviously, he had not. (We were staying at his parent's house for the night) Practically crawling I headed down the stairs and into his Mom's room to wake her and ask her the opinion of a female. While waking her up I experienced another sharp throbbing which caused me to grab my stomach and double over in pain. When she saw that I was having that much trouble we both agreed that I needed to be at the hospital so she went upstairs to wake Seth back up so he could take me. In the short time it took her to do that, I had another throbbing pain, they were getting closer together. Because of the pressure I felt in my lower abdomen I thought I might need to go #2 really bad so I made my way to the downstairs bathroom. When I walked in I caught a glimpse of myself in the mirror, I was as white as a ghost and noticed that I had sweat building up on my forehead. "Something is very wrong" I said outloud to myself and decided not to even attempt to sit on the toilet, there was no guarantee that I would be able to get back up. I met Seth and his mother in the foryer, by then he knew something was not right, he draped a jacket over my shoulders, slipped shoes on my feet and helped me out to the car. The local hospital was about 15 minutes away, I layed down in the back seat of Expedition, having what I knew now were contractions as Seth did 95mph to make it across town. About half way there I heard him let out a "Oh No" under his breath. "What?" I half yelled at him. He told me we were going to have to pull over for just a second. I think I said something along the lines of "why in the world would we pull over" but just as I finished talking I heard the sirens of a police car quickly approaching us. A cop was pulling us over... NOW?!?! What luck! It took him FOREVER to get to the car and when he finally got there he would let Seth utter a word until he muttered the standard "Do you have any idea how fast you were going" and "What exactly are you in such a hurry for". Seth pointed to the back seat where I was panting and moaning and told him that I was in the labor and I was only 23 week along. The cop stood there with a dumb look on his face for a couple of seconds, then told us not to run any red lights and walked away. When we made it to the Emergency Room at Frankfort Regional Medical Center, I was in the worst pain I had ever experienced in my entire life. While Seth went to register me, I was so out of it that I actually laid down on the waiting room floor. At this point, the worry was not yet trumping the pain, I thought they would just give me something to stop the contractions and send me back home. Eventually Seth came back with a Nurse and a wheelchair to get me up to Labor and Delivery. One of my Doctor's just happened to be on call, he met us as we got off the elevator to ask some questions. Seth pushed me into the room and helped me change into a gown while the Doctor prepared to examine me. As soon as he checked my cervix he yelled something to the Nurses in the hallway and told me that I was 7 centimeters dialated. He got up from his stool and came to the head of the bed with a very serious look on his face. "You're going to have a baby very soon" he started "and if you deliver at this hospital the baby will not survive, we just don't have the equiptment to handle an infant that small. We are going to send you to UK Hospital, the NICU there is the best place for your baby to be." Seth and I just looked at each other then he sprung into action, he went to talk to my parents who had been called earlier while heading to the hospital. I heard talk around me, they were trying to decide if I needed to be flown or if an ambulance would make it in time. After someone (my mom or Seth, I'm not sure which) told them I had never flown in an airplane or helicopter in my entire life they decided an ambulance was best. People were talking to me, talking at me, all around me but I couldn't respond, I was in shock. I was in some deep, dark place that I had never been before, picturing my baby born blue and not breathing then in a coffin so tiny and fragile, dead and cold. A stabbing pain in my leg jerked me from my morbid thoughts and I realized that there were nurses all around me. They were giving me shots to help my babies severely under-developed lungs and slow the contractions, I noticed monitors that had been placed all over my body. Minutes later the paramedics entered the room as they were briefed by the nurses a look of terror came over there faces. Why were they scared? Weren't they trained for this kind of thing? "What are the chances she will deliver on the way there?" one of them asked. The Doctor procedded to tell them that he was pretty sure I would last the 30 minute drive to Lexington but if not there was really nothing they could do. My contractions were getting worse and I wasn't sure he was correct... I prayed that he was.

Part 2
Part 3

May 14th

In the preemie world there are usually two birthdays, the corrected and the actual. Colton's actual is 11/25/07, his corrected is 3/17/08 (his due date). There is one more very important day in Colton's life, May 14, 2008, the day he came home from UK Hospital. There are no words to describe how a mother who has been trapped in the world of the NICU for any extended period of time feels the day she finally brings her little miracle home. It is the best feeling in the world (once you get passed the terror of no longer having medical professionals on hand 24/7). On this day last year I finally, after 172 days of his life, carried Colton through the front door of our home, up the stairs and into his room. His room, the place that had felt so wrong, like something was missing, was finally complete, he was home. Now, a year later, I once again find myself at a loss of words to describe the way I feel. The only word I can imagine to describe the feeling I get when I look into Colt's precious little face is blessed, truly, truly blessed.

The Darnell's, just before leaving UK Hospital for the first time as a family.


Two of my favorite people at UK, Heather and Kristi telling Colton "Bye"

Time to go!

Colton playing with Mommy today, May 14, 2009.

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.