But, Why? Pt. 4

2021 was supposed to be better than 2020, right? We had one heck of a January 2021. We thought we had all of our bad for the year in that one month and we were done for the next 11. Again, the Lord had different plans.

One day, while Bryson was in quarantine, and Brooks and I were at Camp BGE, I got a call from the pediatrician. Strange, but also we’d talked to so many doctors since birth that I didn’t really think twice about it. Our pediatrician, whom I adore, he’s wonderful, was calling to tell me about the newborn screen Brooks had done before we left the NICU.

In the state of Tennessee, this blood screen tests for a range of different potential diseases that a child could be born with. We were told before we left the NICU that we would have at least one abnormal screening from the time Brooks wasn’t allowed to eat, but was instead getting nutrition from an IV, so when we got it in the mail we threw it away and went on about our business. Well, the pediatrician had called to let us know the results. He said there was an abnormal finding, but not to worry. (Parents, let’s just collectively laugh at that statement.) It was probably just a red flag, they’d run some tests and rule it out and all would be fine. He was convinced it was from the NICU stay, as we all were, but also deep down I was freaking out. My husband wasn’t with me, I have this fragile newborn asleep in my arms recovering from major abdominal surgery, and I’m trying to keep it together on the phone and sound unfazed…FREAKING POSTPARTUM HORMONES! I get off the phone and go to my mom crying. She, being a mother herself, is worried and looking at the baby like, “Whew, okay..he’s in one piece…why are you crying?!” The words “cystic fibrosis” kept ringing in my head. There was a red-flag on the cystic fibrosis panel of the screening. She said, “He said it’s probably nothing. Don’t worry. I’m sure they’ll call to set up the testing and it’s going to all be okay!”

Well, we were curious. What exactly is cystic fibrosis? You know when doctors say, “Don’t Google things,” maybe I should start heeding those warnings. I had to literally stop reading and put my phone across the room. Not my baby. Nope. Not happening. We’ve been through enough. Not even going to worry about it. My mom then comes in with a, “It says both parents have to be a carrier of the mutated gene. Also, it’s genetic. I don’t know of anyone in our family that has this. I bet it is just a red-flag.” So we start texting family members asking if anyone can remember someone that has cystic fibrosis in the family. No one can think of anyone! #ItsARedFlag

Fast forward to February 1st, 2021.

I had been in touch with the children’s pulmonology center in town. They asked us to come in for a visit, said we could have two visitors for the patient, to check in when we got there, the whole 9-yards. We go in thinking Brooks is going to have a sweat test completed. This is one of the most efficient and fool-proof ways to test for cystic fibrosis. We’re thinking it might be pretty cool to watch this test, it’s noninvasive, we’re going to watch them make our baby sweat, catch it and send it off to the lab.

We’re in the room and in walks the lead doctor. Super nice man! Very knowledgable. He starts to give us a history lesson on cystic fibrosis. Talking about two mutations specifically. I hadn’t done any research on this part, so I’m hanging on every word. A little confused on this history lesson, but also amazed at all of the information. Bryson stops him and says, “Wait, so does Brooks HAVE cystic fibrosis?” The response, forever engraved in my brain, “Yeah…did no one tell you?” *MIND BLOWN*

I swear my husband turned 14 shades of red as I shot him a look. All I could think was, “Please calm down. Don’t blow up.”

I, on the other hand, had this overwhelming sense of calm….maybe it was all of the blood rushing from my head. But it was a peace like I’ve never felt before, and still to this day have not experienced such a feeling. I am fully convinced God was in that room with us.

You could tell the doctor was in shock as well. He was apologetic and couldn’t believe no one had told us yet. This man apologized 10 or more times in a 5 minute span in the midst of conversation. But then agreed that no one wanted to be the bearer of that type of news. The type of news that is a death sentence for your child. We told him we thought we were just coming in for a sweat test and he assured us those do not happen until about 4-months, but that Brooks would have many of those to come in his future. The doctor frantically searched for the notes in the chart that said Brooks’s exact mutations. Because the newborn screen was able to detect both mutations, we did not have to wait on the sweat test to confirm the diagnosis. DF508 and G551D. Those were his labels. His identifiers. We were numb. We met a few more team members that day. They told us if we were to look anything up to look at the CF Foundation Website and that’s it! They would give us information at each visit so not to overwhelm us with information all at once because a diagnosis like this was a hard one to take in.

We left that appointment with our next appointment date in hand and some literature of how to care for our newborn that has cystic fibrosis, our CFer. I remember getting in the car, texting our parents and saying something along the lines, “He has cystic fibrosis. Not exactly sure what this means.” Bryson looked at me and said, “What is cystic fibrosis again?” I mean they had just told us, but did we REALLY know what this was?! By definition Cystic Fibrosis is an inherited life-threatening disorder that damages the lungs and digestive system. Basically, the CFTR gene is mutated and doesn’t work correctly. Cystic fibrosis affects the cells that produce mucus, sweat, and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts, and passageways.

I began to Google, but only on the CF Foundation page. Many times I had to stop and start up again because of the information. It’s all too much to handle at once, especially in the beginning.

Here came those ugly two words again…. “But, Why?”

-This picture is in the office minutes before we got the diagnosis.-

*I do a lot of posting to Facebook to keep our family and friends up to date. I would like to keep posts here even so that I never lose them. This was post #1 of our CF Journey:

“We found out today our precious boy has cystic fibrosis. We are still researching and aren’t exactly sure what this means for him, but we know God has a plan for Brooks. We know that advancements are being made rapidly and we will be his biggest advocates and supporters through it all. When we asked if he might be looking at lifetime limitations the doctors assured us, “the sky is the limit!” It might be a day-by-day deal over here, but we can’t wait to see what greatness this little guy accomplishes, even if it might mean a bumpy road due to this new diagnosis!

To say that 2021 has been some what of a rough start would be an understatement… but as always, God is good ALL THE TIME! If He’ll bring you to it, He’ll bring you through it! Let’s get ready for a wild ride because I don’t see anything keeping our little warrior down.”


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