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.  

 

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.

 
 

Please Bless Heaven Not To Miss Her Too Much

Ruby came this week! 8 pounds 12 ounces and 21 inches long which gives her a great jump on the growth chart! 

She is exceptionally lovely and likes to be held close to the heart. Labor and delivery was a unique experience because we were able to do it without and epidural this time. All the other kids I ended up getting one, but always wanted to do it without. It meant a lot to me and I wanted to try again this time. I had a very supportive nurse and a doctor who didn't judge me when I freaked out when it was time to push. Frank was a great team mate. He also didn't judge me during the aforementioned freaking out and when I was flailing around trying to get a grip (both literally and figuratively) and caught him in a head lock he didn't mind at all. 

I thought I was going to have her on Tuesday but all my labor stopped at bedtime. The next morning Frank had been at work for about an hour when I called him and told him I was going to head to the hospital because I thought I had a "high leak" like I had with my 1st & 3rd baby. Frank hadn't eaten breakfast yet by the time I called him and I wasn't allowed to eat until the baby was born. He refused to eat until I could so all day during labor Frank and I talked about pizza and avoided the food network. I did convince him to sneak me pieces of sour licorice throughout the day when my nurse was out of the room.

As they ran penicillin and pitocin through my iv and we waited for labor to get stronger we were watching the Halloween episode of Duck Dynasty and I laughed so hard my water broke all the way. 4 hours later Ruby was born.

My mom was with me the whole day before I delivered because we knew I would need to go to the hospital soon and she even slept on the couch in case we went during the night. After having the kids all day the next day with them being so anxious for the baby to be born I am sure she was exhausted. She said that after we sent them the picture of the baby and Frank called them to talk about her that the kids wanted to do something to celebrate. The decided that they would play some music. So Maelee played the piano, Charles played his mini table harp he got for his birthday and Orson played Frank's ukulele. Then as she finally got them to settle down and go to bed they all said their prayers. In his prayer Charles asked Heavenly Father to "please bless heaven not to miss her too much." Talking of course about Ruby.     

So yes for anyone who is wondering our house is a wreck. Yes I am combing my "wardrobe" for stretchy pants. Yes our routine has been literally shattered but we have the sweetest little sister in our house to show for it. Everyone is in love. She is amazing. Everyone is fascinated by her. The kids are all clamoring to help her with absolutely anything they can think of to help with. Everyone comes running when her currently blue eyes are open long enough to look into. Hooray for not being pregnant anymore! Hooray for no epidural (I was presented with an official certificate of membership in the no epidural club)! Hooray for families! And hooray that we have Ruby here!

Happiness Is Having A Father Who Cares

Want to read an amazing talk by an amazing man on the sacred role of Fatherhood. Check out this one by James E. Faust in the link below.

“Happines Is Having A Father Who Cares” – James E. Faust          

We are extremely blessed to have a father in our home who cares. He makes us so happy. We all love him more than we can express with words, cinnamon rolls, or homemade cards and ties (although we are trying hard to show it with those things today).

Here are our top 10 father moments from this June to last, though many more than 10 exist. We just narrowed it down as best we could.

1.       Last July Dad got us to Oceanside, California. We had planned the trip months in advance not knowing we would have a family funeral come up. He made sure that on our day at the beach all the kids went on their own walk with him down the beach to collect shells, rocks, and talk. Then he drove straight through from Oceanside, California to Geronimo, Arizona to get us to our Great Grandma’s funeral because he knew it was important to be there.

2.       When school started in August Dad took the day off of work so he could see the kids off to their classrooms.

3.       In September for Labor Day camping he took it upon himself to make special treats for us on the campout. Including brownies inside of oranges and roasted Starburst over the fire.

4.        Dad helped Maelee with her piano lessons because he is the one who knows how to play, not the mama. When Maelee had the chance to play a piece for the “Primary’s Got Talent” talent show he stood beside her providing immense moral support.

5.       The kids were all very grateful and their lives where changed when over Christmas break he introduced them all to old school Star Wars movies. Then to top it off hunted down some clearance Star Wars shirts to wear around for them.

6.       Despite his own desire to go to bed earlier he stayed up until midnight with the kids on New Year’s Eve and made it a fun party with his excitement.

7.       He planned the activities for his families Christmas party and gave us all the opportunity to crack raw eggs on ourselves. In his planning he always is thinking number one of what the kids will think is cool and does exactly that.  

8.       He took us to the MCC rock and gem show and showed us how cool it was to have a geode cracked open right in front of us, and how petrified wood is the coolest thing ever.

9.       He ran 2 half marathons which made the kids so proud and he lets them wear his medals around.

10.   My personal favorite Dad moment this year happened when Orson asked Dad to be the one to stay the night with him at the hospital so they could “camp out and talk all night.”

