An Update On Baby Elken

Never in a million years did I imagine we’d be sharing that our new baby has a rare, life-threatening, life-shortening disease. But we are. 

Here’s just a part of the story.

Delivery

After a beautiful birth at home with the advice of our wonderful midwife – a few hours after Elken was born we headed to the hospital so his breathing could be evaluated. He needed a little help clearing the fluid from his lungs & as challenging as it was in many ways… had a pretty uneventful NICU stay. 

We were so excited and relieved to be back home and all together. We thought we would spend the weeks leading up to Christmas adjusting to newborn life. Looking back, even in these first couple of weeks my intuition was suspicious of something being a little off. I’ll never forget in those weeks how he found a way to tuck his little head right into the crook of my neck anytime I held him as if he was sheltering under me and protecting himself from what was going on inside his body. I’ll never forget it. 

Diagnosis

After three weeks we received a devastating diagnosis from the newborn screening. I will never forget this day and the weeks that followed. We were sitting in the waiting room of the pulmonologist’s office completely clueless. Truly, we were hoping for and were almost sure it was a fluke. After all the testing we had endured, how could we have not known?

The pulmonologist walks in the room & the first thing she said – with such finality – Elken has cystic fibrosis. 

I didn’t know it was possible to feel my heart sink to such a depth as mine did at that moment. The level of extreme sadness I felt in an instant is really difficult to describe. I was overcome with sadness and guilt and true devastation because I thought this diagnosis meant Elken would live a very sick life and die early. I was sad to think of him having to endure any level of hardship that was so unfair to him. And guilt … because, how could I not have known? How?

Processing

The days that came after are an absolute blur.  We spent every day crying. That first week was just so heavy. So many tears. All day and all night long. 

Co-existing with an extreme sadness beyond anything I’d ever felt before also was an extreme dedication. I watched his little body struggle through malnourishment in those first few weeks of life. I was determined to be who and what he needed me to be as his mother … nursing him and nurturing him back to health. It was extremely difficult – but we did it. And I saw the light come back to his eyes and the shape of his face return to what I knew it should look like. It is heartbreaking to look back at pictures knowing that he really was silently suffering inside, but showing us that precious little personality with a smile on the outside despite it all. 

During the second week, I spent most days crying. We also spent all day and all night educating ourselves on what this diagnosis means, how we can advocate for him, and how far treatments have come because of parents, scientists, and researchers who have gone before us.

I watched this little baby endure test after test and take medications that no newborn should have to take. He faced every challenge and procedure, then come right back to snuggle into me or Loren. I felt how important it was for us to fight for him and to commit to this journey with him & to never let our sadness get in the way of our actions. 

By the third week after diagnosis – I was feeling way more optimistic – but still sad, still angry, still heartbroken, and also so in love with him. The highs and lows were something else. 

Why I’m Sharing Now

There are many reasons why I didn’t want to share this sooner – but one of them was because I never wanted to be misunderstood. Being Elken’s parents is the absolute greatest gift. After processing this diagnosis for months now, I’ve realized so many things. There is no separating him from this disease, that’s what I really wanted for him. And there isn’t a single part of us that wants a world without him in it. Elken is an absolute gift and I would not trade it for anything. 

Another reason I didn’t want to share was to protect my energy. I was so devastated – I did not have the emotional or physical energy to talk about this diagnosis and what was going on while still being the mother and caretaker I needed to be for Elken and for Roux. I couldn’t do both. And my children needed all of me. We told immediate family and that was it for many weeks. I would’ve gone even longer, but Loren rightfully wanted to have others praying for Elken, too. 

We have such an amazing team of professional support for Elken and it makes me so grateful. He sees many different specialists and therapy modalities who have each been such a blessing and encouragement to me as his mother. Our family has rallied around us & him and it means the world. 

So what is cystic fibrosis and what does this mean for him? 

It is an invisible disease. This means, looking at him now, you’d not be able to tell he has cystic fibrosis. Not too long ago, the life expectancy of someone with CF was in the 30s. Now, it’s in the 50s and before long it will most likely change to a normal life expectancy with the new medications that will be available to Elken in a few years or less. 

Elken’s pancreas is severely insufficient. He has to take enzymes before any food. So any time he nurses (day or night) he has to have enzymes first – delivered on a spoon with applesauce. He also has to eat 1/8 tsp of salt every day. Yes. A newborn, eating salt is as horrendous as it sounds. He takes a vitamin every day that has vitamin A, D, E & K since it can be difficult for him to absorb all the fat in his diet – even with the enzymes on board. 

We do manual CPT – as airway clearance for prevention twice a day now. Nebulizers as needed. As he gets older, he will be fitted for a vest that does his airway clearance and he will do nebulizer treatments multiple times a day to keep his lungs clear. 

Raising Money For Cystic Fibrosis

It feels incredibly vulnerable to welcome more people into our world. My maternal instinct is to shield and protect him. We don’t want anyone looking at him and seeing a sick baby. We want to empower him and advocate for him. But we also want to spread awareness, ask for support and ask for prayer. For Elken, of course, but for Roux too – this has been a lot and he has been the most incredible brother.

We’ve designed a shirt for all who want to show support & be a part of Elken’s village and we would love for you to grab one! All proceeds are going to the Cystic Fibrosis Foundation as we fight for a cure. Thank you in advance for supporting our family and all the other CF families!

We are getting together on May 20th at Zoo Tampa to walk together for Cystic Fibrosis and we would love for any local friends to join us! We are all wearing our Elken’s Village tees! You could be a virtual walker too if you want to support from afar.

Lastly, we’d love your prayers! We are learning as we go & praying for wisdom and guidance every single day. Would you pray for Elken’s little body to keep growing, stay healthy, and thrive?

I’m sure I’ll be sharing more of our journey – but if you’ve made it this far, thank you for caring about our little angel baby!

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