Peace At Last

Our beautiful boy found peace at last yesterday. He was surrounded by immense love and support with all of his grandparents, his aunt and uncle and some of the most amazing nurses out there. I held him on my chest and kissed his little head as he went to be with the angels. I have never loved so deep nor had so much admiration for the strength of others in my life. While selfishly, I miss my boy to pieces, I am trying to find the lessons from his short little life. I know that I love my husband more, Colton brought us so close together. I know that I admire my parents more for the love they have given me. I know that Donny and I are blessed with the most amazing groups of friends who have picked us up and are helping us through this overwhelming time. I know that Colton was loved every single day by the care and touch of his nurses. I know that I was meant to be a mommy. I know that I look at the world through sad eyes right now but everything means so much more than it used to. I know that Colton was the greatest gift I have ever been given. I know that I have felt the love of my child.

In order to honor Colton and keep his memory alive, Donny and I would like to donate some rocking chairs and foot stools to the NICU. Kangaroo time (where we held Colton on our chest) was the most wonderful time with him where we could bond with him and for all parents in the NICU it is the most positive experience you have there. Colton loved his Kangaroo time because he could feel our skin, hear our heart beat and smell his mommy and daddy. The NICU is sorely lacking in comfortable chairs and are very short on supply. We are going to set up Colton's Kangaroo Fund to do this. If you'd like to make a donation, please send cash or a check made out to Amy Chilla and put Colton's Kangaroo Fund in the memo on the check, and we will make sure it goes toward this cause. Each chair will have a plaque on it with Colton's name. Our address is 5 Goose Pond Road, Ladera Ranch, CA 92694.

Services for Colton will be this Friday, Dec. 19 at 11am at El Toro Memorial Park. The address is 25751 Trabuco Rd. Lake Forest, CA 92630. There will be a reception following the service at the home of John and Stacie McKeehan at 8 Goose Pond Road, Ladera Ranch, CA 92694. We invite everyone who shared a part of Colton's little life to join us on Friday.

Heavy Heart

It is with a heavy heart that we write this post. As many of you know Colton has had a rough week and had many ongoing seizures. We knew in our hearts what path we were headed down. We met today with the neurologist and we were told that the damage to his brain was profound and that there was really no hope of him having any kind of quality life as you or I know it. Colton was moved to a private room this afternoon where we can be alone with him. We have opted to keep him with us for a few more days and then we will have the ventilator removed where he will go into a peaceful sleep. Colton will finally be at peace which is all we have ever wanted for him. We will treasure the four months we have had with him and he has taught us so much about ourselves. He is such a fighter and a little love. He made it to 5 and half pounds. Colton will forever be a part of all of us because each of you reading this gave a little part of yourself to him. If Donny and I don't get to each of you, know that your support and love were felt and known. We appreciate every kind word and gesture more than you all know. We will write a few more times on the blog to share some more thoughts as well as when the service for him will be. My beautiful boy loves you all, as do we.

More Seizures

Unfortunately last night and most of today so far Colton has continued to have seizures. They have switched his medication but nothing seems to be stopping them at this point. The neurologist has ordered a 12 hour EEG study where they hook him up to the EEG (brain waves) and video tape him. This is happening as we speak. Everyone seems stumped as to why he continues to seize and it is so hard for Donny and I to imagine what poor little Colton is going through. We love him so much and this just seems like torture for him. Will report later with an update.

MRI Results Are In

We got the MRI results back and they show no change. Phew! We aren't sure when they are going to do another MRI, we'll wait and hold our breath again then. As for Mr. Colton, he isn't doing too good. He's very puffy and retaining a lot of fluid. His kidneys are working fine so we aren't really sure why all the fluid. They are starting him back on IV Lasix to try and take care of the edema. He is also extremely sensitive to touch, sound and light. This is most likely from the seizures. He is having a lot of desats which means his oxygen levels go way down and his heart rate sometimes slows way down. Again, not sure why, just overall he seems to not be feeling well. He also seems to have developed an eye infection which they will treat with antibiotic eye drops. Aren't you all going to be glad when we have some good news? I know I will...

Another Bumpy Ride

Well, the last few days haven't been the greatest. Friday night Colton began having siezures again. The recurred throughout Saturday and they seem to finally be somewhat under control with lots of meds. With so many meds on board, Colton has been very very sleepy and out of it. This has hindered his breathing severely and required them to put him back on the ventilator for assistance. We are extremely concerned about what this latest set of siezures has done to his brain. He is scheduled for another MRI tomorrow, so we hold our breath and wait. Send your prayers for our little guy.

4.5 lbs.

We have to mark all the weight milestones. Colton weighed in last night at 4 lbs. 8 oz. Go little Colton!

Making Headway

Colton is making progress in small increments. He is still on the C-Pap...way to go! Dare we write that we think he may stay there? :) Yesterday when I went to visit they had him in a big boy crib. It was so fun to be able to just reach out and touch him and not go through armholes! They were testing him to see if he could keep his own body temperature. They did have to put him back in the isolette early this morning but they will try the big boy crib in another day or two. He is on the brink of graduating, he'll just have to do it slowly. Not much else to report. We are scheduled for another MRI on Dec. 8 which has us a bit apprehensive and hoping that things will stay as they are and that we won't get more bad news. Stay optimistic, right? :) I'll update again soon.