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.

Still Going

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/

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.

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/

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!

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!

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.

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!

Hanging Out

Not much to report on Mr. Colton. He is still trying 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/

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!

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? :)

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:

http://www.flickr.com/photos/29664626@N07/sets/72157608569907547/

Heart Surgery on the Horizon

Colton is doing well and gaining weight! As of last night he was 3 lbs. 8 oz. which puts him at exactly 3 1/2 lbs. They have him on full feeds and have been able (dare I even write it?) to put him on 24 calorie human milk fortifier so he is getting a nice amount of extra calories.

The big news the last day or so is that they are seriously considering (and sounds like they have decided) that they want to go ahead and repair the hole in his heart sooner than later. Now that the kidneys are under control they should have made more progress on the ventilator and are sort of stuck at where they are. Remember the hole in the heart is also contributing to the lung wetness. Also, his little body has to work a lot harder to grow with the hole in his heart. The doctors told me yesterday that they will be comfortable doing the surger when he hits 1.8 kilos (4 lbs.) In Colton's world, if he keeps gaining weight at the current rate it should be about a week/week and a half.

We obviously have lots of questions and not too many answers right now and personally, we are very nervous about a major heart surgery on such a little guy. As the date approaches that the surgery is on the near horizon, we'll fill you all in as we get details.

Small update

I've been hearing through the grapevine that Colton's Cavalry is getting restless with no update! :) Its been a busy last week for me as my nephew Bryant James Schaefer was born on Thursday 10/23. So strange to hold a full term baby, he felt so heavy at a whopping 7 lbs. Congrats to Brandon and Jackie!

Colton is doing well and the two big goals continue to be weight gain and ventilator weaning. They are tweaking his nutrition with various combinations of breast milk, fortifying powder, TPN and IV fats. He is getting quite the cocktail. I'll ask tonight to see if he has gained any weight but last I heard we were still hovering at 3 lbs. 5 oz. They reminded me that he has to work even harder to gain weight because of the hole in his heart.

Donny and I are on a mission to try and kangaroo with Colton every day. We try and alternate days because it requires longer hours to stay and do that. We both love it though. I actually feel proactive in his care by kangarooing.

Here is a little photo of Colton in his Halloween get up. I love this pic. P.S. ignore the IV in his head!

Here's another one that was taken over the weekend. Thanks to nurse Jami for dressing him and posing him for the picture. Colton says Hi Everyone!

Doing Better

Colton is doing better today so far than yesterday. He made some good steps last night and is completely off the Lasix now again and still peeing. He is still on Dopamine for his blood pressure but they have weaned down more than 1/2 of where they started. He is still doing relatively well on his vent settings.

Donny went to visit last night and found out that Colton has grown (finally) and is now 3 lbs. 5 oz. So we are making small strides there. The big goal now is to fatten that boy up! They have started giving him another calorie fortifier which so far he is tolerating. They still don't have him back up to full feed volume but it is important to make sure he can handle the fortifier first.

We'll update again soon!

Mr. Colton's Wild Ride

Is back. I mentioned that we had some small bouts of no peeing but he decided to really kick up his heels and stopped for about 12 hours yesterday. This was followed by the doctors having to throw everything but the kitchen sink in again. Colton had to get high doses of Dopamine both for his kidney profusion and blood pressure. He was having low blood pressure last night. He also required a blood transfusion and was put back on the dreaded Lasix drip. The cherry on top of the sundae is that in the middle of all this he also started having feeding intolerance so they had to drastically reduce his milk intake.

Good news is, he started peeing...a lot. So he is getting rid of all the fluids and did fare pretty well on his vent through all of this. We just have the long and windy road ahead now of weaning back off all these drugs that took so long to get off of in the first place. Oh and poor little baby had to get two IV's in his head last night for all the drugs...maybe he should be Rudolph the Red Nose Reindeer for Halloween? He's already got the antlers covered. OK, I needed some humor here people. :)

More of the Same

I looked at the blog and realized that it has been several days since we posted. Colton is doing well, just more of the same. We've had a couple of small no pee pee episodes but they seem to be well controlled with doses of medication now. The doctors and nurses have been focused on weaning him off the vent. He is fighting it but they are able to make small steps. He had lots of visitors this weekend. He saw his Aunt and Uncle, and Grandma and Grandpa Schaefer were in town as well as our good friends the Tans from San Diego.

Thanks to everyone who donated, walked and supported us for the CHOC Walk this weekend. It was wonderful and fun and inspiring. Thanks to Grandma Mary who came and handed out homemade cookies and to our wonderful team who woke up so early that morning to walk. Colton, Donny and I appreciate all the support! Here are some pics: http://www.flickr.com/photos/29664626@N07/sets/72157608260575491

No News is Good News

Just wanted to give a quick update on the little man. Not much to report this week. I (mommy) have come down with a bit of a cold so I've not been able to go in the last couple of days to see Colton. But from what Donny tells me and the nurses on the phone he is doing very well. They are still playing see saw with the ventilator where they wean a bit and he doesn't like it so they go back up. One of these days he'll allow it. They are still giving him a therapeutic dose of the Decadron for his lungs. We had a small bout with no pee pee yesterday but he has caught back up now. He's still eating, up to 21 cc's now. Had another eye exam and the results still show he has an immature eye (lol). Overall (or clinically as they say) Colton is doing well and really just feeding and growing this week with the big goal...getting him off the vent!

Can't wait to see many of you at the CHOC Walk this weekend. Thanks to all who are walking and thanks to all who supported us by sponsoring! It has been amazing to see your love and generosity.

Eating, Sleeping. Pooping (and peeing)

Calm on the Colton front. He's eating, sleeping, pooping and still peeing. We had a speed bump in the feeding area where he stopped tolerating the extra calories they were adding to his breast milk. So after stopping feeds for 12 hours, they let him go back to breast milk (straight up) without the calorie fortifier. This means he'll gain weight more slowly since he is getting only half the calories they want him to. Other than that, the big focus is weaning off the vent. They have made some baby steps in that direction. His chest x-rays are looking a bit better and we have finished the course of Decadron. My guess is he'll need a second course but we shall see.

