Miracles Happen!

Miracles Happen! was our 2010 March for Babies - Team Colton theme. I am very proud to say that we raised over $1600 (double our goal) during our second year participating in the March for Babies. Thank you to everyone who helped, donated and joined us at the walk... you guys are amazing, I say that all the time but it really is true.. we have the greatest friends and family.
45 people joined us this year at the annual event (a few missed the team picture).
The kids/babies had a blast and spent the day being absolutely adorable.
The "big kids" had fun too.
Then we marched......and marched......and marched.It was a beautiful day for a beautiful cause.

Thank you for all your help.
Love Always,
The Darnells

Giddy On Up

Unless you've been hiding under a rock (or you don't dig country music) then you know who Laura Bell Bundy is. I love her music and after watching a special on her found out that at heart she really is just a down home country girl. Team Colton is doing a drawing for her new CD Achin' & Shakin' to benefit March of Dimes. All you have to do to enter is make a donation to our March for Babies team by clicking HERE or the sidebar over there ==========>

For your viewing pleasure here is Laura Bell's fun music video for Giddy On Up.

Goodies for Babies

Last year was our first year participating in March for Babies, the year before that Colton was still in the hospital. So much was done for our family while Colt was sick and in the NICU, March of Dimes was the best way for us to give back. Last year we raised a little over $500, not bad for a bunch of rookies. This year we decided to raise our goal to $800 and each year we plan to raise our goal $300 over what we raise during the previous year. The March for Babies Frankfort/Lawrenceburg is just one week away and we, Team Colton, have already exceeded our goal. We are just under $1,200 and still fundraising until the very last minute.So many people have helped this year, family, friends, even strangers. We are so thankful that others care as much about prematurity and birth defects as we do. There is no possible way to thank all of the people who have worked so hard to help us but we do want you all to know that we think you are awesome!

A couple weeks ago we held our first annual Team Colton Bake Sale aka Goodies for Babies, it was a hit. The baked items were offered for a donation to Team Colton and we raised over $300 in just 4 hours.Of course Colton had to work really hard too... at being so stinkin' cute for all his fans! He was certainly exhausted by the end of the day.Helping babies, like Colton, born too small and too sick made all the hard work well worth it.

***If you would like to contribute to Team Colton click HERE!

To blog or not to blog...

I have asked myself that question almost every day for the last three weeks... the answer, obviously since I have not posted in like FOR-EV-ER (cue Sandlot sleepover scene), is always not to blog and to take a nap or clean or play with Colt or catch up on my DVR instead. It isn't that I am at a loss for ideas. There have been plenty of things to write about like...

the Team Colton Bake Sale for March of Dimes,
the fact that my mom and I have started a new business adventure,
Colton's super cute new pictures
and of course Easter.
I've been busy (oh, alright, you caught me, and lazy) so I haven't had time to write. I am on a mission to change that... will it be mission accomplished or mission impossible? Stick around to find out.

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

Ball of Infection

Hopefully, no one noticed that I only wrote like 6 posts in February... it's not entirely my fault though. Colton spent most of the month either recovering from eye surgery or being sick. It's been a rough month for him, ear infections, upper respiratory infection and one very nasty sinus infection... he has basically been one big ball of infection all month (costume idea for next Halloween...?) and he has been the grumpiest he has ever been in his entire life, literally.

Well Colton is back as of yesterday!!! He is back on his regular schedule and back to his smiley self (despite the still-constant stream of snot running out of his nose). This makes me very happy. Don't get me wrong, I did enjoy the extra cuddle time he insisted on just about every night but I am so thankful that my baby boy is getting back to his old self, I missed him.

I have also been increasingly busy with March for Babies - Team Colton fundraising (you can click the link if you would like to contribute). Considering Colton's battle with prematurity, our family is very passionate about March of Dimes and everything they do for babies like him. We have a few fundraising events in the works but I am slowly running out of ideas, if you have any suggestions that have worked for you in the past then please feel free to suggest them.

I am going to try very hard to at the very least write more posts this month than I did last... I am sure I can do it. We only have one trip Michigan this month (on the 22nd) so I think I will have much more time on my hands.

Getting Back to Normal

Sorry that I haven't updated much lately, we've all been working pretty hard on March of Dimes stuff around here lately. Team Colton is at it full force!

