Haven't posted in a few days but wanted you all to know that Colton is still on the C-Pap. He has been extubated 1 week today, which we are assured by the doctors is a great feat. He is struggling a bit more than we'd like and he is headed back to the vent we think, but even if he goes back, the fact that he made it a week is a good sign.
Not much else eventful in the last few days. We hope all of you have a happy, healthy and thankful Thanksgiving. Our love to all of you.
Here are a few photos of Colton meeting his Great Grandpa Jim last weekend. http://www.flickr.com/photos/29664626@N07/sets/72157610236458999/
The NICU adventures of Colton Chilla as he grew and the journey of his mommy after he became an angel.
Thursday, November 27, 2008
Sunday, November 23, 2008
C-Pap
Today's update is that Colton is on the C-Pap. He started struggling a bit on just the nasal cannulas so to help him out they put him on the C-Pap. This is a mask that goes over his nose and pushes puffs of air in to remind and help him to breath. They are trying everything they can to keep him from being put on the ventilator again.
Also, Colton's nurses said they saw him having some probable seizure activity this morning. They dosed him with more phenolbarbitol and that seems to have done the trick for now. Colton will be more at risk for ongoing seizures based on his brain injury.
As for us, we are tired and wearing thin on bad news. We are still staying overall optimistic about the long term picture but the day to day grind and emotional roller coaster are beginning to take their toll. But we remind ourselves daily that what we are going through is nothing compared to the fight our little Colton is putting up. Our boy is strong.
Also, Colton's nurses said they saw him having some probable seizure activity this morning. They dosed him with more phenolbarbitol and that seems to have done the trick for now. Colton will be more at risk for ongoing seizures based on his brain injury.
As for us, we are tired and wearing thin on bad news. We are still staying overall optimistic about the long term picture but the day to day grind and emotional roller coaster are beginning to take their toll. But we remind ourselves daily that what we are going through is nothing compared to the fight our little Colton is putting up. Our boy is strong.
Friday, November 21, 2008
Happy & Sad
This is a bittersweet post. Colton was extubated yesterday (Thursday) at 4:30 pm. He is still going strong and only on nasal cannulas. We are so proud of how well he is doing on his breathing! I got to hold him today without the ventilator, oh how much easier it is. Little guy can turn his head at will and not have to worry about his tube! This is the sweet part of the post.
The other part is that Colton also had an MRI on Thursday of his head. This was a follow-up to the siezure episodes that he had awhile back. Truthfully, we didn't expect them to find anything....wrong. We were told last night that Colton has (to quote the doctors) "extensive brain injury". Of course a million things start running through our minds. We were devastated. Basically, because of lack of oxygen to the brain, Colton has an underdeveloped Cerebellum as well as ischemia (tissue damage) and infarction (death of tissue) to much of the right side of his brain. The doctors terms, again, sound devastating. What it boils down to is that we have a lot of unknowns in front of us. Will Colton be normal but with severe delays? Will he not be normal? We don't know any of the answers and the doctors won't either. We just have to take it milestone by milestone and work really hard with him to give him the best we can. Donny and I heard stories from both the doctors and nurses about kids with much worse brain scans that ended up being ok. We will hold out hope! Whatever the outcome, we will love our boy dearly and know that he is a fighter. Keep praying for him!
We went a little overboard on the pics but it is the first glimpse at his upper lip! :) http://www.flickr.com/photos/29664626@N07/sets/72157609662083178/
The other part is that Colton also had an MRI on Thursday of his head. This was a follow-up to the siezure episodes that he had awhile back. Truthfully, we didn't expect them to find anything....wrong. We were told last night that Colton has (to quote the doctors) "extensive brain injury". Of course a million things start running through our minds. We were devastated. Basically, because of lack of oxygen to the brain, Colton has an underdeveloped Cerebellum as well as ischemia (tissue damage) and infarction (death of tissue) to much of the right side of his brain. The doctors terms, again, sound devastating. What it boils down to is that we have a lot of unknowns in front of us. Will Colton be normal but with severe delays? Will he not be normal? We don't know any of the answers and the doctors won't either. We just have to take it milestone by milestone and work really hard with him to give him the best we can. Donny and I heard stories from both the doctors and nurses about kids with much worse brain scans that ended up being ok. We will hold out hope! Whatever the outcome, we will love our boy dearly and know that he is a fighter. Keep praying for him!
We went a little overboard on the pics but it is the first glimpse at his upper lip! :) http://www.flickr.com/photos/29664626@N07/sets/72157609662083178/
Tuesday, November 18, 2008
Rumors of Extubation
Colton is recovering nicely from the infection. In fact, he is doing so well that he is way down on his vent settings. Today when I went to visit, they were talking about starting him on Decadron to get him ready for extubation. Now we all know that things can swing the other direction in a matter of hours so I'll remain cautiously optimistic at this point. So we'll see how he's doing tomorrow and we might have an extubation in our near future!
Colton had a great weekend and got to meet his Great Uncle Milan and Aunt Kris who came out to visit from the east coast. Here is a picture of them meeting Colton for the first time. We love you guys and are so happy that you came to see Colton.
This weekend he gets to meet his Great Grandfather. What a neat week for Colton!
Saturday, November 15, 2008
Guess Who's Zero?
Today would have been Colton's due date, so happy zero birthday Colton!