In the meantime, more pics for your viewing pleasure:

http://www.flickr.com/photos/29664626@N07/sets/72157607975114472/

Super Cute

New photos of Colton. He's in one of his preemie shirts. :)

http://www.flickr.com/photos/29664626@N07/

3 lbs!

Not much to report today except that I have passed the 3 lb mark! Still doing good on the Decadron and weaning on the ventilator. Still eating and pooping. :)

What A Difference

A day makes. After receiving the Decadron for his lungs last night Colton has had a vast improvement. He is off the oscillating vent and back on the regular one, recieving good blood gasses and still (knock on wood) peeing. He is still feeding for now and they have him on antibiotics as a preventative measure while waiting for the blood cultures to come back. They may have to stop his feeds if he has infection but for now he is still getting his milk shakes. :)

Lungs, Kidneys & Possible Infection...Oh My!

Well we had another doctor meeting today and we have some good news and some not so good news. Colton is doing better on his kidneys. As of time of this post he is still off of the Lasix and still peeing. It seems as though he is on a good path and we might be seeing a little bit of maturity coming out of them.

On the not so good side, Colton hasn't been maintaining a high enough temperature today. They don't know if it is because they were in his isolette so much or if he truly has a low temp. Apparently preemies can show signs of infection from both a fever or a low temp. So they did an infection screen today and we'll see what comes back from that. Also, in the doctor meeting they let us know that Colton's lungs are looking sick. Now that he is making enough urine to get rid of the fluid in his body, his lungs should be clearing up and they are not, they are getting more wet. The doctors explained that because he has had so many episodes from the kidneys that the lungs are now paying the price. They are going to try a type of steroid on him to see if that will clear up his lungs. He is still on the oscillating vent and is on really high settings meaning he is needing a lot of support. :( Hopefully the drugs will work in the next few days and we'll see some difference.

CHOC Walk Update: For those of you that are participating in the CHOC Walk, you need to pick up your wristband prior to the day of the walk. Please go to http://www.chocwalk.org/pages.cfm?id=81 to see the different locations. They have a check-in this Friday the 10th at the Shops at Mission Viejo from 2:30pm until 8:30 pm which I will go to. If you would like me to pick up your wristband and info, please email me at amy.c@cox.net before Friday and provide me with your Registrant ID and password. I'm not sure that I can do this, but will see if they will let me pick up for other people. :)

The Dance is now a Jig

Things are moving at a slightly faster pace I now like to call the pee pee jig. :) Since we last posted Colton has been on and off of the lasix twice and on and off the oscillating ventilator twice. He pees a lot and then stops. The doctors chase his kidneys and then he over-pees. They pull back on the meds and he stops peeing. I actually had a doctor tell me today that they have never ever seen a baby so dependent on lasix. Oh my little boy is giving everyone a challenge already! As of the time of this post he is peeing well but still on the oscillating ventilator. He is off the lasix (for now).

On a more positive note, he is doing well on his feeds and is up to 1/2 oz. every 3 hours. And he weighs 2 lbs. 14.5 oz. Almost 3 lbs!

The Great Pee Pee Experiment is Over

Well, we knew the other shoe might drop and it did last night, kind of. The big pee pee experiment failed. They stopped the Lasix completely as of yesterday at 2pm and gave him extra Saline. Colton stopped peeing (surprise) and the extra fluid in his body went straight to his lungs. This caused his blood gasses to get really high. They tried bagging him to get the gasses down but ultimately had to put him back on the oscillating ventilator. We are hoping that this is a temporary measure until his blood gasses are back in normal range. They re-ordered the Lasix to make him start peeing. So, as the doctors say, we are chasing the kidneys. Its disheartening to take such big steps backwards but its what's best for Colton.

Start doing the pee pee dance again...

For our friend Donna, who's son Nicholas is in the hospital being treated for Leukemia, say some prayers also. He is getting some major news on his progress today. Donna....here is a photo for you!

Bake Sale

Just a quick entry from Mommy that if you live in our area and have a sweet tooth, come out to our bake sale this Saturday! We are going to be at the soccer fields next to Wagsdale Park (the dog park) starting at 8am. All net proceeds will go to sponsor our CHOC Walk team. Tell everyone you know!

From Crown Valley and the 5, turn right on O'Neil, make a left at the Cecil Pasture light into Wagsdale Park parking lot. Follow all the people. :)

Mini-Graduation

Today was a really busy day for me. Mommy came to visit around 10:30 this morning and met with my developmental nurse. She showed mommy what excercises she could do with me to help my leg and hips develop properly. It will also help with my stiffness, which has gotten much better but is still there a little bit.

Mommy got to kangaroo with me today which was really nice and while she was holding me they switched my bed! I had a mini-graduation into a new isolette. They needed my special isolette for a sicker baby and they say that I am ready for the next step. Yay me!

They are trying a new expirament with my pee pee meds. They are giving me more of the Bumex (sp?) and seeing if that will allow me to get off of the Lasix drip. Mommy and daddy are hoping that this doesn't mean that I'm going to stop peeing, but we shall see.

Photo Session

I didn't have much to report today. Still doing the pee pee dance a bit and am now receiving 5.9 cc's every three hours of food. Yum! The NICU is pretty chaotic the last few days as I have a bunch of new roomates...maybe the stock market crash is putting people into labor? (Good theory Auntie Stacie)

So, to keep you all entertained, Mommy took some new pics today of me while I napped. Mommy and daddy think that I'm getting a little chub on my cheeks. Care to weigh in?

Here are the photos: http://www.flickr.com/photos/29664626@N07/sets/72157607618689575/

Note from Mommy: Some of you probably notice the cool new artwork at the top of the blog. A big thank you to Rick Brotherton for creating that for us. It will be on our banner and t-shirts for the CHOC Walk. If you need some photos or graphic design work, check out Rick's website.

