Great Strides - Fight with us!

Hi Friends,

This is Rebecca again - stealing back DJ's blog to send out an update since he doesn't get around to updating it very often. I know several of you have shared with us that you use this blog to keep up to date with what is happening in our life and with Colin.

I wanted to take a moment and write to you, because we need your help! We are participating in an amazing campaign for the Cystic Fibrosis Foundation called Great Strides. Great Strides is a 5K walk to raise funding for CF research. The vital research is what creates the drugs and therapies that allow Colin and other kids with CF to live longer more fulfilled (HEALTHY!) lives. CF does not receive federal funding, so it is crucial that people like you and me help make this research possible.

Would you consider donating to our team - the Fighting Fish? We understand that with the current economy and job loss all around, it may be very difficult to spare even a small amount, but you can be sure it is going to a good cause... helping Colin! Please think about what you can give - $25, $10... even $5 will make a difference!

Go to www.cff.org/Great_Strides/RebeccaFish to make a donation to our team online, or you can mail a check directly to us. We appreciate you taking a part in this years Great Strides.

Together, with your help, we can make a difference.

happy new year...2009

Many of you have been begging, pleading, for the next blog post. Well, here it is...

Welcome 2009. Our personal lives, as many of you know, have looked very similar to the life of the world's economies this year. And yet, despite all of that, we feel pretty darn good most days. Of course, the two hospital stays have not been the highlights of our year, and Colin's diagnosis was a huge wallop in the arse, but all in all, Rebecca and myself feel confident not in rosy days ahead, but in a practical sense of peace of mind about our lives and Colin's. As we look to the future, we don't see 2009, we see many years of incredible times with our son.

You see, 2009 is a finite idea. It has a beginning and an end. We know that Colin's life, just like all of our lives, is finite as well, but we cannot dwell on that aspect. If we focus too hard on when the end of Colin's life MIGHT be, in any of his possible limitations, we won't be able to revel in all that is between now and then, in all that COULD be. Call it a New Year's resolution if you will, but I will call it my LIFE's resolution -- not just with Colin but with every aspect of my life -- to look forward to tomorrow with open eyes and see it not as another day with a beginning and an end, but as an incredible opportunity for excitement and adventure.

We are thankful...

It has been a full week since I watched the nurses take out Colin's pick line, packed up our bags, said good bye and headed home from the hospital. I am not too surprised that it has taken me this long to find the time to write about the end of our stay and update you all on Colin's status.

We have spent the last week settling back into our home routine, catching up with stuff at home and work, and continuing to care for Colin as he needs us to. I am proud to announce that Colin is doing amazingly well. The doctor told us that he would be a different kid afterwards, and we didn't really know what that meant. We figured, Colin is a pretty happy, content kid anyway... so how much better could he become? We expected him to improve medically, but we didn't expect anything more. But it's true. He has grown up so much over the last few weeks. It really is as if he has more strength and energy to play and interact with his surroundings. Oh... and he is getting LOUD!

One doctor suggested that because we removed so much mucus from his lungs, that
now his nutrients can go to his growth instead of going to "fight" the infection and mucus buildup. Colin now weights 18lb 12oz and is 29" long! That is 25th percentile for his weight and 75th percentile for height! Before he was diagnosed with CF, he was in the less than 3rd percentile for his weight. What a drastic improvement!!!


On a different note, I want to say that we are so thankful for each of you. If you are taking the time to read this blog and stay updated on our lives, we love you. If you ever say a prayer for Colin, we appreciate you. If you have helped us out in any way... from bringing us dinner to calling to say hello... we are so grateful to have you in our lives.

One of the things Colin has taught me is that life is truly precious. We don't know how long we have or what the next day is going to bring us. So it is important to make the most of every moment we have. To cherish the time we get to spend with family and friends. I will continue to do the things I need to do to help Colin live a fulfilling life, and I hope and pray every single day that he grows up to be an amazing man and lives a long and wonderful life. While it's not always fun or easy to give him the care that he needs, I know that there is nothing more important that enjoying every moment I have with my beautiful baby boy, and doing everything I can to help him thrive.

I wish all of you a wonderful Thanksgiving! I hope you are spending it with people you love.

Oh, and I am going to give DJ back the reigns to this blog. It has been a pleasure writing for you.

-Rebecca

The Technical Stuff.

OK so I just reread the last few posts and realized some of you may be looking for an actual update on Colin's medical status, and not just another reminder that he is adorable.

On Wednesday morning we had another chest x-ray. The doctor said he looks much more clear. There are still a couple patches of mucus in his lungs, but if we focus the chest PT in those areas and continue with these meds, we should be able to knock it out. He seems to be responding to the meds perfectly. 

His breathing has drastically improved. Except for a couple nights when the respiratory therapists were running late, I have not heard a wheeze or rattle in his chest at all.... the silence is incredibly strange. Colin has been a hard breather since birth... so it's awesome to hear such an immediate difference.

The 2nd weekend.

Still Rebecca here. We're over half way there! I think both Colin and I are a little tired of the hospital. At least I can get out now and then... he is stuck! 

