Refresh Everything

Each month pepsi is giving 1.3 million in grants to people/groups/organizations that have refreshing ideas. Each idea is voted on by people like you and in the $250,000 category, the top 2 ideas receive funding. It is a very refreshing program.

Now, I need your help. Colton has been receiving vision therapy from VIPS (Visually Impaired Preschool Services) since he came home from the NICU in May 2008. VIPS has been serving children who are blind and visually impaired for 25 years in Kentucky. Ms. Dixie (his teacher/therapist from VIPS) has been a blessing to say the least. There are two offices- Louisville and Lexington. The teachers travel most of the state to provide therapy and education to the children in their homes. Louisville's office started a preschool program to provide more services for their children with visual impairments. This state of the art facility is not only used for the preschool but also provides programs for children birth to three that are visually impaired. The Lexington location, wants to do the same for their children. The problem is their current building will not house a licensed preschool. To see this dream come true to offer more programs and services to children in the Central and Eastern areas of KY they will need to move to another facility. With your help, this new facility will provide children with an enriched educational environment that will meet their needs for hands on learning and meeting their developmental milestones.

Needless to say, this would greatly benefit the visually impaired children here in our area and you can make this happen by voting for VIPS' idea. How? you ask. It's easy! You can vote once a day (from now to Dec. 30th) by visiting here AND by texting 104721 to 73774. You can vote online as well as by text everyday. We have a great opportunity to help these children be better prepared to face a world full of challenges.

School Days

The first question I have been asked by everyone on Colton's first day of preschool... "did you cry?" NO I did not. I wasn't really sure but I didn't think I would. Like I said yesterday I am just so thrilled that he has made it this far. Three years ago he was in the NICU and they weren't sure if he would even make it through the night. Now, here he is going off to preschool. It's amazing, I am so incredibly thankful. I guess the joy trumped the tears today, I know for sure that my heart is full of it!

This morning Daddy brought out the video camera while we were heading out the door. Enjoy!

My Green Monster

I have a monster. No, not a monster in my closet but a monster none the less. My monster is green and big and hairy and ugly. My monster has a name, its name is jealousy. I'm not jealous of the things other people have, I am jealous of the things other people (mainly other people's children) can do. To admit this to you all makes me so ashamed and embarrassed, I want to stop typing, I want to turn of my laptop, pull up my cover and drift slowly to sleep. But, I CAN'T. This monster has been haunting me so badly for so long and it is very important for me to be honest and not keep this monster locked inside.

Most of you know Colton's story, he is my miracle boy. Being born at 23 weeks, 6 days is not an easy thing to do for anyone, especially a one pound fragile newborn. Because of his early birth he developed brain bleeds that eventually led to brain surgery and brain damage, this is the primary cause of his CP. Not only does his development suffer neurologically, he is also 95% blind, another disability stemming from his premature birth. Needless to say, Colton is significantly behind his peers developmentally. I knew this would be the case from the beginning, everyday people would remind me that he was born four months early and that he would be 4-6 months behind other babies born the same time as him. I was prepared for that. What I wasn't prepared for is the fact that now, at almost three years old he would not be even close to "caught up". If I had a dollar for all the times I've heard "remember, every preemie develops at his/her own pace" I would... well, I'm not sure what I would do but I would be a very rich person. I know this already but it doesn't take the sting away when you watch a baby two years younger than your child walking around without a care in the world while my little man is stuck crawling around on the floor. I've watched the children of my friends, family and even strangers develop at what seems like breakneck speeds, they are all passing us by. My green monster grows a little more each day, I feel like one day I might just explode.

I've talked a lot about "I" in this post. Yes, selfishly, I am jealous for myself. I want to be able to watch my son take his first steps someday, hear him ask me a question or just be able to communicate with his peers. I want all this for me, yes, but I want it for him 1000 times more. We head to the hospital at least once a month to visit various specialists and as soon as I take a seat in the waiting rooms Colton is wiggling trying to get down and play. Hospitals are germy, I can't imagine letting him crawl around on those floors but I see other kids smaller than him walking around freely and it makes my heart hurt. He would be so much happier walking, I know he would. I want this for him, my green monster grows even more when I think of all the things he would love to do but can't. I'm sure that two months from now, when he starts preschool, he would be so proud to walk across that threshold into the classroom that he will spend the next three years, I used to be sure that would happen, now not so much. He tries so hard but he has so many things working against him, it's so hard to watch and so horribly unfair.

