New Routines

In many ways, life is pretty much the same. We are still the blessed parents of two beautiful children, who sometimes seem to make it their collective mission to drive us to the brink of insanity. We still struggle to keep up with the vacuuming and the bathrooms and the laundry and we still care less about those things than we probably should, but we play in the floor a lot and that just seems better. We still struggle to come up with a dinner plan in the evenings, even if we've been home all day, and we still frequent Chik-fil-A. We still have bottles to wash and formula to mix and stories to read and toys to fix and the list goes on. Life is pretty much the same.

We just get up a little earlier to do chest PT in the mornings, to keep her lungs as clear as they can be and prevent infection. We add thick, smelly, stain-inducing, bright orange vitamins to her first and last bottles of the day, because her tiny body has a hard time absorbing vitamins A,D,E and K. We add 1/8 tsp of table salt to her formula for the day, because she sweats out more salt than most babies do. We mix formula at even more intense concentrations, because she needs more calories to cling to the bottom of the growth curve, and hopefully to start climbing further up it. We empty capsules of pancreatic enzymes into tiny quantities of apple sauce and scrape them onto the roof of her mouth before each feeding, because her natural enzymes are stuck in the sticky mucous of her pancreas and she doesn't digest well without extra help. We give extra syringes of medicines like Zantac for reflux and antibiotics for cough when needed. 

Life isn't all that much different. We have just had some extra items to add to the daily routine here recently. We are working out a system that is manageable for us, and I think it's going pretty well. Nora is a champ with all of it - we really couldn't ask much more of her. She occasionally fusses through PT or tongue-thrusts medicine right back out of her mouth (because she is still young enough to have a tongue thrust reflex!), but she takes it all without much protesting. She is gaining weight, albeit slowly, and she is a MUCH much happier baby. Sleeping through the night now, too! 

This happens to also have been an extremely difficult month of work for me, working all hours of the day and night and averaging 70 or so hours a week. I finally have a few days off right now, which has allowed me to focus on snuggling my girl and being here for her. It has been so very difficult, being away from her right now. My poor son misses me (and tells me at least 5 times a day, even when I'm home), which is simultaneously heartwarming and heartbreaking as well. My poor husband has been left to figure a lot of this new stuff out on his own, to comfort our son, to take care of our daughter's extra needs, to cook and clean and mix formula and read stories and give baths... And still he somehow manages to be concerned with packing lunch food for me. Mind-blowing.

It all amounts to a difficult time of transition for our family, but also a beautiful time of perspective-shifting growth and self-sacrifice, and yet another opportunity to experience His awe-inspiring Grace. There's no other explanation for the way that we are making it through this crazy mess. This is the work He has laid before us in this season of our lives, and we are finding that, with the right perspective, we can approach it joyfully and with great anticipation for the blessings that are to come. Not because God "owes us" after all this, but because we are learning (first-hand) that His greatest blessings naturally flow out of life's struggles. 

When the tests are wrong

Medical tests always come with a caveat... They are never 100% accurate. There is always some margin of error, a "false negative" or "false positive" rate. In medicine, we generally trust them anyway. We are aware of the ones that are particularly dicey, and we take those results with an appropriately sized grain of salt when evaluating a patient and making treatment decisions. But there are so many tests that we have grown to trust almost without a second thought, and that can be a dangerous thing.

The state newborn screen is one of those tests that seems pretty legit. Most babies are fine, and most of them have a normal newborn screen (heel stick or PKU, as it is often referred to), and we confidently move forward with that negative result so long as the baby is doing well. Nora didn't do so well initially, and so we questioned that negative newborn screening result. We know that Ben and I both carry defective copies of the gene for Cystic Fibrosis, and she wasn't gaining weight very well (the typical presenting symptom of infants with CF) so we worried. Her condition was otherwise not terribly concerning for CF, so it was low on the list of possibilities, but it was always there, gnawing away at us. We had other testing done, and it looked like her slow weight gain was due to a food intolerance. We settled on that diagnosis and moved forward with special formula, and she has been thriving since - gaining weight like a champ. But along with that work-up, we had thrown in a CF gene test, just to be sure. Just to take that possibility off the table. The turn-around time for the test is 28 days, so we waited a long time.

Then on Thursday evening, I got a call from our pediatric gastroenterologist (who is also a dear friend of mine). She didn't quite know how to say it, so she just said it. "The test came back positive for CF." 

There it is. Our sweet baby girl has cystic fibrosis.

We cried for an hour or so. We bemoaned the utter unfairness of it all. We questioned why on earth we can't seem to catch a break when it comes to the health of our children - probably the single most important aspect of our lives, second only to our relationship with God. We wondered why, oh why, did this have to happen now - in the midst of my toughest rotation of residency, at the beginning of a 13-day stretch without a day off? 

But then we remembered... Our hope is in Him. Our hope cannot be in our children's health, or in an easy work schedule, or anything of this world. All of those things will fail us at one point or another (or, seemingly, at every turn!). But God is for us. He has known about this diagnosis since time began. This isn't a surprise to Him, and He already has it under control, even in the midst of this crazy time in our lives. We don't have to have it all together, we just have to trust that He does. We just have to be all that Nora needs us to be, to keep her healthy, to advocate for her, to love her just as we have been loving her. 

And as my sister-in-law, an experienced CF mom, reminded me... Nothing has changed. She is the same baby that she was yesterday. She has had CF since she was conceived, we just didn't know it. She is still going to smile her same smile, need her same needs, melt our hearts, work our nerves, grow and thrive and play and laugh... She's still ours. Nothing has changed. We will just be adding some new medications to her routine.

We will be sure to keep you all updated as we navigate this new chapter, and we would appreciate your prayers and encouragement along the way. Nora will have her first appointment at the Johns Hopkins CF Center on Monday.