The Colton Dance

Sorry its been a few days since I posted. I've been having some quiet days and enjoying the rest.

I have my own dance now according to the doctors. They are still scratching their heads because I'm still doing the pee pee dance off and on. I'm not being as dramatic as last time but I'll still stop peeing for about 24 hours and then they'll get me started again. Everyone is getting tired of me doing this but gosh, if I knew how to stop, I would!

I'm still eating at the milk buffet and tolerating my feeds well. I'm up to 4 cc's every three hours and eating it all up. Hopefully they can keep that going for me and in a couple of weeks they can even add calories to mommy's milk.

I had my first eye exam to test for Retinopathy. They diagnosed me with "immature eye"...go figure. Well, that's about all to report, going to take a nap now!

New Photos

Not much to report today so Mommy took some new pictures of me for you all to enjoy.

http://flickr.com/photos/29664626@N07/sets/72157607481527641/


Sponsor my Mommy on the CHOC Walk at https://www.chocforms.org/chocwalk/2008/sponsor.cfm, select "Sponsor a registered walker, and type in amyc1225.

Kickin' Up My Heels

I decided to kick up my heels a bit this morning since we've had some quiet days. I had some bad blood gasses early this morning and they switched me back to the oscillating ventilator. I totally hate that and my blood gasses shot the other way so they decided I could go back on the regular vent. I also stopped peeing a tad too much and they started my lasix drip again. Mommy made a joke with the doctor that I would be bringing lasix with me to first grade in my backpack. But I'm back to peeing again so I bet the doctors will pull me off my drip once more. They are all used to me keeping them on their toes. I am still getting fed which is good because I'm reaaaally hungry! Mommy couldn't hold me today because of all the action but maybe tomorrow. Talk to you all soon!

Sponsor my Mommy on the CHOC Walk at https://www.chocforms.org/chocwalk/2008/sponsor.cfm, select "Sponsor a registered walker, and type in amyc1225.

Mmmmm...Lunch

I'm back! I'm feeling pretty good again and I'm just chilling out in my isolette. Not too much to report today except that I got lunch! My nurse Jami gave me my first meal in many weeks. She checked my tummy at three pm and I hadn't digested all my lunch so she put it back in. We are waiting to see if I digested more of it by now. Mommy and daddy will call in and get a report before bed tonight.

Sponsor my Mommy on the CHOC Walk at https://www.chocforms.org/chocwalk/2008/sponsor.cfm, select "Sponsor a registered walker, and type in amyc1225.

Good Things Today

Mommy has lots to update today. We think (hope) Colton will be feeling well enough in the next few days to resume his posting duties. He has continued to do well on the regular ventillator and is down to breathing room air most of the time. He has been weaned completely off of all his blood pressure (to keep it up) medication and is down to getting the dieuretic medicine every 6 hours. I have a feeling they will decrease it again today.

Because he is off of his blood pressure meds we were able to kangaroo with him today. I held him for 2 hours and he did great, not one spell. It was so nice to hold him, it has felt like forever since we were able to. Hopefully Daddy will get to kangaroo him tomorrow.

They also put a feeding tube back in him and will begin the very very slow process of seeing if his belly will tolerate food. They will give him a minute drip of breastmilk tomorrow and see how he reacts. These are all such good things and we are just holding our breath to see if he holds steady. Go Colton!

Sponsor Amy on the CHOC Walk at https://www.chocforms.org/chocwalk/2008/sponsor.cfm, select "Sponsor a registered walker, and type in amyc1225.

2.5 Lbs & Growing

Well we've gained a little bit of weight. Daddy really wants Colton to be able to start eating but all in good time. He has clearly proven to us that everything is to be done in Colton's time and on his terms. There is no rushing this little guy.

When I walked in today to the NICU the big news of the day was that we met our weekly goal! They had moved him off of the oscillating vent back on to the other vent. We are really hoping that his blood gasses continue to be good and that we can keep him on this vent because he seems much more comfortable on this one. I gave him a little hand massage today to work on him (physical therapy) and will continue to do so mostly because I feel like I'm actually doing something for him!

The other big news of the day is that he was approved for a Broviac line. Colton's poor little feet are really banged up from all the blood draws they have had to do. The Broviac is a central line that will allow them to draw blood, administer drugs and even (don't ask me how) be able to provide more nutrition to him. This is a surgical procedure which they will do today or tomorrow on him. They go in through the jugular artery and suture it to him on the outside. Sounds gross but will save him lots of pokes and sticks in the long run. And I am personally for anything that will get him more nutrition! That's about all to report today. Talk to you all tomorrow.

Sponsor Amy on the CHOC Walk at https://www.chocforms.org/chocwalk/2008/sponsor.cfm, select "Sponsor a registered walker, and type in amyc1225.

EEG Results & Fashion Show

Today I got to speak to the Neurologist (lucky timing on my part) directly when he was examining Colton. I was told that the EEG did pick up ongoing seizure activity. As the neurologist explained Colton is having smaller seizures even though to the eye we aren't seeing them. Keep in mind that the EEG was done almost 3 days ago now and I (mommy instinct) believe that physically he is doing better. Of course my first question was how bad is it and can we expect lasting effects. And of course the answer is "I don't know" and "its too early to tell." But, overall the neurologist seemed pretty upbeat. He believes, as did the neonatologist, that these seizures started with low glucose levels caused by the renal issues. He also said that it is encouraging that they do not see any brain bleeds or other physical brain abnormalities in the ultrasounds they have been conducting. He wants to repeat another EEG in a couple of days and then also do an MRI once he is off the oscillating vent. He said a lot of babies grow out of the seizures and he is hoping Colton is one of them. Strangely, I walked away feeling good and optimistic. I hope that is mommy instinct kicking in!