I usually try to put a positive spin on all my posts but I just can't today. My heart hurts too bad. I'm sad and scared and angry and extremely jealous. I'm ashamed of my green monster but I just can't seem to shake him. At least now I am one step closer to setting him free.

Questions

I have so many questions, most which will not be answered for a long time, some may never be answered.

Questions like...

Why did my son have to be born at 23 weeks and spend the first six months of his life in the hospital?

Why did ROP have to destroy his retinas to the point of blindness? Why does he never get to see the beauty of a rose or the color of the sky?

Will he ever have a girlfriend or even a date? Will he ever get married and enjoy the pure happiness of being a parent?

Will he ever talk?

Will he ever walk?

Why us? Why HIM?

These questions, along with so many more, haunt me everyday and everyday I have to remind myself that today he is happy and alive and healthy and for today that is all that matters.

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

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

Miracle Grow

February 27, 2008
Colton weighed 1740 grams last night which is 3 pounds 13 ounces!!! Woohoo! He is 15 3/4 inches long. His heart rate drops have decreased but they are still there... when the Doctors rounded this morning they just said it was normal Colton stuff. When they tapped his reservoir on Saturday the spinal fluid came back positive for strep A so they put Colton on penicillin. So far nothing else has came back positive so that is good news... they think maybe it was from skin contact so no biggie!

February 28, 2008
Colton is doing pretty good right now. Only one heart rate drop while I was there this evening after class. The big news is that he weighed 1880 grams or 4 pounds 2 ounces... Go Colton!!! He can finally wear most of his preemie clothes... they are still a little big but not much. I also fed Colton 5 ml. by bottle tonight, he took it very well but tired easily so we decided to stop but he is improving! We take our infant CPR classes on March 14th :) We're definitely heading towards the finish line!


March 3, 2008
Last night Mr. Colton weighed 2000 grams or 4 pounds 6 ounces. All of the sudden he has decided its time to grow grow grow! He has had only a few heart rate drops this weekend and for the most part he has brought it back up on his own without any assistance from the Nurses. Nurse Heather is back today, Colton's primary, so I know he is happy about that. So are Seth and I! They are talking brain surgery to place his shunt as I type. We are probably looking at sometime this week or next depending on openings in the OR. They will have to put him back on the ventilator for the surgery because of the general anesthetic but the sooner they do the surgery the sooner we will get passed it.

March 4, 2008
The plan is for Colton to have shunt surgery next Tuesday, March 11, 2008. about it. A shunt is a tiny tube that is placed into one of the two larger ventricles. It attaches to another longer piece of tubing. This connection is behind the ear, under the skin. The longer tubing continues under the skin, down the neck and chest to the baby's abdomen where the fluid can be absorbed. I'm very nervous about this surgery but I know God is always watching out for my little boy.



Next: Trembling

Proud and Peachy

February 10, 2008
I am sick with the flu and having to stay out of the NICU for a couple days, I miss my boy so much. Luckily, Seth has been able to visit him and bring me back updates regularly. I also get to call the nurses pretty much anytime during the day, they let me know exactly he is doing. Colton is doing fine, the infection is under control.

February 14, 2008
The doctors have told us that Colton has something called Retinopathy of Prematurity (ROP). This means that the blood vessels in his eyes are growing a little different then they should because of his early birth. ROP is very common in preemies and often corrects itself without medical intervention, we are hoping that is the case with Colton. He will get visits from the opthamologist once a week to check the status of his ROP.

February 20, 2008
Today everything is just peachy! Colton was fed by mouth for the first time and he did wonderful! He sucked the bottle like a pro, guess all the practice on the paci paid off. I tried to give him another bottle last night, he must have been tired because he did not do nearly as well the second time. He now weighs in at 3 pounds, 7 ounces, I am so proud of him!

February 22, 2008
This afternoon Colton's eye doctor called us and let us know that his ROP had went from a stage 1 to a stage 3. This meant he needed to have laser surgery on his eyes asap. So, Nana and I are sitting out in the hallway at UK while Colton is in eye surgery... they took him in about 5pm and we haven't heard anything yet. The doctor seemed confident that this would decrease his chances of vision lose. Before the surgery he had a 50-60% chance of vision loss after the surgery it decreases to 20-30%.

