The Elephant in the Room (CF Results!), Pediatric and Postnatal Care

 Disclaimer: This blog post is in partnership with Atrium Health. All opinions are my own. 

I know you all are wondering about that elephant in the room. The lingering question I have yet to answer on Roman's CF testing. So here you go - the update you've been waiting for!

While Roman spent his early days in the NICU, I had a small voice in my head wondering if his issues were stemming from CF (even though I think it was a fairly common issue that landed him there...rapid breathing due to fluid in the lungs from a quick birth, then low blood sugars due to working hard to breathe initially). The nurses kept commenting on how the leads/sensors wouldn't stay on his skin, and I grew curious if it was due to having salty skin. For those wondering what I mean here - individuals with Cystic Fibrosis lose salt from their body due to the defective genes, leaving them literally with saltier skin (this is why the sweat test became a diagnostic test for CF - it's measuring the sodium chloride in sweat). So just like with Tessa, we may have kissed his face (maybe even licked him) a million times to determine if he tasted salty. And just like with Tessa, we anxiously awaited that first poop (to confirm no bowel blockage - which is another possible CF complication).

But before we left the hospital his newborn screen results came back. And guess what, it was negative for Cystic Fibrosis! We knew this wasn’t a fool-proof test, as the newborn screen just tests the top percent of babies with elevated IRT levels (which is not just driven by CF). Knowing this was likely a good sign, but not a definite "all clear", we waited on the genetics piece to come back from the cord blood we collected and sent off.

We chose Levine Children’s Charlotte Pediatrics for our pediatrician as they were highly recommended by Sienna's pulmonologist. Roman was slow to grow initially, so we had an extra weight check in the beginning until his gain picked up. He was also a bit yellow, so we did bilirubin testing (we had levels checked a few times in the NICU as well).

Talking with multiple people, it sounded like "37 weekers" were sometimes slow to gain at first due to being lazy eaters initially. But we hit a turning point, where he became less sleepy and took in more - and boy he plumped up fast! Eating more helped his bilirubin levels as well, and his coloring slowly improved. By one month old, he had gained almost two pounds from birth (up to 8 lbs 8 oz). 

At his one month wellness appointment, I suspected he might have a dairy intolerance due to constant spitting up (after every feed), gnarly diaper rashes (with blistering), and horrible skin acne/rash. I talked with his pediatrician, Dr. Bozin, about these issues, and we tested his poop for blood- which came back positive. She agreed I should try removing dairy from my diet to see if he was CMPI (cows milk protein intolerant).

Due to a variety of factors, the genetics testing took A LOT longer than we originally expected. Around the six-week mark, the lab requested a saliva swab from me to re-confirm the blood sample was Roman's.  On September 30th, at almost eight weeks old, we received the final results from the lab. Roman is just a CF carrier! He is a carrier of the gene Joe has (DF508), but not the gene that I have (opposite of Tessa, who is a carrier of just the gene I carry).

From here on out, we get to just follow the typical newborn wellness routines. Yay! 

At his two-month wellness check, his spitting up, skin and diaper rash had been improving, so the dairy free diet recommendation remained. He measured 98% BMI at this appointment! Weighing in almost 12 lbs, he almost doubled his birthweight. 

 

So here we are, five months old and doing great! I received so much support in those early months, through his pediatrician, and from follow up from nurses once we left the NICU. There were multiple calls checking in on us ensuring I had the resources and help I needed during that fourth trimester. I had an easy six-week post-partum check up with Charlotte OB/GYN and was able to cancel the genetics appointment proactively set up for Roman should he be diagnosed with CF. Roman has been a breastfeeding champ the entire time, and we have had a pretty seamless first few months. I think we’ve officially hit our groove as a family of five!