I have to give a shout out to our nurse Cindy. She dressed Colton in his first outfit today. Dang I wish I had my camera! One of my fabulous clients in Louisville, Lindsey & Eric Ronay of ECO-CELL, sent Colton some micro-preemie clothes and he finally got to wear one today!

CHOC WALK NEWS - OK, we have figured out a bit more on the CHOC Walk. If you login to your account on the CHOC Walk website, you can go into a section that says "change my sponsorship goal". This is where you can put it down to $50 if you want. So best we can tell you can either raise the $50 or pay it out of pocket. Our team is already ranked #26 for the amount of money we have raised so far. Keep it coming everyone and thanks for the hard work!

Sponsor Amy directly at https://www.chocforms.org/chocwalk/2008/sponsor.cfm, select "Sponsor a registered walker, and type in amyc1225.

Brain Mystery

Colton is doing well weaning off of all of his drugs. Still peeing, still weaning off of the oscillating vent. The new mystery on the table is his little brain. He has still had a few intermittent seizures and his arms and hands are very stiff still. They (the doctors) say they are concerned because they don't typically see this in a baby of his age nor should he still be having these symptoms since all his levels are under control. They did an EEG (brain waves test) on him yesterday and we are waiting for the Neurologist to read it and get back to us. We are really hoping that nothing shows up on this because if something does, it won't be good. Donny and I are holding out hope that this is a temporary condition that will reverse itself in time. We'll keep you posted as we find out more.

Update on the CHOC Walk: Several of you have asked me and I found it rather confusing myself about the amount of money you commit to raising when you sign up for the walk. I have a call into the CHOC Foundation but here is how I interpret it as of now. When you sign up you are committing to raising $100. This covers your walk fee and raising $50. If you do not raise it, you can still do the walk but you will have to pay the walk fee of $50. Also, to families with kids: kids under 2 are free but all others are bound by the same $100 that adults are. We would love to have entire families walk but we understand if $400 and up starts to seem like a steep number! Please read everything very carefully and I will do my best to clear up issues/questions as they arise.

Feel like skipping the walk but want to sponsor me? Click here: https://www.chocforms.org/chocwalk/2008/sponsor.cfm, select "Sponsor a registered walker, and type in amyc1225. That is how you can sponsor me directly! Thanks for the support!

Talk a Walk for Colton

Donny and I have heard time and again through this process that people want to do something for us...well, the time has come that we have something you can do! We just heard about (from our good friend Sarah) the CHOC walk on October 19th. CHOC is Children's Hospital of Orange County, which is where Colton has stayed at both hospitals. This is really an amazing facility and we'd like to invite you all to participate in helping raise money for this great hospital. The support services they have alone are priceless. We have formed a team named Colton's Cavalry and will all be walking together as a group. I am the captain and Sarah Koclanis is the co-captain. Here is our website for more details or to sign up:

http://www.chocforms.org/chocwalk/2008/Coltons_Cavalry/

UPDATE: When you sign up make sure you list your team as Colton's Cavalry not Colton's Calvalry. I mispelled it the first time and am trying to find a way to get the latter deleted.

UPDATE #2: Found a good FAQ page that answers a lot of questions about the walk. Talks about times, route, kids, etc. http://www.chocwalk.org/pages.cfm?id=65

Please sign up to walk, or if you can't walk, please donate on behalf of our team. If you are interested in participating you can either sign up directly on the website above or email me at amy.c@cox.net. We are going to try and get T-shirts made up for our team so please indicate your t-shirt size in an email to me after you have signed up. We are also thinking about having a bake-sale to raise money at Donny's work so if you are interested in donating a cake, pie, cookies or other yummy treat email me also.

This is very important to Donny and I (as well as Colton) so we hope to see you there! Any and everyone is welcome!

Now for an update....Colton is still pee-peeing. They have decreased his meds and are hoping to continue to do so. He has gotten a lot less puffy since so much of the fluid is leaving his system. He is still on the oscillating ventilator and we really want him off of it soon because he clearly hates it. He is doing well weaning off of it, so we are hoping in the next few days he can go back to the regular ventilator.

The nurses (as well as us) noticed over the last couple of days that his poor little legs and feet were extremely stiff. He is pointing his feet as if he were a ballerina on point shoes. Doctors call this "increased tone". They have told us that this could be a residual effect of the seizures or we could be looking at something more. But again, he is so little that they won't be able to diagnose or do a neurological assessment for at least a few weeks. He is showing slight improvement in his tone meaning things aren't quite as tight and stiff.

Big goal this week...get off the oscillating vent! Maybe we can do a breathing dance? :)

The Floodgates Hath Opened

Colton is proud to report over 60 mL since 6 am this morning. Way to goooooo!

Keep It Up People

Donny and I called the hospital this evening and Colton had made 3 mL of pee pee. Not much but its something significant which we hope hope hope means that the kidneys are starting to wake up. Whatever you all are doing - dancing, praying, thinking, anything - keep it coming. Your force is powerful and your love is grand. We love you all!

The Tiniest Bit of Hope

And by the tiniest, we mean tiny. Colton's kidneys this morning produced a minute amount of pee pee. He hasn't made anymore today and the poor guy is really starting to look too puffy (all the fluid is in his body tissues). We had a good meeting today with the neonatologist and one of the cardiologists. Didn't come away with too much insight we didn't already have, but nice to know we are on the same wavelength and for them to put a face to the family of their patient. I think it personalizes the process for them a bit, which I like. Nothing else really to report. Just keep doing the pee pee dance. It worked a little this morning, now just need it to REALLY work.

No Pee Pee

Thought we'd answer the question of the hour. No pee pee as of 7am this morning. :(

Square One?