In the last few days we have had nurses "fighting" to be Colin's nurse... one nurse say "I've heard about colin but hadn't seen him yet"... more people talk about how cute he is and how happy he always seems... and one tell us that he is without a doubt the most popular kid on the floor. How did we get such an awesome little boy as a son? I am totally amazed with how incredible he is.  Seriously... colin has been at the hospital for 10 days now, and STILL have such a happy disposition... you'd never know there was anything wrong with him. 

Last night DJ had his first overnighter at the LCH. And tonight is my first night away from Colin since the first day he was born and in the NICU. For almost nine months, I have not gone a single night without him in the other room or right by my side (and technically 18 months if you count being pregnant).  It was hard to leave the hospital tonight, but I know it is good for me (I am going to sleep in a real bed!... and I am trusting Colin's daddy to be in charge!). I pray it is a good night for both of my boys. 

I just want to say a quick thank you to everyone who has prayed for us, called, and visited us during this time. We feel extremely blessed to have such amazing friends and family.

So Much For Schedules

Today was an interesting day for Colin. Every time he fell asleep for a nap, someone would come into the room (often loudly) and wake him up. So each time I would lay him down, he was so restless- fighting sleep. Even now, he is down for the night but I keep hearing him stir. And any moment the nurse is going to come in to hook up his IV, and I am sure he will wake up again. Poor little guy. The doctor understood that it's not easy maintaining our normal schedule in the hospital, but he's trying to help! They weigh him every day... and I just found out they were doing it at 4:00 in the morning. I thought it was ridiculous, but they said that's just what they do for kids under 1yr old. Thankfully, our doctor told them NOT to do it until after 7:00am! Maybe Colin will actually sleep all night tonight. We'll see...

He's still doing fine. His breathing is pretty good, his appetite is big, and he's growing every day. Colin did have something exciting happen today. He is starting to babble more, and today he has discovered the "da" sound. It's adorable. He now speaks continuously "dadadadada". One day he'll know what he's saying, but for now, DJ is still pretty excited to hear Colin call for him!

I finally left the hospital today. I didn't really feel like I wanted to or needed to, but everyone wanted me to get out for a bit... so I left. I am sure it's good for me, but I think having a nice view of the world from our room helps me not feel cramped. I get to see the outside world every day through our window. And many friends and family have come to visit. All those things are helping to make our stay here much more pleasant. Nonetheless, I will continue to leave the hospital a few hours as I am able because I know it's suppose to be the healthy thing to do. But all I really care about is being here with my little boy.

Tomorrow we have a chest x-ray in the morning. I think the doctor expects it to look clearer than last week. I'll update once we know a little more! Hopefully Tuesday will be a better day for baby Colin!

A New Week

Monday's over. I didn't even write on Sunday. Not because I didn't have a chance to, but nothing new really happened. We're  just here. Each day is pretty much the same. The nurses come in. They hook Colin up to the IV pump, give him meds, do some breathing treatments, he eats, he sleeps... and then in a few hours we do it again. It's really not so bad. Colin plays, I try to get some work done, and we make it through the day... putting us one day closer to going home again. 

The doctor still thinks he is going great. We will be getting another chest X-ray on Wednesday and some lab work on Thursday. They will just keep monitoring his progress and enjoying getting to see him every day. One of the nurses Colin had a couple days ago passed me in the hall and asked me how her boyfriend was doing. Today some of the nursing students from UNCC and CPCC were here, so Colin flirted and they played with him a little. The students ask some good questions about CF, and I am glad to be able to share our story with them. They seem interested in how it is diagnosed and what to look for and stuff like that. I think it's great they are learning about CF, even if it's through us.

I don't know if there will be anything noteworthy in the next couple days, but I'll be sure to at least post to say we're still here and doing fine. Until then, goodbye from the LCH!

Day Three at the LCH

I’m starting to get that feeling like, “wait, what day is it?” There is not much of a difference between Friday or Saturday (or Sunday, or Monday, or Tuesday…) except that DJ was off work and able to spend the day with us at the hospital. Things are still just trekkin’ along. I am sure in a couple days I will start to get a little cabin fever. I am going to make it a goal to get out of here a little, but it is hard to leave Colin’s side. Or at least leave the hospital. I have gone down to the cafeteria, and the short break is good. In a way, it’s fun to get to spend so much time with Colin and family that has been visiting.

We really like the nurses and doctors. It has been an interesting couple of days though. They are implementing a computer charting system, and so everybody is running a little slow as they adjust to the change. One nurse said “I’m good at being a nurse, not a computer nerd.” I think that it’s kind of funny. But it is very cool that Colin’s records will be accessible and clearer than in the traditional paper charting method! We are probably good for them to learn on though, as I am extremely laid back and patient, and Colin is content no matter what’s happening. I figured, we aren’t going anywhere, so why should I care if it takes them 10 extra minutes to get all the info in order.
For those of you who want to know more about Colin’s medical status, the samples taken during the broncoscopy are showing the same things as the culture from his mouth taken a week ago. So, we are on the right medication and should not need to change anything there. Basically, as they watch the culture develop they may decide to change the dosage to treat his infection accurately. Not a biggie.

