On An Enzyme and A Prayer

This is a video of Ruby taking her 1st enzymes. She has since learned to "sneeze" them out, her talents are already abounding. 

 

The pressure was on. As soon as they weighed our baby girl in the delivery room we whooped with joy that she was 8 pounds 12 ounces. Our biggest baby! This weight would be her starting point on a pressure filled, carefully monitored, always analyzed CF weight gain journey. We knew it was normal for a baby to lose a little weight after they are born so we were glad she had some wiggle ounces above the 8 pound mark. She left the hospital at 8 pounds 4 ounces. The next week at her first CF clinic visit the scale said 8 pounds. I started to freak out just a little. The nightmare of course would be that she would continue to slip in weight. We had our 2 week check up with the pediatrician the next week so our CF team said, keep feeding her like you are now and in a week we will see what the scale says and re-evaluate if needed her feedings.

Like many baby’s, Ruby was so so so so so sleepy when she was born and was a lazy nurser. Three of the days that Frank was home with me after the baby was born I was sitting and nursing literally 10 hours each of those 3 days. Also normal for a newborn. But each time I sat and nursed I would fill with more and more anxiety about how much she was getting and if we would make any progress on the scale at this rate. I had one week to make a mark in her weight. Would we be able to do it?

I couldn’t help but think about our other 2 kids with CF at her age. Maelee wasn’t even diagnosed with her CF until she was 6 weeks old and in that time frame she gained weight at the normal, non CF child rate on breast milk alone. Then after diagnosis and after she started enzymes her weight shot up like a rocket, like steadily above 90^th percentile for the full first year. Each time we would talk with our nutritionist at the CF clinic she would start our visit with “you need to realize and know that Maelee’s exceptional weight gain is NOT normal for a CF child.” Even with the nutritionists steady reminders we didn’t realize how not “normal” Maelee’s exceptional weight gain was until we struggled so much with Orson’s weight gain 4 years later.

So there I sat in my gorgeous glider rocker, (that someone that goes to church with my Mom gave to her to give to me and my Mom and I re-upholstered together over the summer before the baby was born), thinking about these 2 very different paths. We had planned on letting Ruby learn to nurse that first week without shoving salty, enzyme filled applesauce into her mouth before each feeding (since babies can’t swallow pills you give them their enzymes without the capsule but rather dumped out onto a tiny dollop of applesauce, they also need extra salt everyday 1/8^th of a teaspoon so you need to sprinkle that on the applesauce little by little with each feed as well DON'T even get me started on the foul smelling liquid vitamins they have to take that stain everything they touch). When we started to notice the oil in her diapers we knew we needed those enzymes sooner than later (when a person with CF is malabsorbing one of the signs of that triggering the need for a dose adjustment in enzymes is literally orange oil in their stool).

So we started enzymes 3 days after she was born instead of 7. I started pumping everything and adding formula to whatever I didn’t get to give her at least 3 or 4 ounces with each feed. I felt sick as I walked back to the room with the nurse at the pediatrician’s office the next week. She told me to undress Ruby for the scale. My breath was held. I would be happy with anything above 8 pounds, just please don’t slip further down. We had included Ruby in every family prayer, the kids in their personal prayers, and Frank and I in ours as well. My mom had put Ruby’s name on the prayer roll at the temple. The nurse kept tapping the scale back and forth to finally land on 8 pounds and 12 ounces. She did it! She got the help she needed and she gained her birth weight back! My poor pediatrician wasn’t expecting to find me in such an emotional way when he came in the room for Ruby’s exam after her weight check. Luckily the poor guy has probably seen his fair share of new mom’s crying in his office. Tears of joy of course, gratitude, and release of anxiety. Every day since the appointment I watch her and am sure that I see her cheeks getting a teensy but chubbier each day. I hope they are anyway.

Sorry Ruby but unfortunately the pressure is on like it or not. But either way the scale goes we know you aren’t doing it alone. You are a daughter of a Heavenly Father who loves you and you love Him. He will be right there with you for all the ups and downs on that darn scale.