The title of this post seems to be where we feel like we keep landing...square one. After I posted this afternoon we spoke with more doctors and they have now once again ruled out infection putting us back to square one on the renal failure issue. And, as we were leaving, Colton decided to kick up his heels again and he had another siezure. The docs immediately gave him more meds to calm the siezures and as of time of posting tonight he hasn't had another one. The theory behind the siezures was a low glucose level or unbalanced electrolytes, of which he has niether. Again, square one and a lot of "we don't knows." We are exhausted and can only imagine how tired our little man is feeling right now. Going to try and get some sleep and prepare for the roller coaster that will be tomorrow.

Good Thoughts Are Working

We are definately not totally out of the woods but Colton's siezures are under control with meds. He is sedated and also under pain meds (for the oscillating vent). So he looks peaceful and relaxed now which gives us much comfort knowing that he is comfortable now.

The day is going uneventfully (thank goodness) for now and we are all just waiting for some pee pee to come out of that catheter tube. Maybe everyone can do the pee pee dance on Colton's behalf? :) We are still considered to be in a critical stage and I know we keep talking about it, but everything really is hinging on him starting to make urine.

On another note we are also waiting for some cultures to come back. A recent discovery on a test makes the doctors now think that he might have an infection in his PIC line (the line that all the IV's hook into) which would finally give us an explanation for the ongoing renal issues. It doesn't help us where we are now but having an answer as to why somehow makes us feel better. If the new cultures come back positive then they will take out the PIC line and replace it with a new one.

Donny and I also want to take a moment and thank everyone for the prayers and concern. We never knew how lucky, blessed and loved we were. It truly uplifts us and makes a hard situation bearable. We love you all and from the bottom of our hearts, thank you.

Think Good Thoughts

Donny and I are writing this from the hospital. As some of you know already, Colton took a bad turn last night. After being on the oscillator vent for most of the night, he began to have siezures. They are giving him medicine to try and control them but they continue, although decreased. He has still not produced any urine and we are maxed out on meds for that. We need all your prayers today to help our little guy. Please send him your love.

The Pee Pee Dance

No, this isn't the pee pee dance you are thinking of when your little toddler starts to wiggle before needing the potty. Colton's pee pee dance is the starting and stopping of making urine!

Last night Donny went to the hospital and Colton was making urine which was good. They decreased the medication helping him urinate down to a doseage rather than a constant drip. Well, guess what? I called this morning and Colton had stopped making pee pee again. When that happens he has a chain reaction where he starts retaining fluid all over his body including his lungs. When the lungs fill up, he needs more help on the ventilator.

The ventilator is great for helping Colton breathe but the more they turn it up to help him the more pressure it creates. As with everything on a preemie, the balance is very important. Colton has reached the point today where the ventilator is high enough that they start to worry a bit about stretching out his lungs too much so they are switching him to a different kind of vent called a High Frequency Oscillator. Here is a description of it:

High Frequency Oscillator - When a conventional ventilator fails to provide an adequate amount of breathing support or when we become concerned that the conventional ventilator may be causing additional harm to the lungs we may change to a special type of ventilator called a high frequency oscillator. The oscillator ventilator provides constant pressure to the baby’s lungs that keeps them inflated with air. It then vibrates very rapidly which can often be seen by watching the infant’s chest wiggle.

He will stay on this until the fluid clears out enough to be safely put back on the regular vent. Thus goes Colton's pee pee dance.

The Kidney Mystery

Colton is still not feeling totally well so this is mommy reporting in again. Donny called the hospital late last night and we found out that he is making pee-pee again so that is good, but we are still left with the underlying question, why does he keep having kidney problems?

I went to the hospital today and the nurse told me he was running a low-grade fever...of course indicative of infection whice we have been assured time and again he doesn't have. I met with the doctor today and asked several questions. Here are the answers (or non-answers) we recieved:

1) We've now ruled out that the Captopril is the cause of kidney failure (note: renal failure in infants is totally different than in adults. Its not a permanent condition nor does it have to be fatal like in adults) since he is no longer on the meds. Why is he having failure again if we have no infection? I was told that now that they have ruled out infection that they are assuming that there is a mechanical reason that the kidneys are not getting blood (blood is what makes the kidneys work). What can the mechanical reasons be? Well that is the mystery they are trying to determine. A mention of the VSD was made as a possibility and they have ordered another eco-cardiogram to investigate further.

2) I also asked about the extebation and what they were thinking in terms of taking him off the ventilator again. They will try once the kidney issue is stabilized. They are going to be a bit more cautious this time because they don't want to have to put him back on the vent again if he fails.

3) I also asked about feeding. They will start feeding him again once the course of antibiotics are finished which should be in four days.

That's about all I have to report, we don't really know much more than we did yesterday but he is making more pee-pee now because of the medicine he is receiving but the mystery as to WHY this is happening is still there. Up to the docs to solve it!

The Preemie Roller Coaster

Colton is taking a much needed rest today so mommy will report in. Everyone has told us that preemies will take you on a roller coaster ride and boy they weren't kidding. Just when you feel like you get your footing and are taking some steps forward, they throw you for a loop...

Donny and I were awakened to a phone call from the hospital at 2:30 in the morning last night. They called to let us know that Colton "failed his extebation." Meaning that they had been monitoring his blood gasses and they had started a downward trend. The blood gas measures the CO2 in the blood and Colton's was getting too high. They tried the CPAP for a few hours before the resorted to re-intebating him and putting him back on the ventilator. In my sleepy haze I asked what the next steps were and they said they will leave him on for a few more days and try again when the feel he is ready. They did suction his lungs and they are still very wet.

I called this morning to check in on him and they said that he has had a restful night/morning and didn't have any more spells or desats since he's been back on the vent. At least our little guy is getting rest. I was also told that his urine output is down so they have put another catheter in to monitor that as well. Seems like when one thing goes wrong they are all interconnected. I am glad that he is resting comfortably but hate the idea that he had to go through all that last night. Poooooor little man. We'll post again this afternoon if there is any news updates after we go to the hospital.

