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