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/