I Showed A New Talent Today

Well, not only am I still doing well on my breathing, but I displayed a new talent when mommy was holding me today....I completely turned my head. Grandma Judi and Grandpa Russ witnessed it. I picked up my head and turned it totally from one side to the other. Good grief everyone was excited. :) In fact, I did it again for the nurse. Now everyone is telling me that I'm too young to do this but I don't really listen, I do what I like.

Not much other news but I think turning my head was enough today. Daddy will come to visit tonight, we'll see if I do my trick for him. Talk to you tomorrow.

I'm Freeeeeeee...mostly!

Big news everyone....wait for it.....I've been extibated! No more ventilator for me. They took me off the ventilator at 1:20 pm today and much to mommy's surprise when she showed up for a visit, I only had nasal cannulas. Nasal cannulas are the little tubes that go in your nose to give a little extra oxygen.

Now, mommy and daddy had been told that I would be wearing a CPAP when I came off the ventilator which is a mask and a little bit more of a setup but for some reason the doctors thought I was ready to go straight to cannulas. So....its still early to tell but I am doing well so far off the vent. They wouldn't let mommy touch me when she came because it was too soon after they messed with me but when daddy comes tonight hopefully he can hold me.

This is a great step forward and mommy and daddy are cautiously optimistic and hope that my breathing stays solid enough to keep me on the nasal cannulas. I'm working hard!

Still Onward and Upward

Not much new to report (thank goodness). Colton continues to do better and better. His urine output is more normal now and he is back down on the ventilator settings almost to where he was before. The doctors and nurses haven't completely come out and said it but seems like the culprit was most likely the Captopril. They will do a final belly xray tomorrow and keep him on the antibiotics for another few days just to be safe. For now we are just relieved that the immediate crisis seems to be over. Colton will hopefully feel well enough tomorrow to resume his dictation duties to mommy for the blog!

Over the Hump?

Donny went last night to the NICU to visit Colton and had a chat with the Dr. Seems he is doing better and all indicators are pointing to the fact that he seems over the hump of this speed bump. They can't find an infection, hooray! Kidneys are functioning well again, hooray! The only thing left to examine is the belly ultrasound from yesterday.

I'll post more later but wanted you to know that there was positive news. :)

Time To Solve the Mystery

This is mommy reporting in because Colton is too sick to chat today. He had a rough night last night with the nurses unable to resolve the pee-pee problem. I recieved a boatload of information this morning and will do my best to disseminate to all of you. So here goes:

1) VSD - the echocardiogram came back consistent with what we already knew. The VSD is still small to moderate. No news there.

2) Renal failure - as of last night he was in renal failure. They gave him Lasix (diuretic) and a bunch of saline to try and up his fluids. This morning he pee-pee'd 18mLs which I am told is about what he should output in an entire day. So now we are on the opposite end of the spectrum where he is peeing too much now. They are still unsure of why this happened and are trying to figure out. It could be because of the start of feeding him or because of the Captopril they started on Sunday (heart medication).

3) Intestines - I was told that when the kidneys stop profusing (making urine) there is no blood supply to the kidneys. In lieu of blood to the kidneys it goes to collect in one of two places, either the brain or the belly. They did a head ultrasound this morning and the scan was clear. They also did a belly x-ray and while they said nothing jumped out as abnormal, it didn't look totally normal either. They will do another series of belly xrays and ultrasound this afternoon.

4) Infection - they are worried there might be a start of an intestinal infection although his blood work isn't showing anything. They are watching for pockets of air in his intestines which could be indicative of bacteria producing gasses in his intestines. For now they have him on a high-powered antibiotic as a preventative measure.

5) Balancing act - right now the course of action is a lot of tests and monitoring. Colton has the lead right now and the treatment will follow suit. They need to keep the balance of sodium and potassium up since he is peeing so much. The ventilator settings are way up as he is needing a lot of help breathing right now as well.

Keep the prayers up, he really needs them now. As a mommy, I just want to hold him and make it better, but we are on restriction from that now too. Send all your love to Colton!

Backwards Day

Mommy and daddy came to visit today and I had to give them a not so good report. Overnight my urine output drastically decreased which makes the nurses worry. They put a catheter in me this morning to try and get a urine sample but nothing is coming out. They are checking for infection and some other things and have done a blood screen and a renal ultrasound. They have stopped feeding me until they can figure out what is going on because I'm not digesting my food either.

My last chest x-ray also shows that my lungs are still very wet so they have started me back on Lasix (a diuretic for my lungs) and Captopril (helps my heart have to work less to pump blood). They think this is the VSD causing all of the lung problems.

So, mommy and daddy were not allowed to hold me today either, which made all of us kind of sad but it is for the best right now. Mommy will call into the hospital later tonight and see if any of the test results are back in.

On a happy note, I pooped (for real) since I've started eating and I now weigh 2 lbs. 2 oz. New pictures for today....we got a lot with my eyes wide open! http://flickr.com/photos/29664626@N07/sets/72157607062396684/

Quiet Day

Today was a quiet day for me. Daddy came to visit me in the morning but he didn't get to hold me this time. My blood gas test wasn't as good as they would like it to be so they held off. Mommy came to visit me later in the afternoon and my second blood gas was better so she got to kangaroo with me. She held me for two hours again. I didn't do quite as good this time as yesterday. I had a couple of "spells" as the nurses like to call them where I forget to breathe and all the alarms go crazy. The nurses are teaching mommy how to push on my back and shake me to wake me up and get me breathing again. They say I'll do this a lot more as I start to wean off the ventilator. I'm so young that I get really comfy and fall into such a deep sleep that my brain forgets to tell me to breathe. Oops. Well, I'm going nighty night now.

I Got Held

Today was such a big day for me. The most exciting thing that happened was mommy got to hold me for TWO hours. That's right, for the first time in almost 2 weeks that I was held. My UV lights got to be turned off and I was doing well enough that they decided to let me start kangaroo care today. That means I get to have skin to skin contact with mommy and/or daddy. As a matter of fact, daddy is at the hospital right now and mommy is hoping that he can kangaroo with me tonight. Mommy was so happy and relaxed holding me that she almost fell asleep a couple of times. (update: Daddy did get to kangaroo!)

