Because May is Cystic Fibrosis Awareness month, I am taking some time each day throughout the month to bring you through our journey.
Somehow I am supposed to sum up our first year within this one post. Wish me luck on this one!
Our first clinic appointment at the University of Minnesota was a relief. Odd perhaps, but hearing the doctors opened my eyes to the reality of what CF is today. Yes, it will be tough work. Yes, our lives will be forever changed. But there is hope. At our clinic, the plan for children born today (and within the last couple of years) is to live full – and fulfilled – lives. We were told that yes, we need to plan for college savings. That yes, he will need to save for retirement. And yes, he someday get married, have children and someday grandchildren.
It was a year filled with tumultuous highs and lows. The first few weeks are a vacant blur, filled with out of control hormones and tears. Everyone around me was telling me that I had a perfect little boy, but I looked at him and only saw CF. I was convinced that there would never be a day where I could look at him and see just “Gavin,” not “Gavin who has CF.” It was a dark time, and I only snapped out of it because of Casey. About 6 weeks into our journey, he looked at me and said, “I need you to be here now. I can’t do this alone. We have to do this together.” And from that point forward, we became a normal family. Two happy parents, one happy baby…just with a little extra daily work than the typical family.
We visited the clinic every month for the first six months, then every other month until he was one. We quickly realized that we would know some of his medical team members better than our family/close friends! Gavin’s medical team consists of a pulmonologist, respiratory therapist, nutritionist, genetic counselor, social worker and nurses. To this day, they love to see how much he has grown between visits – we love that they remember each family and truly care about life other than CF. While it is tough to accept that our little guy needs an entire team to keep him healthy, we are beyond blessed to have such amazing care.
Besides the diagnosis through the newborn screening test, they also do a “sweat test.” They put a dab of a chemical on Gavin’s skin that forced his body to sweat in that small spot. A sensor was placed on that sweat “spot” and after a few minutes they take a reading. Anything over 50 is a positive result, I don’t remember Gavin’s exact number but it was high. That does not indicate a more/less “severe” case – it just states a positive result.
We were told that Gavin’s pancreas is insufficient – it doesn’t function. Therefore his body does not make the enzymes that break down his food and allow his body to absorb it’s nutrients. Therefore, he was started on pancreatic enzymes - a small capsule that can be swallowed or opened up and emptied into a spoonful of applesauce – that allows his body to absorb the food/nutrients. Attempting to get a five day old to eat a bite of applesauce? Interesting to say the least. And remember, infants are up at all hours, so in middle of the night feedings I would have to get his applesauce, dump out the capsule, and try to get my newborn to swallow it before I could even feed him. That is a part of our lives that I do not miss!
Very early on, we started “Chest taps” twice daily. Thumping on his chest, sides and back to move that sticky mucus around. In the beginning we did it while he was awake, but as time went on we waited until he fell asleep…and he’d sleep through the entire event.
Just when I thought I was “comfortable” with CF, they threw in the nebulizer. Lesson one for with CF, don’t ever get comfortable with it, something new/unknown is always around the corner.
When Gavin was just under a year, we were able to get him a Hilrom Vest. This machine truly changed our lives. From that point on, we didn’t have to teach anyone the crazy instructions/methods of his chest taps/CPT we just had to show people how to turn it on and start it up…the work was done for us! We were no longer limited to immediate family taking care of him. Our concerns that Gavin would not adjust well the machine couldn’t have been more far off, from day one he has done amazing with it, sitting for an hour each day (2 half hour sessions) while getting thumped away.
It took us between seven months and a year to really move through the grieving process; to accept that the disease was in our lives, and that there was nothing we could do to change that. We began to focus on what we could change. We could raise awareness, we could raise money to fund research/new medications, we could stay up to date on all of the new medical advances. Six weeks after Gavin was born, we walked in the Great Strides walk and raised over $7,000 nationwide.
We continue to raise Gavin just like any other child. He runs & plays, he gets dirty, and he laughs & cries. The first year was tough, mostly because we feared the future. Today, we are thankful for each day of health and never underestimate the most “normal” of days. To us, no matter how big or small they may seem, every single one of Gavin’s achievement’s is noticed & never taken for granted.