Monday, July 20, 2015

Haunted By PBS : I Want To Change My Answer


       Last October I was able to participate in a market research study. It paid me $200 to spend a few hours on a bus with 4 other women in my similar age bracket. The bus drove us around to a couple of large chain retail stores to compare their Halloween displays and discuss what we thought about them. I have found when I finally make it to the end of all the preliminary questions on the surveys for these studies I know I have made it into the group they are looking for when the over-the-phone interviewer gets past what brands of laundry soap I use and finally asks me a super deep “yearbook question.” What moment in history would you like to go back to witness firsthand? What would you tell the high school graduates of today if you could give them one piece of advice? For this Halloween candy display study the question was, "if you could live in any era of time other than what you are living in now which would you choose and why?"

        It was an easy answer for me. I have dreamed of what it would be like to live in the late 40’s early 50’s post WWII era for a long time. I love the hair, clothes, homes, décor, etc and have thought it would be fun to live in a time like that. Then this past year I was thrilled to find the PBS show “Call the Midwife,” which takes place in the 1950’s. I quickly became hooked on the series. Not only did I love how the stories of the characters and women delivering babies intertwined with interesting social issues but also it was so cool to see the hair, clothes, homes, and décor I love while watching.

         There is an episode of the show that has haunted me. Haunted is dramatic, I should say instead, it has given me a reality check in why I am extremely grateful I don’t live in 1950. It is the CF episode. The family being spotlighted in this episode has a mother who has delivered this new baby, her second, and is really struggling with it. She is constantly feeding the baby, can’t keep up with his diapers (of which she thinks are strange diapers, and not at all like her first baby), and can’t satisfy the baby despite her best efforts. She can’t keep up with the amount of diapers and bottles. She is made to look like in the beginning of the episode, perhaps a mother who just can’t hack this second child, or maybe has post-partum depression, etc. Then at the end of the episode it’s discovered that the baby has CF and is experiencing all the symptoms of having a pancreas that isn’t able to do its job and the Mom isn’t crazy at all but has a baby with a body that needs medical help to function without severe abdominal pain.

        I have been thinking a lot of that episode of Call the Midwife while I sit and feed Ruby. I hadn’t before thought of or been able to see in such realistic light the mothers of CF children from the generations before me. I realized how blessed I am to know how to help my babies. Even in just these past 4 weeks we have seen the difference that going from zero, to one, to one and a half, to now two capsules of Zenpep (that’s Ruby’s brand of pancreatic Enzyme) has made on her disposition and well-being as she grows a few ounces each week. 3 times her dose has gone up in 3 weeks of life, carefully calculated by gram by very educated CF specific nutritionists.  I can only imagine the desperation that I would feel to see my baby clearly in pain, clearly not experiencing proper digestion, and not knowing why or how to help.

         It has made me extremely grateful that I can give her the help she needs for her stomach to not constantly be cramping and aching like it would if she didn’t have her enzymes. I am very thankful that I don’t have to live in the medical world of 1950. That I can instead borrow the hair and red lipstick of the era when I am feeling up to it, and keep the phenomenal medical advances that have been made for my children in 2015. Plus I also get to use disposable diapers, which is pretty incredible too.  
Image result for call the midwife cf episodes 

Thursday, July 9, 2015

On An Enzyme and A Prayer

videoThis 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 90th 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 1/8th 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.