They weighed him today and will continue to weigh him daily to track his growth and make sure his digestion is on track. He was 17lb7oz! That means either the scale is way different than the one in the doctor’s office, or it means he has gained 9 oz in just 5 days… he was 16lb14oz last Monday! That is a HUGE jump for Colin! I’m very proud on his growth. Along with this weight gain is developmental growth. He is so close to crawling and is trying to sit up from laying on his back all on his own. We know that the moment he can do it… life is gonna get a little trickier as we will have to keep our eyes on him all the time! But it is so exciting to watch my little boy learn and grow.

One last thing I want to share is that we spoke with Colin’s pulmonologist, Dr. Ashe today, and he shared with us his enthusiasm towards the latest CF research and developments. He recently attended the annual CF conference, and he said for the first time is 18 or so years, you could feel the excitement as they revealed some positive things that are being tested and studied. It’s wonderful news. Because everything they learn and develop can be passed on to Colin, to improve his life and, hopefully, EXTEND his life. We are truly thankful for our doctors and that we live in a place where we can get TOP NOTCH care so close to home. We know that Colin is in good hands. As his parents, we’ll do everything we can for him. His doctors are knowledgeable and prepared to care for Colin. But the best of all is that Colin’s life is completely in God’s hands.

Hospital - Day Two

Things are still going well around here. This is a great hospital. It is warm, inviting and extremely kid-friendly (honestly, I wish grown-up hospitals were this cool!). Since Colin is not hooked up to monitors or actually “sick”, we are able to move around and do a lot more than last time we were here. There is a play room on the hall (which we have not been to yet) and on the top floor there is a play garden. It is outdoors, open to the air and sun. We went up there today. They send us with a pager like you get at a restaurant, in case they need us back in the room. It was a beautiful day, and it is encouraging to know that we can take a break and go on a walk whenever we want. There is also a department in the hospital called “Child Life.” Basically, they are here to make the stay enjoyable. They provide toys, and if needed, would come stay with Colin while I went to go do something so he would not be alone. (Luckily Colin also has 2 grandmas in town to do the same thing!) Since they know we are here for a long stay, they seem to be going the extra mile to make us comfortable. Yesterday with the big room, today with extra TOYS!

Many of the nurses and therapists recognize us from our last visit. Everyone who remembers him is impressed with how much he has grown in the last two months. And all of them remember how adorable and fun he was to have as a patient! He has a great reputation… for being the happiest and cutest baby ever. I love that. I think he is precious… but it sure is fun to have every person who enters the room mesmerized by my son!

We noticed today that as we walk around the hospital we keep saying “well that will be good when he’s older.” It’s actually really annoying that a statement like that does not seem odd. Really… it’s a little crazy that I can get excited about future hospital visits – EXPECTING that, of course, we WILL probably be back. We have been told that, on average, a person with CF may spend some time in the hospital every couple of years. And this is our second time in two months. I hope that it does not continue to be this often… but we do assume we’ll be back again. And, at least, there are fun things to look forward to next time around and as he grows up.
Tomorrow is Saturday, which means DJ is going to get to come spend the whole day with us. Colin loves spending time with his daddy, and he has not had the chance to play with him all week! So… we hope that tomorrow is going to be another good day for The Fishes.

Hospital - Day One

Hello, family and friends. This is Rebecca. DJ is letting me interrupt his blog in order to give you updates while we are yet again in the hospital.

For those unaware of this planned hospital visit, allow me to elaborate. About a week ago Colin’s cough worsened. The medication we had been on to treat the pseudomonas (a common CF infection) was not clearing it completely. His pulmonologist decided to do a broncoscopy, which basically cleans the mucus out of his lungs, and then also administer the antibiotics for the infection through an IV. Because he is so small, they did not want to send us home to do the IV. So… we will remain in the hospital for the entire 2 weeks to receive the medication.

The broncoscopy was this morning. Colin is the MOST amazing kid ever. Everything went great. They completed that procedure along with placing a central line in his arm. (disclaimer: I understand about 50-75% of what the doctors and nurses tell me, so I may say medical things wrong here. Forgive me!) Once he was moved into recovery he could finally have a bottle (after 15 hrs!) and I could see him again. It didn’t take too long for the anesthesia to wear off and for him to get back to his normal self.

I am feeling much better about this hospital visit than the last time we were here 2 months ago. He is not hooked up to monitors. He is allowed to get out of the bed and play. We are allowed to care for him like we would at home, except the nurses give him all his drugs. Plus, when our nurse found out we would be here for 2 weeks, she moved us from a regular room that overlooked a cement wall into this gigantic room with a great view.

So... it’s the end of day one. Colin is great. He is breathing more clearly and (finally!) sleeping soundly. DJ and I appreciate all your prayers. We have a long two weeks ahead of us.