Colton is almost back to normal, I'd say about 80%. He still keeps his eyes closed and head down a lot. I asked Dr. Trese about it during our latest trip to Michigan and he assured me that Colton is just keeping his head down and eyes closed trying to keep us from giving him his eye drops, he still hates them with a passion. The Doc was still very optimistic for improved vision, getting a strong red eye response in both eyes. This means that nothing is blocking the retinas now, like the scar tissue was before the surgery. I asked a couple time if he could tell me just how much "improved" we were talking and he gave me the same answer that he did right after each surgery... "We will just have to wait and see but things look good". Like I have said before, it will take up to nine months for us to know just how well the surgery worked, talk about anxiety, shew!

In other news, Colt got his first "real" haircut yesterday. He won't quite look up for pictures just yet so I will have to try and get one soon, he looks like such a big boy. Daddy and I did it because we knew he wouldn't let anyone else near his head right now. I held him while Daddy cut his hair and guess what... he loved it... who knew?

He is doing so well at cruising the furniture, I have a feeling that one day he will just take off, once he gets going there is no stopping him, he's a fighter.

There isn't much else to report, we are all (currently) happy, healthy and thriving.

Why Do We March?

Make video montages at www.OneTrueMedia.com

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.

Plans and Predictions

May 7, 2008
The surgery that was scheduled for yesterday was postponed until Friday due to scheduling conflicts between the OR and Dr. Blackburn. We were all a little disappointed because we really wanted to get the last surgery out of the way but at least it didn't get pushed back to next week. I will let you all know the time as soon as I find out... which probably will not be until the morning of. In other news... We have a plan to get Colton home!!! Before I reveal this plan, I would like to say that in the past Colton has not been very good at following the plans that the NICU and I plan for him. He likes to do things his own way... wonder who he gets that from? According to the NICU staff we are going to have surgery on Friday, get off the vent on Sat, start feedings again Sat/Sun and get out of the hospital next week! The exact day will depend a lot on Colton... he'll let us know when he is ready. Lately he has been really fussy and Heather tells me he is getting older and is just ready to get out of that place. I have discovered recently that it is beneficial to "knock on wood" right after I write an update with any sort of "prediction" in it... so I am going to do that right now.

May 9, 2008
I talked to Nurse Darla late last night/early this morning and was told that the eye surgery was still scheduled for today but no time had been determined yet. I was informed that it would be in the afternoon sometime though. I will be posting updates periodically throughout the day in order for you all to know how Colton's last surgery while in the NICU (hopefully) is going.
***UPDATE: Everything went fine with surgery... Dr. Blackburn said that the eye was doing okay and that we are finished with eye surgeries for now but he will do a check up sometime next week.

May 10, 2008
Colton pulled himself off the vent yesterday and did just fine proving that he is a big boy now and doesn't need it... even right after the surgery! So we are ahead of schedule because the plan was to take him off the vent today (Sat.) and start feedings sometime today or tomorrow. Well guess what... our little piggy just couldn't wait to eat so they started his feedings back last night too. No word yet on going home but it is the weekend and the nurse this morning told me that sometimes, depending on what Doctors are there, they won't really say anything about going home until a weekday. We are getting so close... I can feel it. I have postponed picking out a "going home outfit" just so I wouldn't look at it everyday and get my hopes up but this morning I got it ready to go! Speaking of clothes, Colton is really close to fitting into his 0-3 month stuff meaning he will soon have outgrown TWO clothing sizes... Preemie and Newborn!!! To me that is AMAZING because I remember not too long nothing would fit him.

May 11, 2008
HAPPY MOTHERS DAY! I hope all of my fellow Mothers have a wonderful day today. I feel so honored to be the mother of such an amazing baby boy on this special day.We have a tentative homecoming date for Colton. On Monday they will start the process of sending him home and the nurse today said on average that "process" takes approximately 3 days meaning as of right now Wednesday is the day. I have learned that NOTHING is ever certain in the NICU but still it is nice to have been told an actual day for the first time. Colton Lee is becoming a fussy little boy who is ready to get on with the rest of his life. The nurses say the extra fussiness is just him expressing his desire to go home already.