It is a very special thing to have a loving, unselfish, and kind father to lead our family. I am grateful to him as a wife that he holds the covenants with God he has made throughout his life as highest importance. That he helps me in all I do as a mother, that he forgives me for my mistakes, that he and I can take turns being cheerful and "the fun one" when one of us needs a break. That he can step in and make dinner, pass medicine out, do our CF treatments with the kids, put the kids to bed, or help with homework. That he is there and that he cares. We love our Dad and cheer for all Fathers who care today!

Seeing the Blame Through His Eyes

I have heard from other parents and seen in my own short time as a parent that my own flaws are magnified back to me to see clearer than ever through my children. When these moments of clarification randomly are received through daily interactions and family life it can be very powerful.

Last week Charles and I were sitting at the kitchen table. He quietly mumbled something to me, which I didn’t catch, and then said “never mind.” I asked him to please say it again. He said, “Mom I know it’s my fault that Orson had to get his button.”

What? Seriously? This sweet 6 year old brother is trying to take this on himself?

I assured him that in no way was he responsible, should feel responsible, or was to blame for Orson’s g-tube button, and then asked him why he thought he was. He said that he knew it was his fault because he always ate his food so fast and then would leave the table to play. When he left, Orson would want to leave too and that’s why he didn’t eat very well and that’s why it was Charles fault for Orson needing and getting a feeding tube.

My heart ached for the conclusions that he had drawn, had been blaming himself for, and had been carrying around with him. We immediately talked more about the facts behind Orson’s feeding tube, why he got it, etc so that Charles could understand better that it was absolutely in no way his fault.

That’s when the magnifying glass appeared and I recognized my own guilt, similar to Charles’ that the g-tube for Orson was my fault. It was pretty shocking to me to realize that Charles at age 6 would blame himself for his brother’s physical trial that he had no control of, but I was doing it too – not blaming Charles of course but myself.

 Thinking of Charles and my similar feelings towards this peculiar, foreign, and challenging part of Orson’s life I wondered why Charles and I searched for who was to blame for it, and found that we thought it was ourselves. I realized that these were dark thoughts, not thoughts and feelings of lifting and love that would come from our Heavenly Father, but dark thoughts meant to stop us from feeling joy and having the ability to easily move forward and work. Hugh W. Pinnock in 1989 said, “But to judge, blame, and not forgive always intensifies the problem. It pushes healing further into the future. It is not responsible.”

We needed to focus on being responsible with our thoughts, not going on a blame hunt then wallowing in our supposed findings. We, Charles and I, and especially me as the grown up mother need to ask more fervently for comfort, peace, and help from Heavenly Father to not dwell on blame, guilt, and the darkness in my heart that comes from those feelings for something that I know I wasn’t ultimately responsible for. The g-tube is part of Orson’s life for a while we need to work with it, help him protect it, care for it, and use it for what it can ultimately do, which is greatly improve his health now and long term. I need to look to the light that comes from the Atonement of Jesus Christ and the endless ways that it can start healing now, and not push it further into the future.

I am grateful as a child myself to a Father in Heaven who allows me to learn and grow and use what He gave me through the atonement of His son and my brother Jesus Christ. I am also extremely appreciative to see love through my children’s eyes.

Start of Summer : Pre Baby Wait

6^th birthday. Floating Balloons. Water N’ Ice Snow Cones. Swimming. Painting Walls. Wave Pool. Button Buddies. Pool Noodle Experiment. Cutting socks. Catching Barf. Summer Movies. No cavities. Silver Nitrate. Dinosaur Museum. Gravity Check. Alaskan Cousins. Cassette Players. 3 Hoses 1 Backyard. Eagles Nest. Homemade Ice Cream. Friends. Farm Fresh Chicken Eggs. Read Every Day Challenge. Grandma’s House.

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We have been able to stay happy and busy while we wait for our new sister. She puts on a show at least once daily when she is moving so much that the kids remain fascinated with her and she isn't even here yet.

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I heard about them many times, but due to some concern with the healing of his g-tube site I finally took a nurses recommendation to use "Button Buddies" for Orson's button and made some. We had been taping him up daily with gauze and paper tape and his skin was so irritated that these little button buddies have been a big relief to him. It was a really fun project and one that I hope I can use to make ample to share with others in a coming day. Button buddies are basically a washable circle shaped pad that can be washed and re-used that go around Orson's button and hook together with a snap. They are made from three layers of fabric, cotton sandwiched between two pieces of flannel, and are supposed to wick away any moisture that comes from the button and keep the button secure. The dryer it is and the less is moves the cleaner it heals. I read online of several people doing them for Eagle projects and YW projects to donate to hospitals, a really beneficial service as far as I am concerned. A neat blog called "Hopeful Threads" taught me how to do them. I have big plans for holiday themed button buddies, its going to be big.  

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We have tried a couple of experiments with the tubing at night to prevent it from wrapping around his waist and neck. I read online about threading the tubes through a cut sock on his leg and then taping the tubing to his underwear as well. That seems to help a lot. The GI doctor last week recommended we use a pool noodle cut into a foot long piece to thread his tubing through and said a lot of other families have had success with that in preventing tangles and wrapping at night. So hope has been found!