I will probably post periodic updates here instead of sending personal (or mass) emails. So if you want to know what’s happening with the fishes… you know where to find us!

sippy cup

For the past couple of months we have tried multiple times to get Colin to understand the mechanics of the sippy cup. We were just using the normal ones you find at Target that are colorful with a little nozzle on the top and handles on the side. We tried it when he was hungry, when he wasn't hungry (and calmer), and every stage in between. We would give it to him just to play with and get used to and also put a little formula or juice in it to tempt him to put the little nozzle up to his mouth. No such luck.

Our latest attempt was using the Avent attachment for his normal bottle that provides handles and the "feel" for using a sippy cup. Still, eventhough he might grab the handles, he wasn't understanding that we wanted him to raise it to his mouth, tip it up, and let the sweet nectar flow onto his tongue and down his throat.

Despite how it might sound, we weren't desperately trying to get him to use a sippy cup. Really it was just a fun idea that we were hoping he would get the hang of. Just like every step has been, though, we knew one day a light would flick on in his brain and he would know exactly what to do, and do it. Today was that day.

I was drinking some good, old fashioned sweet tea from a glass and Rebecca was sitting next to me with Colin in her lap. As soon as he saw me raise my glass from the table all he wanted was to grab it and "play" with it himself. I let him grasp the rim and the side for a second, then we got an idea. I assembled a small Avent bottle with the attachment and brought it to him (empty). Immediately he stuck the nipple in his mouth, knowing exactly what to do. Being dinner time, we went ahead and prepared his formula, starting with two ounces in this bottle. He downed it in no time with only a little tip at the bottom from Rebecca. As he finished we refilled it until he drank all 10 ounces!

 

We were so proud of him, and it even got us to thinking about what else is going to be changing as he continues to grow up. All we've known in his life thus far is that we pretty much do everything for him. We are exhausted much of the time and have no idea how parents have multiple babies at a time -- or especially how single moms/dads make it. Then we realized, just like now we will not be holding his bottle for him as he drinks, there will be a day when he can use a spoon and fork (or even a spork) to feed himself real food. Eventually he will be crawling and walking himself without our assistance; he'll take his own baths, brush his own teeth, put on his own clothes, clean his own room, and on and on. Of course, for a while we will still be observing most of these things, but not actually DOing them for him will be such a load off that I can't even imagine.

At the same time, there will be a day when he doesn't need us as much anymore, and a day when he even moves away and starts a family of his own. For now that seems like in the distant future, but I know those days will come before we know. And they WILL come. What we can do now is prepare and shape Colin so that he will have the toolbox he needs for facing this world outside of the protection of Mom and Dad. We love him so much and so excited to continue to watch him grow up into an incredible man.

 

much delayed update

It has been a little over a month since Colin was diagnosed with Cystic Fibrosis. In that time we have received an outpouring of love and prayers from so many of you and we cannot help but feel the hand of God moving in our lives. First and foremost we have asked you to pray that God would give us strength, and He has provided all the strength we need. Not to say that the past month has been easy, nor that the next many years as Colin's parents will always be easy either, but we have a determined trust that the Lord will always provide us with the extra courage, the extra patience, the extra endurance we need to face CF and to face this life he has blessed us with.

Thank you all so very much for everything you have done. Both in thought, prayer and action. We cannot express how much you all mean to us and are grateful to call you all "family."

As for Colin, he is doing extremely well. At his seven month well child exam he weighed in at approx. 14 lb. 12 oz. and a week later at his pulmonologist (CF Dr.) appt. he had gained another half pound or so. In a little over a month's time, that means he gained almost 3 lb. when previously he had been gaining about a pound a month, and not even that recently. His CF Dr. noticed significant improvement in how well the air was moving through his lungs and suggested we could reduce the three breathing treatments we were doing per day down to two for two weeks, and then down to just one. They did test him again for Pseudomonas, which is a CF specific virus, and it is still present in his system, but not causing any illness. In order to knock it out of his system he is on an antibiotic called Gentomicin.

Our life is definitely different than it was a month and a half ago, but I think we are getting adjusted to it all. Below I have sketched out what a normal day looks like for us lately. Bear in mind that this could easily change with every passing week.

Rebecca's sister, Sarah Branigan, has also started an incredible "event" through the popular social networking site, Facebook. Through the event, "65 Roses for Colin," Friends, family and strangers are able to create a rose (any way they choose) in honor of Colin and send it to him. We have received many more than 65 and have heard that there are more on the way. Additionally, Sarah and Rebecca have put together a website to permanently showcase the roses that have been sent in, as well as provide information about Colin, Cystic Fibrosis, CFF.org, as well as how one can get involved in a local or national campaign. Please check out www.colins65roses.org whenever you get the chance!

A day in the life of the Fishes:

wake up

colin's am breathing treatment (xoponex & pulmocort, then gentomicin)

shower/get dressed

give colin vitamins (once a day)

give colin zantac

give colin enzymes (every feeding)

feed colin

chest physical therapy (pt) - somewhere in there

take colin to nanna's

work

pick up colin from nanna's

get home

give colin zantac

give colin enzymes

feed colin

bath

chest pt

bedtime story

colin's pm breathing treatment

colin to bed

Of course, this list is oversimplified. However, the best days do seem to be the ones that are the most regimented. We find that Saturdays are the worst at trying to keep his schedule, especially with naps and the like, but he toughs it through, and he loves spending all day with daddy (and mommy).