Next: 172 Days

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

Waiting Game

March 27, 2008
Colton got off the vent at around 4 this afternoon. He hasn't had any trouble since they got him off. He is being fed and handling that fine as well... they are slowly increasing his formula to get him back up to where he needs to be. We get to take his swing that Aunt Donna got him up to Lexington tomorrow... they say he is big enough for it now, I know he will love that. Seth and I got to spend some time holding him this evening... we haven't got to do that since before the last surgery so it was great! No new news concerning the shunt... the neurosurgeon wants him to be a little bigger due to his "event" last time. He weighed 5 pounds 13 ounces tonight.


March 31, 2008
Colton has officially outgrown his preemie clothes!!!!! He is now wearing newborn... I never thought I would be able to say something was too small for him but it happened. As of last night Colton weighed 6 pounds 5 ounces... he is getting sooo big! The feeding tube was removed yesterday, he is receiving all of his feedings by bottle and they are almost up to what they were before his surgery. They no longer feel the need to check his aspirate (left over food in his tummy). Yesterday Colton got to swing for the first time and boy did he love it!


April 6, 2008
Not much to say in this update. Right now Colton is just growing and resting in the NICU. He does have an infection but he is on antibiotics and that should be taking care of it. His eye surgery was postponed due to the infection... no word on when it will take place now. Everyone keeps asking when he will get to come home and my honest answer is no one really knows anymore. They keep preparing us for his homecoming and then something comes up causing him to stay in the NICU for a little bit longer. Colton keeps finding new ways to get in to trouble :) So your guess is as good as mine but hopefully he will be home soon. Keep your fingers crossed and keep praying. Colton weighed 6 pounds 12 ounces tonight.
April 16, 2008
Sorry for the lack of updates but as I said in the last post there really isn't much to say and I have been sick a lot lately. Colton weighs just under 7lbs... he is getting soooo big. Right now we are waiting on decisions to be made by the eye doctor and neurosurgeon. Colton has an eye exam Friday to determine if he needs another surgery or not and after that they will decide if he is going to get the shunt. Once these decisions are made and surgeries are finished we are home free but right now it seems we are playing a waiting game that is driving us crazy! I have had a lot of talks with the nurses telling them that I feel like Colton is never going to get to come home and they have assured me that we are soooo close. I ask that while you continue to pray for Colton also pray for us... pray that we have patience and understanding. Pray that we stay optimistic. I ask that you do this because I find myself getting discouraged a lot more often than in the beginning of this journey. I feel like Colton needs to be home with all the people who love him... I am ready to be a "hands-on" mother. Most of all I pray for strength... and I know that the best place to turn is to God and to all of you out there who have faith and have already gotten us through so much. Thank you from the bottom of my heart.


April 17, 2008
Today, Colton is one month old (corrected). Shunt surgery is scheduled April 23rd. I pray that the surgery happens on this day and we can finally get our boy at home with us.




April 21, 2008
Colton's surgery has been moved up from Wednesday to tomorrow (Tuesday). The neurosurgeon called me this morning to let me know that his head was pretty full and they were going to need to go ahead with the surgery first thing in the morning (meaning 7:30 a.m.). I'm nervous but ready to get this step over with.

Next: Optimistic?

Splish Splash

March 19, 2008
Today, for the first time, I got to give my son a bath. He doesn't like bath time very much, but it was very fun for Mommy. Also Pops and Nana got to hold Colton today, he enjoyed that much more than bath time.


March 21, 2008
Colton had his third eye surgery today. This one was a bit more intense than the other two. They actually had to go into his eye and remove "gel" that was causing his retina to detach. I just spoke with the Doctor and he said the surgery went as well as expected, he seemed optimistic about the results but it is still a wait-and-see scenario. As of last week the plan was to put off the hernia surgery until later but a few nights ago Colton stopped digesting his food because the hernias were interfering with his digestive processes. They stopped feeding him then. Because of this he needs them fixed as soon as possible so now the plan is to do the hernia surgery next Tuesday.

March 24, 2008
Colton is four months old today!!! Today Pops and I are at the hospital for Colton's hernia surgery. The nurse called me at 6:30am and let me know that his surgery would be at 7:30am so we had to rush to get up here. As I was walking down the 4th floor hallway to the NICU, I saw Colton with the Doctors heading down to the OR. I made it just in time to walk down with him. His neurosurgeon was waiting for another patient at the elevator as we got off, he saw us and said "Hey... A familiar face." Then we joked about how much time Colton has been spending in the OR lately. Right now I am waiting for an update on how the surgery is going but I will edit this update a little later and include how the surgery went. Oh and also, Thank you to Kathy and My Mom and Dad who have taken time out of there day to spend with me during Colton's 5 surgeries... it means a lot to me and Colton.