February 24, 2008
Colton is having a little trouble recovering from his eye surgery. He had to be placed back on the ventilator about 2 hours after the surgery and is still on medium settings. He continues to drop his heart rate and is having a lot of trouble waking all the way up and bouncing back from the big event.

February 25, 2008
Our little miracle is THREE MONTHS OLD today and guess what... after worrying us all to death, he has finally recovered from his surgery (for the most part). He got off the ventilator today and is now back on the nasal cannula. Woohoo! This evening he was kicking and squirming just like he was before the surgery... I am really excited because for three whole days I didn't even see him open his eyes (he did a few times when I wasn't around the nurses said) but still it was a little scary. He's getting big too, weighing in at 3 pounds, 10 ounces, I am bursting with pride!
Next: Miracle Grow

Crashing.

Back to Colton's NICU story after the Anniversary Post yesterday.

February 3, 2008
Last night, after the baby shower Tiffany and I went to visit Colton, not long after we got there he began to crash. He stopped breathing, his oxygen saturation reached the single digits ultimately getting down to 1 with his heart rate reaching tremendous lows also. It was really frustrating to be in there during this because the Nurse was hollering that she needed a doctor and no one was coming... this stressed us both out a lot. We had to leave the room so they could work on him and before the night was over he had stopped breathing and had to be given CPR and put back on the ventilator. After running some blood tests they determined that his broviach (semi-permanent IV) had gotten infected and the infection was causing him to be sick. They are giving him antibiotics and keep him on the vent until they get the infection under control, apparently this type of infection is fairly common in preemies. This is a big turn around from how well he was doing Saturday considering he was breathing on his own with only a nasal cannula supplying his oxygen. I suppose this is just another bump in the road but I am so ready for re-paving.

February 4, 2008
Colton is still very sick, he is a fighter though. He had to be "bagged" on and off throughout the night. Still in the wake of all this bad news we have to find some good. Well, the good is... Colton weighed in at 1300 grams last night, that's 2lb. 14oz. almost 3LBS!!! They measured his length also, he is 39 cm./15 3/4 in. And right now he seems to be keeping his food down.


February 5, 2008
Our boy is still sick. This common infection is causing a lot more trouble than they thought it would. He is holding on, I know this has to be so hard on him. I'm scared and finding it harder and harder to keep my emotions in check. Most of the time I just feel like laying in bed and crying, I know that I have to be strong for him, he keeps me going.

February 7, 2008
Colton was accidentally extubated this morning and he seemed to be doing fine after his breathing tube was gone so they decided to try him out on just the Nasal cannula (the oxygen just like we would get in the hospital) and as of tonight he was still doing well on just that. He weighed 1400 grams last night... 3lb. 1oz. so he is getting up there! He is a little puffy from the infection (which they are still trying to get rid of) but most of the weight is really his. He didn't really act like he felt bad today. I am hoping the worst of this particular infection is behind us, but for now the ventilator is OFF!


Next: Proud and Peachy

Happy Days

February 2, 2008
The baby shower went wonderfully. I am so thankful for all my caring and dedicated family and friends. It was nice to have a little fun and get away from the hospital for a while. I never imagined my son would already be here during my shower but they had pictures of Colton everywhere so I was never very far from his cute little face. Of course just about everyone cried at some point during the shower but they were tears of thankfulness. I am so lucky to have such a strong son and such an amazing support system.

Next: Crashing

Cries of Joy

January 25, 2008
Colton is two months old today, I cannot believe it. He amazes me so much.


January 25, 2008
Colton is doing pretty good. He is still having a big issue with feedings... they have stopped them completely again. He is having the preemie version of an upper and lower GI on Monday... Nurse Heather said she and Colton will probably be in radiology all day Monday so hopefully they can pinpoint the problem and start fixing it. He had to go back on the ventilator for the broviach placement on the 22nd and they are keeping him on it until after his procedures on Monday... his settings are still low. He is now a member of the 1000 gram club!!! He weighed 1045 last night (almost 2lbs. 5oz.) but he is a little puffy so he might lose it tonight. Two months old equals two things. First, an eye exam. This happened on the 24th and nothing seems to be out of the ordinary, his eyes are of course underdeveloped so exams will continue periodically. Second, vaccinations. Today he got three shots and you could tell that it broke Nurse Heather's heart to have to give them to him. I had to be in class this evening when they were given but Daddy was right by his side. Seth said that he made a horrible face after the first one but by the second and third he acted like a pro. I guess with all Colton has been through, he isn't going to let a silly shot get him down. That's our little fighter!!!