Also, check out the newest pictures of Colin on Picasa via the link to the left!

seven months old...

As I'm sure you all understand, time is no longer of the essense, if you will. Or really, it is. The things that before always HAD to be done, really aren't quite as necessary in our lives. What is of the essence, though, is Colin. So much so that Rebecca has now crafted a daily schedule for us to use so we don't forget a nebulizer treatment, or one of the many new steps in feeding him, or a session of chest pt (gently thumping on this back and chest). So many things involving Colin and taking care of him are more "of the essence" now than they ever were in our eyes before. It is crazy how adjusting your life because you absolutely have to can give you a glimpse into how selfish you really are as a person. And slowly but surely, through this process, we are stripping down layer upon layer of selfish pride to provide completely selfless care for our son.

Sitting in his room, by his crib, between 9 and 10 each night, holding a breathing mask up to his face so he can take in the different drugs pumping through the nebulizer, there are moments that I look at him and I can think of no where else I would rather be, and yet in the same moment, I don't want to be there at all. I want to be downstairs watching tv, or lying in bed next to my wife. I don't want to have to play "doctor" day in and day out for my son. I think ahead to our future and I don't want to spend a week or more each year by my son's hospital bed because his breathing had become too bad for us to care for him in our home. These are my selfish desires. I don't want them so Colin doesn't have to go through it all, I want them because I don't want to go through it all.

And in that same moment, I am back to not wanting to leave Colin's side. To always wanting to protect him and provide for him, and watch him grow into a stellar young man and sweep some lovely, unsuspecting young girl off her feet. I want to instill in him a desire to dream big and love intensely and live adventurously. These are all things that I wanted since the moment we found out Rebecca was pregnant. I want to love him unconditionally and I pray that through those devastating moments when the neurons in my brain are colliding with the reality and the gravity of Colin's situation, that God would provide both Rebecca and myself with the strength and the courage to rise above the "me" culture in which we live, which infects us both, and see to it that our actions towards Colin are completely and utterly for him, 100% organic and pure.

So as for the essence of time, the blog really hasn't been gaining any ground on the list. It is evenings like tonight, when Colin goes down for bed smoothly (which is actually happening much more often lately), that I am able to squeeze in some time for things like this. And so instead of a real update with all the details of our life over the past few weeks, here is an even truer update into our hearts and our desires. To all of you, thank you so much for all you have done over the past several weeks. Please know, even if we haven't had a chance to thank you personally, that you are all greatly appreciated. I also know that many of you have sent emails and written letters and the like, and while we haven't been able to respond to every one just yet, please know we have received them and we thank you so much for your offerings of support and prayer. We humbly accept them all.

Soon I will have to add more pictures to Picasa of our incredible growing boy. Thanks to the enzymes he is now taking, he is bulking up quite nicely. I will be sure to let you know when I do. For now, adios.

sixty five roses

Colin, Rebecca and I arrived home from Levine Children's Hospital on Monday afternoon and got started right away on laying our schedule over the next few days: full of Albuterol treatments, medicine giving and feeding schedules with new precautions to counteract Colin's reflux. It was a lot, but we were ready.

After twenty-four hours at home, Colin was back to his pediatrician for a follow-up appointment, where the doctor recommended he be tested for cytic fibrosis. Time out.

Now, at the hospital, the attending doctor had mentioned CF, as we now know it, but only as something they would have tested for if he had been sick for a month and still not getting any better. This had only been two weeks, a long time, but still not so long as to still have some lingering congestion, in a baby nonetheless. But after looking at Colin's growth chart and all of the respiratory issues going on with the cold and pneumonia, she said it couldn't hurt. Gulp.

This morning Colin was back at Levine for the test and around 1:30 Rebecca called me with the results. Colin was positive for cystic fibrosis, or the moniker that it has come to have: sixty five roses. Big Gulp.

So what does this mean? What is cystic fibrosis exactly? Isn't it that crippling joint disease? 

According to the Cystic Fibrosis Foundation:

"Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

- clogs the lungs and leads to life-threatening lung infections; and

- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."

Scary? Yes. Crazy? Yes. Will we make it through? Yes. Friday we will meet with a pulmonologist who will go over a ton of information about the disease and give us an opportunity to ask any questions we might have. From there we will schedule the second test and at the same appointment go ahead and test his body to see what type of CF he does in fact have. The information learned from that test will help us determine what combination of treatments Colin will need.

Needless to say, this week has been insane, but we are up for the challenge that is before us. Of course, a part of us wants to be able to raise our son without having to give him special treatments, or give him medicines with every meal, or take extra precautions when he is going to be exposed to people who are sick, but the reality is that our son has cystic fibrosis and we are ready to do what we need to do.

Tonight, when I came into the house from work, I looked at Colin and he smiled back and gave a little laugh, and all I could about was, there's my son, the same as he's always been. The reality is, that is true. Nothing has changed about Colin, only the information, the knowledge, we have.