       

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Me and the kids went to my Mom's house last week and she had recently unearthed a box of cassette players/recorders that my Dad had stashed many years ago. Frank had some old cassettes still at the house so the kids think they are ultra cool listening to their cassette players. One cassette has a lot of Ozzy Osborne, but they are his softer songs so its pretty funny watching them jam out to Ozzy. I am a fan of "Old LA Tonight."

 

My Mom is magical as I have previously stated. Another layer of her magic is her backyard. Its amazing. She is a talented gardener and her yard is filled with beauty but still very playable for the kids. She is so cool in fact that she has three hoses in her backyard. That means one hose for each kid. Grandma's backyard hose parties are one of the kids favorite summer activities.

 

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Some awesome blessings that happened last week. The kids went to the dentist for their summer teeth cleaning and NO ONE HAD ANY CAVITIES! It was very exciting! We will be sending the Easter bunny an extra thank you note for the electric Star War's toothbrushes. Also one night I was up with Orson after he had finished his feed for the night. When he finished in the bathroom I had a prompting to take the trashcan into his bedroom with me from the bathroom. About a minute later he started to throw up. We caught every single drop in the garbage can! It was an incredible blessing to NOT have to clean it up off the bedding, rug, etc. Woo hoo and phew!

 

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The family was very pleased to be able to spend time with our family that lives in Alaska. We miss them so much and tried to squeeze in as many fun memories as we could with them while they were here. Including but not limited to; amazing food, FHE, lots of treats, playing dominoes, Picture-eka, Borax goo, gymnastic ring tricks, play house fun, the wave pool, Star Wars, slumber parties, hair cuts, and more!

 

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Orson had his first adventure with silver nitrate sticks and their use for helping to properly heal his button site and stop the granulation tissue. The GI doctor did it the first time (a light treatment) and the surgeon will do it next week (a much heavier treatment), then its Mom and Dad's turn to learn how to do it at home (yikes and whatever the opposite of woo hoo is, can be inserted here as well).  

 

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Our ward (neighborhood church) has given all of us the challenge to "RED - Read Every Day" this summer, and of course in hopes that it will give us all a boost to continue and/or better our current reading of The Book of Mormon. They made bookmarks with a calendar of the summer on it and the kids are really into it. I am proud of them for all being so diligent on their own to do it. Charles likes to get his done as soon as he wakes up. Orson sees him doing it and asks his brother to help him read his. Maelee sees the boys doing it and is reminded from their example to get her reading done as well. It is a neat blessing to see the power of Charles' example and the inspiration he provides to his siblings. I am grateful for The Book of Mormon and the increased spirit of peace it brings to our home as we take time to read it on our own and as a family.

 

 

Letter to Ruby : May 28, 2015

May 28, 2015

Dear Baby Ruby,

     Guess what? We can’t wait for you to get here! Charles has been dreaming of holding you since Thanksgiving morning when we told him you were coming. He talks about it all the time. How he is going to sit and just hold you all day long. Every morning when I would walk him and Orson to the Kindergarten playground to play until the bell rang he would stand by me for a while each morning and proudly point out my pregnant belly to anyone who would turn our way and say, “My mom is having a baby you know.” And his eyes would shine and you could see him dreaming of you and he already loved you and he hadn’t even seen you.

      Maelee has been praying about you since she was 2 years old. She started to talk about you, not that she wished you would come, but that she knew you were coming. It was always matter of fact when she referenced her sister, you. When she first started praying about you it was before we had told her we were pregnant with Charles. When we told her we were pregnant then, and then found out it was a boy she didn’t seem worried. She was older when the same thing happened with her second baby brother, finding out it was a brother and not a sister I mean. She was more upset then. Impatient I think for you to get here. Then after Dad and I went to the ultrasound when we found out Maelee’s sister was finally coming we went right away to see her at her school. She was eating lunch and she knew we were there to tell her if she was having a brother or a sister. She jumped up from the cafeteria table and ran to meet us halfway for the news. Happy isn’t a strong enough word to describe the look on her face when we told her she was having her sister come. Now, especially since my stomach is so big since you are almost here she is always stopping throughout the day to give you a hug. She tells me, “I can’t wait to have my baby sister Mom.”

      Orson, your big brother, is the youngest right now. He seems a little worried about sharing me with you. You two will have the most time together before he starts school. We will have our routine together when school starts again, the three of us - while Dad is at work and the older two are at school. If you feel squished sometimes, its him gabbing his elbow into my belly trying desperately to make himself comfortable on what’s left of my lap. He does talk about you and what he will help you to learn while we are driving in the car. Morning time in the car is his deepest thinking time to think before he speaks. He has mentioned you often during these last few weeks. So at least he has a little sense of you coming into the family.

We all love you very much and will see you soon!

Love,

Mom