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The Prologue

Jack is my second little boy, so I had an inkling of what to expect on his birthday — one of the most incredible days of my existence. An unparalleled, beautiful, disgusting, shocking, bloody, terrifying, euphoric, and exhausting day — and I’m just the Dad. It’s the most epic journey imaginable, packed into an unrelenting, yet brief moment in time. I’ve had some epic journeys in my life, but nothing compares. Not surfing the biggest wave or climbing the tallest mountain. It’s a moment that changes you and your life, forever.

By comparison, in the days and months leading up to Wyatt’s birth, I suspected as much, but I didn’t truly know. You can’t know what it’s like to have a child until it happens. The suspicion of such a life-changing day can overload your mind with endless thoughts, concerns, hopes, and fears about the unknown. In my case, my brain short-circuited — see vestibular neuritis. Thankfully, in the months leading up to Jack’s birth, I kept it together.

However, I don’t know if it’s any better having the comparison of your first child’s birth to draw upon. The past experience still doesn’t help ease the anxiety — and yes, there is anxiety. Lots of it. There’s lots of excitement as well. But the two emotions seem one in the same. Like driving up to your favorite surf spot when the waves are double-overhead. You’re excited, and you’re scared shitless at the same time. The birth of your child is the day of days. Life has a handful of days that shape that you as an individual. In some cases, you don’t realize it’s a life-changing day until that moment is upon you. In the case of your child being born, you’ve got a timer, ticking down down the minutes until the life-changing day arrives.

Fortunately, Jack’s birthday couldn’t have gone smoother. Before Wyatt, I had nothing to compare against. Now, by comparison, Jack’s birth was a stroll along the beach compared to Wyatt’s. No less beautiful, but much less terrifying.

The Day

On January 18th, we dropped Wyatt off with his Mimi at 7:15am. Within another 10 minutes, we were already checking in at the hospital. At this time, there was lots of deja vu — passing thought familiar doorways, and seeing the same hospital art on the walls.

The check-in process flew by, and we were shown to our room before 8:00am. By 8:30am, Dr. Gard had already visited, and broken Emily’s water to help initiate labor. During this time, the nurses were buzzing around, hooking Emily up to machines, asking her questions, and typing information into their computers. All pretty standard stuff, and I mostly tried to stay out of the way.

At 9:45am, they started the Pitocin drip to induce labor. Since Jack had progressed and things were looking favorable upon Emily’s exam, they started the Pitocin on its lowest setting. It was at this time that I started to get comfortable, and settle in. I knew what was coming. Waiting. A long wait while the Pitocin did its thing. A little shoulder rub to put Emily at ease. Maybe she would start bouncing on a medicine ball to push things along… Nope! Within moments of Emily starting the Pitocin, intense contractions began. Unlike with unassisted labor, contractions aren’t gradual with induced labor. Emily explains it as, “going from zero to ten within minutes.” After about 15 minutes, she said “I’m ready for the epidural!” I didn’t even know an epidural could be requested that fast after induction had started. Labor came on strong and fast. Very fast.

Unfortunately, requesting an epidural doesn’t mean you get it immediately. There’s quite a bit of preparation. And rightfully so. After all, they are shoving a huge needle into your spine to numb the lower half of your body. Let that the reality of that sink in for a moment. In both cases, with Wyatt and Jack, I was given specific instructions by the nurse to sit on the opposite side of the room, where I couldn’t see the epidural being performed. With Wyatt, I didn’t give it much thought. With Jack, I realized this was probably to prevent me from freaking out and interfering with the process.

All the while, Emily is in extreme pain, holding on to the nurse’s shoulders, and breathing into her chest every time a contraction would come on. Meanwhile, the anesthesiologist was cleaning needles, mixing concoctions, and taping a plastic tarp to Emily’s back. All I can do is sit in my little corner, and pray the pain stops for her soon.