I love him so much and while I know there are challenges before us, I am more excited than ever to see the man that my son will become.

If I may make one request: please pray. For Colin, for our own abilities, for our emotions, and for our sanity through all of this. Thank you.

happy anniversary...

Five years ago my wife and I were in the mountains not far from where I grew up, getting ready to say our vows in the little town of Brevard, NC. We had found the perfect setting: a beautiful waterfall called Connestee Falls, with enough space for a few of our closest friends and family. At that point, we could not even imagine what our life would like in five years. Many even doubted if we would make it this long, and they were probably wise to doubt our chances, but here we are, with an amazing son: Colin Patrick Fish.



After we got married, we used to talk about the extravagant ways we could spend our fifth wedding anniversary. We covered everything from having a huge party for everyone we wished we could have invited to our wedding, to contemplating exotic trips both here in America and abroad, to laying out a tour of wineries up and down the eastern seaboard. None of these plans included spending our momentous day in a hospital room with our son hooked up to monitors and waiting for the doctor's next action. But to be perfectly honest, now that we are here, and while we would love for all of us to be at home and for Colin not to be sick, with these current circumstances, there is no place in the world we would rather be. In a way, the greatest celebration of our five years together, truly is our son and the love that binds our growing family together.

As our stay here in the hospital has lengthened, we have learned much about different tests, about how pneumonia is contracted, and about what the doctor's really are looking for before that can have a clear conscience about sending us home.

Yesterday, as Colin was pretty much staying the same, we decided to use a mask to administer the Albuterol treatments, as well as do them every two hours, instead of every four, and also give him another 24 hours to see if the antibiotics would kick in. The night before we had also started some feeding techniques to decrease his reflux and started him on Zantac as well. Again, he was a hit with the nurses as he took his medicine (even when he spit it up he was irresistably cute).

Last night, with three Albuterol treatments within a four hour period, we started seeing his head twitch back and forth ever so often. On top of that, the doctor had noticed his fontanelle was a little more puffy than when he first came in, and neither of us remembered it being like that before, so they moved up an ultrasound to check that out from Sunday morning to Saturday night. The ultrasound didn't show anything that would indicate that the puffiness is abnormal, and we realized that his shaking was more than likely due to all the Albuterol, as it is a stimulant, especially since he had no other symptoms of seizure activity.

Needless to say, yesterday was probably our most eventful thus far. And while at times it just seems frustrating to be here when he still seems happy and without fever, we understand that it is best for him to be here while he is still working his lungs so hard in order to breath. Today's goal is that he can make it four hours between Albuterol treatments and shows at least some progress from that. Through the night he has been at every three hours and is doing well with that, so hopefully we will receive word by the end of the day that we can go home. We do keep telling ourselves that every day, but today seems more likely that it has thus far. The only thing that will keep him in is if his wheezing gets any worse with the Albuterol treatments at the four hour interval. Please pray that he is able to show some progress on that front, and we will be able to take him home this evening.

Thank you all so much for your continued prayers and support. We love you all so much.

colin and the hospital

Okay, so it has been a couple weeks at this point, but things have been busy in the Fish household. Two weeks ago Colin started having some cold symptoms, including coughing and a slightly stuffy nose. By last Friday he was starting to wheeze a lot more and so Rebecca took him in to see the doctor. He gave us a prescription for Albuterol (the same stuff that asthma sufferers have in their inhaler), as well as a steroid which I'm not even going to try to spell. Plus, with the Albuterol, we got a cool new machine called a nebulizer!

So there began the Albuterol treatments three times a day, and a baby who did NOT want anything to do with it. Luckily we quickly figured out that when Colin looks at the tv, he has no idea what else is going on. I guess that throws a wrench into our plan of no tv watching for the first year.

On Monday he was already scheduled for a wellness visit, so he went back to the doctor to check on the progress. There wasn't really much of that, but the doctor upped the dosage of steroid and said to continue the Albuterol treatments.

The funny thing through all of this was that Colin had no fever and other than coughing and crying at times from the pain that caused, was his normal happy self. And after that appointment, a part of us thought that maybe he was getting better. Then came Tuesday, and Wednesday, where Rebecca was struggling between trying to get her work done at the office, and take care of Colin, too. Colin was also getting more fussy, and the Abuterol really didn't seem to be doing anything at all. Rebecca took Colin back to the doctor on Wednesday and confirmed that there really wasn't any progress and could hear a good bit of congestion in his chest.

From the doctor's office, Rebecca and Colin were sent for Colin to get a chest x-ray and the doctor called us back almost immediately with the results. There was definitely something, possibly pneumonia, in his left lung, but definitely not enough to cause a tremendous amount of alarm, as long as we continued what we were doing. He had also given us some Azythromax (antibiotic) just in case there was a lingering infection to knock out. Colin was also scheduled to go back the next day (Thursday).