January 29, 2008
Last night while we were visiting Colton, Nurse Darla decided to weigh him for the night. He weighed a whopping 1165 grams or 2lbs. 9oz. He gained 75 grams from the night before to then. It is great to see him gaining this much weight even though he is not being fed anything at the moment. He had the radiology procedures but they couldn't find out the problem with his feeding intolerance so they are going to run a few more tests over the next couple days.

January 30, 2008
The results from his tests just showed that he had a narrowing in his intestines and that was the cause for all his feeding problems. They led me to believe that this would more than likely fix itself... he still has one more test sometime today. For now, the have restarted his feeds and so far he is handling it well. He lost a little bit of weight last night but they expected this so no big deal. He still weighs 2lb. 8oz. The best news of all is... NO MORE VENTILATOR (for now). They took him off yesterday and put him on CPAP (forced oxygen). For the first time tonight, my mom and I got to hear him cry, we both teared up, I have been waiting since 12:19 pm on November 25th to hear that amazing sound.


January 31, 2008
I am very excited for this weekend. Last August my mother, grandmother and I sat down to decide on a date for my baby shower. We all agreed on the first weekend in February. Colton was not due until March 17th so that would give us plenty of lead way just in case he decided to come a little early. Boy, were we waaaaay off. This weekend they are still going to throw my amazing shower, it will just be a little different because my beautiful son has already graced us with his wonderful presence.

Next: Happy Days

Prayers Answered

January 18, 2008
Colton's Nurse last night described to me what Colton actually has going on right now with the NEC situation. NEC is a disease that can rupture the intestines and cause nasty stuff to leak into the stomach area which can be life threatening. Yesterday they found a "spot" on Colton's intestine BUT it has not ruptured yet. This is good news! But he will not be able to eat for approximately two weeks. They think that they caught this very early and things may just fix themselves with him not eating and putting that pressure on the intestines. Colton's vent settings are still low so his lungs and heart rate haven't been dropping despite his newest complication.


January 19, 2008
Nurse Heather called at 11:30 a.m. and informed us that Colton had taken himself off the ventilator. He had pulled out his tube and wasn't dropping his vital signs so they decided to leave him off of it. He is now wearing a CPAP mask, which is continuous forced oxygen. We spoke with her about an hour ago and he was still doing fine. I am heading up there with my mom and dad in just a few minutes while Seth goes to work at KSU. Also, the radiologist looked at his x-ray regarding the NEC and determined that Colton was just fine... simply having a mild feeding intolerance. They will keep him off feed for about 5 days just to be on the safe side. I am leaving now to go visit him (with no tubes in his mouth YAY!). He certainly is our little miracle and we thank God everyday for blessing us with such an amazing little boy. "And all things you ask in prayer, believing, you will receive." Matthew 21:22.


January 23, 2008
Today is my 22nd Birthday and I am lucky enough to have received the best gift a little early... on November 25th. Colton doing as well as he is right now is more than I could ever ask for. He will be two months old on Friday and I can't imagine anything on this earth that could make me happier than that! Nurse Heather and Colton made a birthday card for Mommy, he signed it with his tiny little footprints. I have truly been blessed to have the opportunity to be the mother of such a miraculous baby boy. We just left the hospital and Colton is recovering well after surgery this morning. He had a broviach (semi-permanent IV) put in. They had to make a small incision on his neck and also underneath his arm. The IV goes through his skin and is planted deeply, directly into an artery. This was something that came up very quickly, the doctors felt having to poke Colton so much was causing him too much discomfort and bruising. This will be easier for both him and anyone needing to use it. Because of the surgery they had to put him back on the ventilator but up until that point he was doing wonderfully breathing on his own. They have already lowered his settings and will continue to do so until he can be completely off the ventilator again, hopefully within the next day or so. Colton gained 100 grams last night (after loosing almost 100 since before the second NEC scare) and weighs 2lbs. 3oz. We are hoping he reaches the 1000 gram mark soon because this is a big milestone for preemies. Keep him in your prayers because I know they are working and God is performing a miracle right in front of all of our eyes.