ANOTHER UPDATE... Colton's surgery went wonderfully... he is now resting back in the NICU. They are going to keep him on heavy pain medicine tonight and hope that he continues to sleep and recover. It will probably be a few days before he gets off the vent or starts eating again. I know there were a lot of people praying for Colton this morning... Thank you, it means so much to us all. I would like for everyone to pray for one more thing. Pray that all of us remain united for him during this rough time. We have to remember to do whatever is best for him!!!

Next: Waiting Game

Trembling

March 11, 2008
Today has been a horrible day. This morning at 10:55 Colton was taken to the operating room for brain surgery to place his shunt. My family and I decided to go downstairs for a bite to eat and to calm my nerves. I took the pager the hospital gives you with me, in case they need you and you aren't in the waiting room. As soon as I finished eating, the pager went off, I knew something was wrong, this surgery was suppose to take at least an hour and it had only been about 10 minutes. I literally ran back upstairs to the OR waiting room. The lady at the front desk sent me to a small consult room. I sat there, alone, waiting for the doctor, horrible thoughts flashing in my head. Eventually the neurosurgeon and anesthesiologist came in the room. From where I was sitting their hands were at eye level, one set was clasped shut, the other set trembling. This was bad. The surgery had been unsuccessful, Colton had flat-lined on the table, they had to fight hard to bring him back. They suspected a reaction to the anesthesia. He is back in the NICU now, shunt less and resting on the vent. My heart is still pounding from the scare, but I'm thanking God the news wasn't worse.




March 12, 2008
Colton is doing better today. He self extubated himself this morning (he was on the vent due to his surgery attempt yesterday). He did fine after he pulled out the tube so they left him off the vent. He is doing good right now. He weighs 5 pounds 2 ounces.


March 17, 2008
As some of you may know, today, March 17, 2008, is Colton's due date. It is amazing to think that his actual age is almost 4 months old now. It has been a long hard road but things are going great and along the way we have been blessed with each and every one of you to be by our sides with tremendous amounts of love and support. We couldn't have done it without you. Colton has eye surgery this morning... I do not have an exact time but I am heading up there around 8. The eye doctor feels that his eyes are getting better and this laser surgery will be much less strenuous on him than the last one. Hopefully he will handle it well. The only thing we have heard about the shunt is that they are probably going to wait until he is much bigger before they even try again. If that is what they decide, he will go home before the surgery. No decision has been made about the hernia either. I think Colton really scared the surgeons when they were attempting to prep him for surgery last week. He is taking a bottle but not yet up to the amount of food he was before the surgery attempt... we will get there soon. Tonight his length was 16 inches and he weighed 5 pounds 7 ounces, a lot of that is fluid though so we should expect him to loose a few ounces in the next week or so. I will update you all after his eye surgery. Keep him in your prayers... they have done wonders! Happy Due Date to Colton and Happy St. Patrick's Day to the rest of you!


March 18, 2008
Colton is going to need a more serious form of eye surgery on Friday... his retina has partially detached in one eye and they need to operate to keep his chances up for semi-normal vision. The other eye is doing pretty good for now. For this surgery he will actually have to be taken down to the OR. I have not been given a time yet. He is recovering well from the surgery yesterday. He did not have to be put on the ventilator during the surgery so that says a lot for his lungs. Other than that, things are going good. The nurse and I went over a rather large checklist last night about all the stuff I need to know before Colton can go home. As far as I know the plan is to get his eye surgery taken care of on Monday and then get him ready to go home the next week. That is if they decide to put his shunt and hernia surgery off until he gets bigger which is the plan right now. He would go home and have to come back to the PICU at about 6 months corrected age. Now that Colton's due date has passed I should explain what corrected age is... this is the age he would be had he been born on his due date... this age gives you a better idea of where these preemies should be developmentally. For example Colton's corrected age now is 1 day old. His actual age is called just that, his actual age is almost 4 months now. Hope everyone has a wonderful day!

Next: Splish Splash