At Thursday's appointment the doctor was still seeing no sign of progress but also pointed out that Colin still had no fever and was his happy self. He proposed that we could admit Colin to the hospital for monitoring, or go ahead and take him home and continue what we had been doing there. Rebecca was fine with the later option, but then only a few minutes after the Albuterol treatment done at the doctor's office, Dr. Dorsey noticed the wheezing had already returned, even stronger than earlier. This perplexed him and after a slight pause, said that he would rather go ahead and send Colin to the hospital.

Around this time, I got the call from Rebecca at work and was soon on my way to the Levine Children's Hospital. It brought back memories from only six months ago seeing Colin hooked up to all the little wires, and the little O2 sensor on his toe. In a way, it sort of felt like we were taking advantage of the situation by having our happy little baby taking up space in the hospital, while we had a room down the hall stocked with all the juice, ice cream, popsicles, and the like. For the most part the doctors just wanted to keep monitoring him through the night to get down to the bottom of why he is continuing to wheeze in spite of the of the Albuterol treatments and drugs.

Rebecca stayed overnight with him in the room and I went home to sleep and gather some things that she would need in the morning. One thing the doctor wanted to do is run a test called an upper GI exam, or also a "barium swallow" - which I like better, and it was really cool getting to see his food go down his esophagus and into his tummy on the x-ray screen. Luckily, they saw no problems with his esophagus leaking into his respiratory tract, but the radiologist did in fact notice some reflux, just a tad more than what they would like to see in a baby Colin's age.

Back in the room, the doctor spoke to us some more and from information from us and watching him before, during and after an Albuterol treatment (all of which was right after he ate), reaffirmed for her that he had some reflux problems. As of this point, her thinking is that he has higher than expected reflux, and when he contracted a cold virus a couple weeks ago, it only exacerbated those problems and the reflux has made it more difficult for him to break up the mucus that is plugging up his airways.

She has given us a number of suggestions, and after consulting with Dr. Dorsey will decide if Colin should go on to a medication for his reflux. They will definitely continue to monitor him and will likely keep him another night here in the hospital, which while doesn't feel great as a parent, we at least know he is in good hands.

Looking back over Colin's medical history, it is incredible to think about the doctors he has had and their own relationship with Christ. Rebecca's Ob/Gyn who delivered Colin is a strong believer who prays with all of his patients prior to delivery and our doctor here at the hospital shared with us her story of doing yearly medical mission trips to South America and her openness about her faith with her patients and colleagues. It does not seem common for doctors to be such strong Christians, but our experience has been incredible. We truly believe that it is because of God that these individuals have been able to be a part of our son's medical story.

I know it might be crazy for me to say, but neither of us have really been terrified through any of us. Stressed? Yes. Tired? Yes. Confused? Yes. But scared of what the outcome might be? Not at all. Whatever happens, this is all in the Lord's hands and it is in Him that we trust.

I will try to post an update as soon as we hear more. Thanks for reading!

three roads converge: parenting. god. politics.

I said I was restarting this blog with a new goal. I know this post is long, but this will not be the norm. I just wanted to try and lay out why I needed a new format. Here goes...

There was a time, not so long ago, when politics was a major part of my life. I spent a lot of time thinking about what the best decisions would be for me, for my community, for my country, and for my world, both now and for future generations. It is amazing how having a child can completely alter how you view the priorities in your life. Now, instead of thinking about what I can do to try and perfect this world, both through my own actions, and through voting for others of like mind, I find myself focusing more on what I can do for my son, and future children, to allow them to cope in a world that will never be perfect and is utterly and forever broken. At this stage of my life, I am starting to understand the tool that is needed to face this broken world. So as a parent, what role, what responsibility do I have to raise Colin in an environment where he might come to know and understand this tool, Jesus Christ, and learn what it means to have a personal relationship with Him? That has become my greater goal as a parent. Not what we can leave in this world for our children, but what we can equip our children for in this world, so that they might spend eternity with their heavenly father, and understand what impact they might have on others around them. That is a legacy worth living for.

So as we near the most highly contested political race in this country since I have been able to vote, I am thinking about all of this stuff. I think about how there is nothing politically we can do, there is no governmental choice we can make, that is going to make America, nor this world, perfect. Ever. On one hand that sentiment makes me want to just toss my vote aside and not worry about any of it, but I know there is a more righteous cause. Because, on the other hand, there are decisions that can be made not to make this country perfect, but to create a lasting, sustainable structure for the future of this great nation. We will make mistakes. We will always make mistakes. People will always be selfish. Whether they are on the streets, or in the White House, or in the heart of suburbia, humans will always be selfish. This is something that George Washington and his cohorts knew almost 250 years ago when they crafted the Constitution. They instinctively knew they had to create a system of checks and balances so that no one person, no one entity, no one group of people could take control of our government and run with it. They knew that if anyone had the chance, they would do just that, and so America began with this mindset.