The epidural was administered at 10:30am. It doesn’t take effect right away — as the anesthesiologist explained to Emily, “It’s not like a light switch. It’s like a sunset.” Within about 15 minutes she felt relief. There was a moment to breathe.

Okay, okay. We’re back on track. Now, I know what to expect again. Emily is getting comfortable as the drugs take effect, and trying to rest up for Jack’s big moment. She plans to take a little nap while we wait for labor to progress. I’m going to relax while she rests, and maybe work on some NFT designs… wait! NOPE! Here we go again!

The nurse says, “Before you take a nap, let me examine you to see where we’re at.” She examines Emily, and promptly informs us that it’s already time to push. The epidural had just barely taken effect, and the nurse was already calling the doctor back into the room to prepare for delivery. This was all happening very fast. By 11:20am the doctor was back in the room, with her metal tray of terrifying tools. And I was at Emily’s side, brushing her hair and holding her hand as she began pushing.

As with everything about Jack’s birth, the pushing was a very different experience than with Wyatt. With Wyatt, the pushing seemed endless. Like no progress was being made. Emily would give it everything she had and more, and Wyatt would move a fraction of a millimeter. I could see a look of hopelessness on Emily’s face — it felt like Wyatt was never coming out. I could see the same look on the doctor and nurse’s faces — like they didn’t know if Wyatt was coming out. I heard the doctor say quietly to one of the nurses, “We’re going to try one more thing…” Meaning, a C-section was just around the corner. With a little extra intervention and just over 2 hours of pushing, Wyatt finally made his grand entrance.

On the contrary, everybody knew Jack was coming out — soon. Serious progress was being made, and Emily seemed empowered during the pushing stage this time around. Within moments I could see Jack’s hair. Then his little, purple face. Then, a slight wrinkle — Jack’s umbilical cord was wrapped around his neck. To be honest, I didn’t really know what I was seeing at the time. The doctor and nurses remained calm. So, I didn’t see any cause for alarm, and neither did Emily. The doctor quickly grabbed some crazy looking scissors, and calmly cut the cord from Jack’s neck without a word. We didn’t realize this until later, but the experience startled our doctor enough that it made a memorable impression on her. However, the team handled it so professionally that it was never a concern for us. And overall, the team of nurses and doctors were phenomenal at Sarasota Memorial.

At 11:48am on January 18th, 2022, our second beautiful little boy, Jack Shepherd Morgan, was born. It must have been a record time labor and delivery — a total of 2 hours and 2 minutes labor. The recovery after birth for Emily was much faster and smoother with Jack than it was the first time around with Wyatt (Wyatt being a 8 lb 11 oz “sunnyside-up” baby, and Jack being a 6 lb 10 oz “nugget”, as Dr. Gard affectionately called him throughout the pregnancy). The next day we were home with our sweet, little boy.

The Time Until Now

Jack is seven weeks old now. And let me tell you, having two babies under two-years-old is a shock to the system. We’re living in pajamas, trying to get sleep when we can. We’re not going much of anywhere, unless we have to. The focus has been keeping Jack AND Wyatt healthy and happy while transitioning into new roles and a new way of life. It’s exhausting. However, in the moments when I’ve lifted my head out of the fog, one thing is very clear — this is the best time in my life. And I’ve had a damn good life.

Jack and Wyatt. Already best buds.

Last week it felt like the fog was lifting. We’re getting out of the house a little more often, taking the boys to the park, starting our morning walks again, and generally learning how to function on minimal sleep. Then, a storm rolled in at the end of the week…

Thursday began with Emily taking Jack to the doctor for some lingering cold symptoms. All seemed well, until the doctor listened to Jack’s heart. He heard a murmur — which is a pretty freaky thing to hear about as a parent. However, he went on to explain that it can be very common in newborns. And that it will likely resolve on its own, but we should still get it checked out. So, we setup a cardiologist appointment for Jack, and assumed that was our only bad news for the day. Wrong!