Colton is doing better now that he's on antibiotics. The bacteria are still hanging out in his Broviac line but we are hoping that today's cultures will show improvement. We are crossing our fingers that he'll be off of the oscillating vent sometime this weekend. Pray for a fast recovery so he can start eating again!
Colton is doing better now that he's on antibiotics. The bacteria are still hanging out in his Broviac line but we are hoping that today's cultures will show improvement. We are crossing our fingers that he'll be off of the oscillating vent sometime this weekend. Pray for a fast recovery so he can start eating again!
Thursday, November 13, 2008
Poor Colton
Today hasn't been a good day for poor little Colton. I (mommy) arrived at the hospital this morning to find a lot of activity going on around Colton's isolette. He was having very low blood pressures and had a fever. The obvious suspect was infection. After some initial blood cultures that was confirmed. His feeds were immediately stopped and antibiotics ordered. They put him back on Dopamine to try and get his blood pressure up. The worst is that his blood gasses also went through the roof and he had to go back onto the oscillating vent. We feel so bad for him because it was obvious that he didn't feel well at all. He was so lethargic today. Hopefully he'll rally quickly with the antibiotics on board. We are worried about how much weight he'll lose coming up since he's not able to eat but we are crossing our fingers that it won't be more than a week or so. Poor Colton.
Wednesday, November 12, 2008
4 lbs.!
Big news, Colton hit 4lbs. 1 oz. last night. He could still fluctuate a bit but we think he's over the 4 lb. hump. 5 lbs., here we come!
Sunday, November 9, 2008
Hanging Out
Not much to report on Mr. Colton. He is still try
ing to grow. He is hanging on at 3 lbs. 13 oz. right now. No real progress on the ventilator. :( They are giving him 26 calorie fortifier in his milk so hopefully he'll start gaining even more weight. He is really having much longer stretches with his eyes open now. Here are a few photos Donny took when Colton was wide awake!
http://www.flickr.com/photos/29664626@N07/sets/72157608799391784/
ing to grow. He is hanging on at 3 lbs. 13 oz. right now. No real progress on the ventilator. :( They are giving him 26 calorie fortifier in his milk so hopefully he'll start gaining even more weight. He is really having much longer stretches with his eyes open now. Here are a few photos Donny took when Colton was wide awake!http://www.flickr.com/photos/29664626@N07/sets/72157608799391784/
Wednesday, November 5, 2008
Surgery Off
Some of you may already know most of this so sorry for the repeat, but for those of you who don't, here goes...it's been an adventurous week...again.
We were told on Monday that they wanted to go ahead and progress with the surgery this week to close the VSD. Obviously that caught us off guard because we were waiting until he got to 4 lbs. to prepare ourselves for that. That got thrown out the window. We guessed that they weren't happy with his growth but it put me (mommy) into a tizzy thinking about the aftermath of this for Colton at such a small size. So as I am learning to do, I asked to talk to the doctors and surgeon to see what the real deal was.
After digesting the fact that he was having surgery, I was then told by the surgeon that there wasn't agreement amongst the cardiologists about whether to do the surgery or not. They had a big caucus this morning and based on his growth this last week, which has been pretty good, they decided to hold off on the surgery for now. That is a big relief to us. We know he'll have to have it but the risks and the after care are much easier once he is bigger.
Speaking of bigger, he is now 3 lbs. 11.5 oz. He went down earlier this week a couple of ounces but has rebounded. We are hoping he'll keep it up and by the weekend hit 4! They are also trying to wean him off of his dieuretic, Bumax. I love it, one of his doctors called it the neutron bomb of dieuretics. Guess it is strong. lol. They are putting him on a lesser strength one as part of the weaning. Oh lord, please please please keep peeing!
That's about it from the land of Colton. We'll update you if anything major comes up or when he hits 4 lbs!
We were told on Monday that they wanted to go ahead and progress with the surgery this week to close the VSD. Obviously that caught us off guard because we were waiting until he got to 4 lbs. to prepare ourselves for that. That got thrown out the window. We guessed that they weren't happy with his growth but it put me (mommy) into a tizzy thinking about the aftermath of this for Colton at such a small size. So as I am learning to do, I asked to talk to the doctors and surgeon to see what the real deal was.
After digesting the fact that he was having surgery, I was then told by the surgeon that there wasn't agreement amongst the cardiologists about whether to do the surgery or not. They had a big caucus this morning and based on his growth this last week, which has been pretty good, they decided to hold off on the surgery for now. That is a big relief to us. We know he'll have to have it but the risks and the after care are much easier once he is bigger.
Speaking of bigger, he is now 3 lbs. 11.5 oz. He went down earlier this week a couple of ounces but has rebounded. We are hoping he'll keep it up and by the weekend hit 4! They are also trying to wean him off of his dieuretic, Bumax. I love it, one of his doctors called it the neutron bomb of dieuretics. Guess it is strong. lol. They are putting him on a lesser strength one as part of the weaning. Oh lord, please please please keep peeing!
That's about it from the land of Colton. We'll update you if anything major comes up or when he hits 4 lbs!
Monday, November 3, 2008
Fun Experiment
Here's a photo of Donny as a baby. I'm guessing around 6 or 7 months here. Do you see a resemblence to the picture of Colton below? :)
Saturday, November 1, 2008
Happy Halloween
A few pics of Colton in his football player costume...what a bruiser! He is now 3 lbs. 11 oz! Here is a link to all the Halloween pics:
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