Optimistic?

April 22, 2008
They took Colton to surgery about an hour ago... Seth and I made
it here early enough to spend a little time with him before he went
down. They haven't paged me yet so I am assuming things are going
well... last time (the failed shunt attempt) they paged almost
immediately after they took him back so I am going with the no news
is good news theory.
*** Update
Colton's surgery went very well, no complications. So, Colton finally has his shunt!!! A lot of the nurses came in as he was recovering and said "FINALLY". Nurse Heather was there to take wonderful care of Colton. While we were there he woke up quite a bit, moving around his arms and head, He is still on the vent and probably will be at least until tomorrow... but they have already started feeding him, he is handling that well. The physical therapist came in to evaluate Colton last week and got to discuss the results with us this morning. For the most part she let us know that she is mainly concerned about his sight and hearing... she said he is hearing and seeing, she is just isn't sure he is doing so well. There are also a few issues with his muscle stiffness, meaning he will have a harder time doing some things compared to another child. There is a program that we automatically qualify for due to Colton's grade 4 IVH (brain bleed) so we will start that shortly after he gets home. It will help him in all aspects of his development. It continues up until age 3. We are going to make sure we do whatever we can to give Colton the best chances possible to excel development wise. I beg everyone to remember that this is an initial visit and the findings are very rough. Also remember that no matter what difficulties he faces Colton is still a wonderful perfect miracle boy. I am sure most of you already know this but I often get questions like "What if this or this is wrong with him, what are you going to do?" God has a reason for everything! Thank you all for the prayers today... they mean the world to us!

April 23, 2008
I just got off the phone with Heather and Colton is off the vent as of this morning. He has had a few spells since then, if they get worse he might have to go back on for a little while but as of right now he is off. He is also tolerating his feedings just fine but they are not yet giving them to him by bottle because he was on the vent for that time. The next step is for the eye doctor to come in and decide if he needs surgery on his other eye or not. Hopefully he will come in tomorrow but if not Heather promised me she would track him down for sure by Friday.

April 25, 2008
Today Colton is FIVE months old... he is getting so big. He weighs 7 pounds 11 ounces!!! The eye doctor finally came in to check on his eyes this morning and decided that he does need surgery on the left eye. They are shooting for next Tuesday to get this done. So far there have been no problems recovering from his operation to place the shunt (knock on wood).

April 28, 2008
Tomorrow Colton will have his second vitrectomy (eye surgery) to try and repair the effects of his Stage 4 ROP in the left eye. They do not usually give me a time for surgery until late the night before or the morning of... I will be sure to post the time as soon as I find out. I have also been given a little bit of bad news concerning the other eye. It turns out that he will have to have another surgery on that eye next week. They cannot do them at the same time because it would be too much strain on Colton's tiny body. His right eye was progressing for sometime but now has detached again. This is not a good sign for his vision but the Doctors are doing all they can to correct the problems. I know that my optimism has been questioned lately but I would like to say that I do have a very optimistic view of this whole situation and that is this... Colton has been a very sick little boy for a very long time, there are a lot of odds working against him as far as him developing like a "full-term" baby. I have been told that preliminary studies of his vision/hearing cause some reason for concern and his muscle tone is going to make it hard for him to function as easily as other children. That is the realistic side of the situation. Now comes the optimistic part. My optimism lies in the fact that no matter what problems we face, WE CAN GET THROUGH IT! We will make it work no matter the difficulties and challenges. I know that I will do all I can to give Colton the most rewarding life possible. My optimism lies in the fact that Colton will be loved by so many people who will do all they can to help us and pray for us just like you all have. My optimism lies in God and the fact that he has a reason for everything, the fact that I can turn all my worries over to him and throw up my hands and he will take care of us, all of us. So, I ask that you continue to pray for Colton but don't emphasize the desire for Colton to have a perfectly "normal" life... what is "normal" anyway? Pray that God's will be done... because our optimism should lie in the fact that no matter what it will be done and that is a great thing.

April 29, 2008
Colton is out of surgery and everything went fine. He is already waking up and they are trying to lower his rates on the vent to get him off soon. I had a talk with Dr. Blackburn just now and he said the left eye (they one they worked on today) was in pretty bad shape, they had to remove the lens which means he will have to wear a contact to protect that eye. Even after the surgery today the Doctor feels like Colton's right eye is going to be his good eye (we won't know how good until next week). He did say that Colton will be able to see "something" out of the left eye but he will not be able to read with that eye. I am not quite sure what that means as far as overall vision but next week we will know more. He did give me some good news... He anticipates that after the surgery next week he will be finished with his eyes (surgeries) for at least 4-6 weeks, possibly for good. So, Dr. Blackburn predicts that Colton will be able to go home after this next vitrectomy. I am now going to knock on something made of thick wood!

Next: Plans

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.