Later that evening, we received a call from Johns Hopkins All Children’s Hospital in St. Pete. Not just any call, a choreographed call, in which they asked to be put on speaker, and requested that both Emily and I were present. The doctor proceeded to explain that Jack’s routine newborn screening came back positive for Cystic Fibrosis, a rare genetic disorder that effects the body’s respiratory and digestive systems (further information about Cystic Fibrosis can be found here). They scheduled a sweat test for us the next morning to confirm the diagnosis, as well as several other consultations.

So, we got even less sleep Thursday night, and awoke early Friday morning for our drive to St. Pete. The sweat test confirmed our fears — Jack had officially received a Cystic Fibrosis diagnosis. The rest of the day was a blur, filled with overwhelming information. But we met an amazing team of doctors that will be heavily involved in Jack’s life moving forward.

It was pretty devastating news, and certainly not something you would ever wish for your child. However, we’re coming to terms with the reality of it all. Fortunately, I wasn’t entirely clueless about the condition. I have some knowledge and previous experience with Cystic Fibrosis.

I had an aunt (not blood related) that passed away from the condition when I was young. However, that was nearly 40 years ago. Research, treatment, and life-expectancy has improved significantly in that time. In the 1980s, when I was born, the average life expectancy of a child with CF was 15. These days, average life expectancy is in the 40s, with many adults living well past that in their 50s and 60s. And many doctors are hopeful there will be a cure within the next 10 years.

I also have a buddy in San Diego with Cystic Fibrosis. We have gone snorkeling, surfing, and hiking together in the past. He’s a great guy with a normal life, and nobody would ever be aware of his condition, or the treatments he has to undergo on a daily basis in order to stay healthy.

As the doctors informed us, all the dreams we have for Jack remain the same. He can still be active and play sports, go to college, have a career, fall in love, and even have children. However, his daily routine and life will be a little different than most, and we may have some scary moments ahead of us.

As of now, Jack’s treatment begins with salt. Basically, Jack loses too much salt in his sweat, and it needs to be supplemented in his diet. So, his milk is a little saltier than the average baby. The theme will persist throughout his life. Super salty foods are good for Jack, and being in and around salt is good for him as well. That’s good news for me too, since I will certainly be taking my boys surfing every chance I get. Not only will it be super fun, the salt water will be therapeutic on a whole new level.

In the months to come, Jack will receive more supplements and enzymes. When he turns a year old, he will begin using an inhaler and “the vest” — a vibrating vest with a hose attachment that shakes loose and removes the mucus in his system. He’ll have to perform this treatment twice a day, every day, for the foreseeable future.

There are some “miracle” drugs that have been developed for Cystic Fibrosis in recent years. In particular, Trikafta. However, Jack falls in to the 10 percent of CF patients that does not have the common F508del Cystic Fibrosis mutation. There are a few thousand Cystic Fibrosis causing genes, but both mine and Emily’s CF genes are quite rare. In fact, the likelihood of our genes coming together to cause Cystic Fibrosis is so rare, there is very little data on Jack’s particular variation of the condition. As a result, such medications may not work for him — yet. But we’re hopeful a better medication and treatment will come in time, and even better yet — a cure.

Our lives were changed forever by Jack’s birth, with or without Cystic Fibrosis. It’s just a detour from where we thought we were going. One thing is certain, managing and treating Cystic Fibrosis will be a new chapter in our lives, and we will become more involved with the CF community.

3 Comments on “Jack’s Birth Story and Cystic Fibrosis”

  1. Well done and well written David, my Son-in-Law. We are all in this together and I love you, Emily, Wyatt, and Jack to the moon and back.
    Love
    Dad

    • Thanks Dan! We definitely are. It’s awesome that we all have such a great support system of family and friends. I love you too!

  2. Have absolutely beautiful and well written…. Your children could not be more blessed than the family they were born into or surrounded by…. All our love and prayers go out to you all… looking forward to seeing you all hopefully soon….

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