The cardiologist also came by today to examine me. He told mommy that the VSD (hole in my heart) is a moderate size and they need to just wait and see for the next couple of weeks to see what it does. If it proves to be a problem for me (like I can't grow) then they will put a band around my pulmonary artery to restrict blood flow and relieve pressure on my lungs. So I will stay at this hospital for probably another couple of weeks before we make any decisions about moving me back to the other hospital. Mommy and daddy still have a lot of driving ahead of them.

The best news for me is that they started feeding me today too. I had two feedings while mommy was visiting me today. They are starting small to make sure my tummy can handle it but so far so good.

Wow, what a big day for me! Here are some more photos for you all to look at: http://www.flickr.com/photos/29664626@N07/sets/72157607023620220/

UPDATE: I have a couple of hilarious photos of Colton the day of his surgery. His tongue sticking out was the cutest thing to me. These are courtesy of Grandma Mary. http://flickr.com/photos/29664626@N07/sets/72157607027328475/

Doing Well

Today is a good day. I've woken up from my surgery and am back to my normal self. My oxygenation is good (I'm on "room air" which is what all you people in the outside world breathe) and they are weaning me just a tad off the ventilator. My lung secretions are clear and I am needing less suction. I'm hearing rumors that they might finally try and give me few drops of food tomorrow...mmmmm...I'm hungry!

Mommy got to change my diaper again today and she learned how to clean my eyes and my mouth. My nurse Jami also tried to give me a pacifier for a bit but I really wasn't sure what to do with it. I kind of licked it and decided this wasn't for me...yet. Jami is going to make me practice to get ready for real sucking later on.

Mommy took some more pics of me today. She actually caught a few with his eyes open. Click here to see them: http://flickr.com/photos/29664626@N07/sets/72157606999875844/

PDA Is Closed

It's 4pm and mommy is writing this post instead of Colton. Reason is, Colton is a little sleepy still from his anesthesia. In fact, his little tongue is kind of hanging out the side of his mouth. It really is very cute. His Grandma Mary took some pictures of it so hopefully we can post them later.

Colton did very well in his procedure today, all was very routine. Now we just wait for him to see what he'll do over the next few days. We have been told not to expect night and day changes overnight, that it will be a slow progression to weaning him off the ventilator. Donny and I just feel really relieved that this part is over and that we can now move forward with his development, breathing and feeding! Shouldn't have too much more to post today but wanted to let you all know that it went well and Colton truly appreciates all the phone calls and thoughts and prayers. Keep em coming, they are working!

My New Hotel

My ambulance ride went well and I arrived at Big CHOC just fine. Mommy and daddy came to visit me tonight and talked to all the doctors and our new nurse. They told me that they like the other hospital waaaaay better so hopefully they can get me transferred back when this surgery is over. The doctors told us that my surgery should happen tomorrow (probably in the afternoon) so I'm sure mommy will give a report then. In the meantime, good night and sweet dreams!

Moving Day #2

I'm officially taking the BIG ride today to BIG CHOC over in Orange. Overall I'm still doing well although things are slightly more complicated now.

All the tests showed that my PDA didn't close up, it did make a little progress but it isn't totally shut. Also the echocardiogram showed something new that they hadn't seen before. They saw another stream of blood flowing through my heart the wrong direction. Upon closer inspection they have diagnosed me with Ventricular Septal Defect. Basically, I have a hole in my heart in one of the ventrical chambers, allowing blood to flow the wrong way in my heart. This isn't anything they can fix right now because I'm too small for a "real" heart operation and sometimes it closes up with age. They will watch this and see how the PDA fix affects me.

So, right now I'm just waiting for the transport team to come and get me and take me for my ride. Mommy and daddy will come to the new hospital tonight and start learning the lay of the land. Not sure when my heart procedure will be, if it will be tomorrow or Thursday, all depends on how busy these new doctors are. We'll report in later tonight and let you all know that I made it safe up to Big CHOC.

Two Steps Forward, Two Steps Back

Hi all, sorry to have not posted yesterday but it was a really busy day for mommy and daddy. Lots to report so hopefully I can remember it all. Here goes...

I was being weaned a bit off the ventilator but we had to go back up again on that and my oxygen levels because my lungs are really full again. They think the move across the NICU stirred everything up in there. My carbon dioxide levels are also showing up too high when they take my blood gasses. This means that when I am exhaling I'm not getting rid of my own carbon dioxide. Also my red blood cell count is down (the nurses are saying its because of all the blood tests and because I still have some blood in my lung secretions). My nurse Sandy (I love her) is going to give me some packed red blood cells today (like a transfusion but the red blood cells are much more concentrated than normal blood). Overall, this should make me feel much better and respond better to the treatments I'm getting.

Now for the big task at hand. Getting my PDA (lung/heart tube) closed. As you know, they've been giving me the Neoprofin. They finished my first course yesterday and took an eco-cardiogram. Too bad, didn't take. So they have started me on a second course of the Neoprofin and they will finish it tonight. I have another eco-cardiogram scheduled for tomorrow morning to see if any progress was made. While mommy and daddy are still optimistic about the outcome we are all preparing that I will probably have to take a BIG ride in an ambulance over to big CHOC in Orange. There I'll have my surgery to clamp the tube. But we'll discuss that later when its time to report. That will happen either tomorrow or Tuesday. So what does this mean for me? I'll stay at big CHOC for at least two weeks recovering from surgery and then hopefully (everyone keep fingers, toes, legs and arms crossed) I'll get transferred back to Mission CHOC. Mommy and daddy are really worried about all the driving and being so far away from me.

On a funnier note, I pooped for the first time last night. Great that I did it, but there won't be another one for awhile. We thought that it maybe meant that my digestive system had kicked in but the nurses said no, they are actually suctioning air and bile out of my tummy which means nothing is moving yet. That is actually another side effect of the PDA so we really have to get that fixed.