Currently I am reading Blue Like Jazz, by Donald Miller. Yes, I am just now reading this amazing book. He brings up this notion of checks and balances and explains it like this. If you ask a typical person, “Do you think that humanity is instinctively good?” the overarching theme of answers will be an emphatic “No.” Will you disagree? And yet, as we raise our children we teach them how to share, how to treat each other with care, and how to do things that will respect others as well as protect them from danger. If we as humans were actually good, then why do we have to teach them good behavior? The answer is that we are NOT inherently good as humans and we live in a world where evil exists. This is the incredible truth that I want to teach my son and teach his future brothers and sisters. And this is what I want to share with every living person I know. I just don’t know how, other than this blog. This incredible truth is not meant to scare or to intimidate anyone, it is only meant to help with the understanding that we as humans are not good and are not able to reach a state of goodness or perfection on our own. And that is why we have a savior.

I love my son with all of my heart, and I love the man that his birth is causing me to become. I am inspired in a way that I have never been before, not only for Colin but for every person on this earth. Call it my holy discontent if you will. I know I have a number of people reading this who are Christians. I know there are others who may have been raised in a Christian church, but aren’t quite sure what bearing God has on their life. And I know there are still others who are completely and totally separated from any notion of Christ or having any association with him. For the Christians, my hope is that you too might gain some level of inspiration if you have none. For those who have fallen away from the church, I hope that the wounds that are left behind would be allowed to heal and that you would come to know Christ instead of the religion of the church. And for those who who want nothing to do with God, it makes me glad that you are still reading. I cannot force you to accept Christ as your savior. I am not here to save anyone, because Christ already did that. I can only share with you my story as a Christian hope that God might use that to give you a better glimpse of who He is. Through that, through this blog, whether I am talking about God, politics, Colin, my life, music or otherwise, I hope that God might enter into your life, captivate your heart and lead you to Him.

This blog is for Colin, but I have decided not to use it to show you every cute little thing he might do. Instead I want it to be held through time as a testament to him, that one day he would be able to see the devotion his father has for him and for his eternity. And that it is with the same devotion that his father’s heart aches for the eternity of everyone on this planet.

If you would like more information on what a relationship with Christ might look like, feel free to contact me at dfish3@gmail.com. If you would prefer a more discreet, anonymous setting, here is a great resource for finding more information: http://www.charlottesouth.org/connect/wondering/index.asp.

five months and counting....i'm back!!

I understand it has been quite some time since I've taken the time to put a post up. And really, the past few posts have been relegated to videos and pictures and looking at the past. Much really has happened over the past couple of months, but if I continue to try to play catch up with Colin's life, I may never actually make it to the present. Allow me to give a quick recap followed by an outline for me new goals for what is truly "colin's blog". It is called 'blogginforcolin' for a reason.

As of our latest appointment with the doctor, Colin is growing "up" at a surprising rate -- in the 90th percentile for height, clocking in at just under 27 inches long. His weight on the other hand is still only around twelve pounds, and looks quite like a string bean. We have no concern over any of this, however, and his doctor says he is doing great. He is also eating a TON, both from mommy and from his cereal/soy formula combination. For anyone interested, he is a HUGE fan of happyBellies, a new brand of infant cereal developed with the help of Dr. Sears. Plus, you've gotta love their look :)

He had his first full blown family vaca at beautiful Ocean Isle, NC. A part of me would have complained to no end prior to Colin's exsistence about having to schlep all that we needed when we took him to the beach, just for him to spend a few minutes in the water. But I ended up surprising myself at how much I loved doing it for him -- not withstanding my frustration with the wind's effects on his little tent.

We also discovered (although we really already knew) that I am probably going to be more of the prude when it comes to protecting Colin. My nerves were on edge as Rebecca was "playing" with him in the pool. By the end of the week, though, I became confident in myself as well as her at handling Colin around the water.

Since getting back from vacation we've kept ourselves pretty busy and Colin as well. Between events with my family, and with Rebecca's, and not to mention all of our friends, Colin has had no deprivation of attention.

I think that pretty much gets us all caught up to date. My goal from here on out is twofold. First, that I will be much more diligent in keeping this blog current. No more two month breaks (But come on, it was summer!). And second, that this blog will truly be -- Bloggin' For Colin. There will be a plethora of information about and for him, but I also want him to one day understand the world that his parents were living in when he was born. If there's a current event that peaks my interest, I will share that, along with any commentary that I may have. If I am inspired about a particular event through my love for my son, I will share that. However, with all of this said, I will NOT use this blog as a stump from which to proclaim my opinions on the world. At all times, it will be focused on my son, and of course, no shortage of links to photos (rather than being hosted on here) in my new flickr. I'll let you all know where it is when it goes live.

Thanks so much for staying in tune, and I'm sorry (Emma), for not forcing you to watch me change a diaper over and over.

It's good to be back :)

In the meantime, check out my wife's eye: http://www.charlottesouth.org

diaper change, take one

Here is a video from the hospital. Rebecca's sisters provide thoroughly entertaining commentary for the ordeal. Also, it is nice to see me in this video, and see that I really have lost a good amount of my "pregnancy" weight.

Disclaimer: I am now quite proficient at diaper duty.

Colin's Room

Here is a tour I did of Colin's room a couple of weeks before he was born. I apologize up front for the cheesiness :)