Next: Cries of Joy

Just when you think everything is ok...

January 8, 2008
Colton is out of surgery, it was so hard to leave him and then so hard to wait to hear news of how it was going. He is in recovery now, I cannot wait to see him again.

January 13, 2008
Recovery from Colton's surgery had been easier than expected. Yesterday they extracted fluid from his brain via the reservoir that was placed during surgery. It's like an air bubble on the top of his head that they have to stick a needle into when the pressure of the excess fluid gets to high. He seems like he is feeling much better.


January 14, 2008
Nurse Heather gave us some wonderful news today, Colton's labs were so good yesterday that tomorrow around lunch they are going to attempt to take him off of the vent, she said the worse thing that could happen is they would have to put him right back on it. I am so excited, this would mean lots more time holding Colton for me. yay!

January 16, 2008
Extubation has been postponed for a short time, his blood gas wasn't good enough to be taken off the vent yesterday. Hopefully this will happen soon. He is on 12ml. of feed every 2 hours and handling that just fine, weighing in at 2 pounds 3 ounces. Yesterday was very special because I got to hold Colton for the first time since December and Seth (Daddy) got to hold him for the first time ever, it was wonderful. Heather and I tricked him, when I was ready to give Colton up, I gave him back to Heather and she acted like she was going to place him back in his bed, but at the last moment she turned and handed him to Seth. His smile was priceless. We are so blessed.

January 17, 2008
We are driving to Lexington as I write, Colton's nurse called he is very sick. They have found evidence of NEC, a fatal disease for preemies that can cause their intestines to fail. Praying fiercely.

Next: Prayers

Goodbye 2007, Hello 2008

January 1, 2008
Last night Seth and I with Colton's Nana and Pops (my mom and dad) celebrated New Year's Eve with Colton in the NICU. We had a party in the Children's Hospital waiting room, toasting in the new year with sparkling white grape juice. Seth and I made sure to blow Colton a kiss through his incubator at midnight. Colton's lungs are still a concern but he is doing much better, there is talk of taking him off the high frequency vent. The ups and downs of this whole experience are almost too much to handle, but luckily we have God on our side and he can get us all through anything.


January 4, 2008
Great news, Colton got back on the conventional vent yesterday. This is definitely a step in the right direction. He is on very low oxygen settings also. Because of this change I will soon get to hold him again, oh how I have missed that. We decided to the start the new year back in Frankfort, so we are no longer staying at the Ronald McDonald House, it is hard to be farther away from him but he is doing better and we are sure there are other people who need our room more than we do now. We are so grateful for The Ronald McDonald House and The March of Dimes, two organizations that do so much to make this difficult time just a little easier.

January 6, 2008
Colton is still doing very well on the smaller ventilator, his settings have remained low! He was resting well during our visit last night. He is 6 weeks old today!!! There are talks of brain surgery on Tuesday to put in the ventricular reservoir for Colton's brain bleed. This is a tube into the ventricle which exits the skull through the top of the his head and ends in a reservoir placed under the skin. Fluid can then be removed from the reservoir as necessary to relieve any increased pressure on the brain. Over a period of time the excess fluid resolves and the reservoir can be removed. Sometimes if the problem persists a ventriculo-peritoneal shunt is placed, a tube connecting the ventricles and the abdominal cavity, which drains the excess fluid into the abdominal cavity. This will be a hard thing for Colton to go through but Seth and I both understand how much this can help him in the long run. We are meeting with the neurosurgeon on Monday to discuss the surgery and what time on Tuesday it will be done. I get to change his diaper just about every time I am there for a "care time". Changing diapers is one of the highlights of my day literally, I'm not sure it will be that way for very long.

January 7, 2008
We just got off the phone with the NICU, Colton will have brain surgery in the morning at 7:30. Please keep Colton in your prayers, this is a very hard surgery for a two pound baby. We are all scared but hoping for the best.

Next: Just when you think everything is okay...