I know it sounds like a lot of stuff is going wrong but we all have to keep up a good attitude and I am stubborn, so don't think this is going to throw me for a loop! Just keeps mommy and daddy on their toes.

I'll report in tomorrow!

Moving Day

Last night was quiet for me, gave my next dose of Neoprofin and they weaned me a little more from the ventilator. Early this morning they did a chest x-ray to see what my lungs looked like. A "little grainy" as they say, meaning I still have some junk in there, but nothing alarming.

My big adventure today was that they moved me allllll the way to the other side of the NICU. Luckily mommy and daddy arrived at the tail end of this process. They have some sick babies that need to be sequestered in the room that I was in so I get hang out with all the other cool kids in the general population. I'm over by a window in a corner so I'm still kind of quiet over there. Mommy got to change my diaper today. She did a good job navigating all my tubes and wires. Oh, and my nice nurse Kerry took off my UV mask and mommy and daddy got to see my eyes for the first time in several days. I actually have little eyelashes and I opened one eye for just a second. Neato stuff!

Tonight I get my last dose of Neoprofin and then they will do an echocardiogram tomorrow morning to see if my heart valve/tube has made any progress. Tune in, we should have some news tomorrow!

Small Victories

Hi everyone! Live from the CHOC NICU, I have only a little to report which makes mommy and daddy really happy. Last night they gave me my first dose of Neoprofin and I'll get another one tonight and another tomorrow night. On day four they will give me another echocardiogram (picture of my heart) to see if the valve/tube has closed up. Keep your fingers crossed.

In the meantime, I'm just hanging out in my incubator. They have started to slightly decrease the ventilator use so I'm breathing more on my own and they have decreased my antibiotics because I'm not showing any signs of infection. Hooray for small victories! Mommy and daddy will come back tonight to see me before bed. Til tomorrow!

I'm Number One!

Rather uneventful night/day in the NICU for me. They aren't doing too much to me because they are trying get my lung secretions clear enough to give me the Neoprofin (the Ibuprofin I talked about in my last post). I am tolerating suction much better now too. The doctors took another picture of my heart today and decided that the valve/tube is opening more and they don't like that. So they suctioned me some more and are seeing enough improvement in my lung secretions that they are going to move on ahead with the Neoprofin. They are also going to give me some FFP (fresh frozen plasma) to boost my platelet count, which will help me be stronger when they give me the Neoprofin. All this should happen this afternoon and evening so hopefully we'll have some new news come morning!


Mommy took some new pictures this morning. Notice my lovely sleeping mask...actually that is to protect my eyes from the UV lights they have on me. See, I'm like daddy already....gettin a tan! And...the reason for the title of this post...I'm number one! Just had to tell you all that in case you didn't know.

Here's the link with the rest of today's photos. http://www.flickr.com/photos/29664626@N07/sets/72157606859186090/
Until next time...

I'm tired.

Today was a very busy day for me. The doctors met with mommy and daddy this morning and told them all the things that they were going to do to me today. Get ready for an anatomy lesson!

So, when babies are in-utero they have an extra tube that goes from their heart to the lungs. It allows the oxygenated blood to pass easily straight to the lungs and bypasses the other half of the heart. Basically, it lets mommy do most of the work while I just grow. Well, when you were born full term that tube just sort of closes up and goes away and your heart and lungs start functioning on their own. Since I am so early that tube is still there and hasn't closed. Its causing a lot of fluid build up in my lungs so they keep having to suction me (I hate it) and they can't take me off the ventilator. So, guess what the fix is? Good old ibuprofin. But, they have to do a bunch of tests on me to make sure it is safe to give me the ibuprofin also. They did all the tests today and as soon as the results come back tomorrow they can give it to me.

Also, my poor feet were getting really bruised and swollen from all the pricking and testing they were doing. So they put in this really neat line through my umbilical cord artery and now no more poking! I'm under the UV lights right now too so my jaundice will go away.

So, as you can tell, its been a big day for me and I'm tired. A looooong nap is in order. Mommy and daddy are coming back later tonight to visit with me and if any big news comes their way I'm sure they write about it. Nighty, night!

I made it!

Hi, I'm Colton Chilla. My mommy and daddy will be writing for me as they get updates and photos out for all the people that I know are thinking about me.

First, how I got here...my temporary home (mommy's uterus) decided that I had overstayed my welcome and when I was 26 weeks old she went into pre-term labor. We stayed in the hospital for a week on strict bedrest and lots of medicine, but come Sunday, August 17th, we'd all kind of had it. They tried lots of medicine (ask mommy and daddy if you want to hear the gory details) but it was too late. So I entered the world at 2:55 am Sunday morning. I weighed 2 lbs. and am 13 1/2 inches long.

All the doctors and nurses are really excited at how big I am and that I am breathing pretty well on my own. I am up in my other temporary home, the NICU. They say I'll stay there at least two months, so I'm getting comfortable.

So far they have me on a ventilator to help me breathe but they have been telling mommy and daddy that I'm doing well and my oxygen levels are good. Today they were thinking about taking me off the ventilator but when they started to suction my lungs, I really didn't like it and my heart rate and oxygen went way down. They say this is because I'm acting like a premie....well I am! So they might try tomorrow. Also they found a heart murmur, but, again this is probably related to me being really early. Mommy and daddy found out that all babies have open valves in the uterus and by the time they are born they have closed up. Since I was so early, mine isn't closed yet which can lead to fluid in my lungs. Tomorrow they are going to do an eco-cardiogram (a picture of my heart) just to make sure it is what they think.

Overall, I am resting well. Tomorrow they might try to let mommy put me on her chest. I can't wait! Here are today's pictures you can see of me. I'll probably pose for a photo session about once a week or if I do something wonderful!

http://flickr.com/photos/29664626@N07/sets/72157606818661585/