Playing the Bull Roarer

 

I stared this blog in March to help support the army of kind people behind the April 2015 miracle event for our family. I wasn't sure what to write then, but ideas came. I didn't know if I wanted to keep writing or if I wanted to be done. But here I am 5 months past the event and I still post. Ideas still come. Sometimes they are lame ideas to write about, but nevertheless I continue to write. The posts aren't always about CF, but since I am the creator of the blog I suppose that it is my freedom to write about old TV shows, disastrous family vacations, or anything else I choose.

 

This post is a CF related post. Here is a little update on Orson's button. He does not stop amazing us at his acceptance of this part of his life. What was foreign and we thought we would never get use to, we are use to. There still are some moments of indecision, like "how much detail to be go into this with people." Not like random people, but like a babysitter, or the mom's of friends who house he may be at. We don't want to say so much about it that they totally freak out and are nervous about it (and we look like weirdo's), but they need to be aware of what to do in case of a button emergency (which hasn't happened but, but we have been assured that inevitably eventually it will).

 

I get a kick out of doing this sort of thing so I made a 14 step JPEG in paint to show what we do at night to successfully complete one can of 375 calories. Its a little different when we do the bolus feed during the day, but close to the routine I outline in the JPEG I created.

 

My favorite part, that I think I have gotten pretty good at is the last step in which I attempt to get as much water out of his extension set tube as possible. I swing it around in a circle really fast and it makes a cool sound. I always think of the movie "Crocodile Dundee," when they show a man playing the "bull roarer." Frank laughs because I clearly get a kick out of making the noise with the tubing, slightly immature I suppose but its a pretty cool sound.

 

The part that I especially wanted to include in this button update is a spectacular tender mercy that has happened each night since April 29, 2015 when we started using the button. Ready for this?The alarm on the pump doesn't wake any of the kids up! Each time the bag is empty or if there is a kink in the line a loud high pitched alarm goes off to alert the user. NEVER has this alarm woken up any of the kids! We have all three kids in the same bedroom right now - all very close to the source of this loud sound. Charles on the top bunk, Orson on the bottom bunk, and Maelee is literally in her bed inches away from the pump and the alarm. It doesn't even bother baby Ruby! It is such a special feeling to know that Heavenly Father cares about our kids not being bothered by this alarm, and that they are all able to sleep right through it. Also how cool is that Orson at 3 years old has been given the ability to swallow 2 horse pills in the middle of the night every night? He does it then crashes right back into his pillow and is asleep again in seconds. Totally amazes me every night. Great blessings. Thankful parents!  

 

An Irrational Sense of Project Optimism

      Growing up, my Dad traveled a lot for his job and was often gone during the week and home on the weekends, or sometimes gone for a couple of weeks. It never occurred to me then that my Mom was taking care of six kids without help because she never talked about it being a “burden” or made a fuss about it. Even when she needed to take sleepy kids in the van for a late airport pick up she didn’t complain. We had great music that we would listen to and it would be a party all the way to the airport. Dad would be standing there waiting on the curb at Phoenix Sky Harbor Airport and we would roll up in the van with all the windows down and the favorite song of the season, often “500 Miles” by the Proclaimers, would be blaring and he would laugh at us, throw his luggage in the back and then we would all listen to him talk to Mom about his flight, meetings, hotel, etc on the way home. Always mixed in his stories of his trips he would talk about this or that persons reaction to the fact that he had six kids. He loved telling people that.

      This pattern worked well for my Mom and Dad. They even seemed to thrive on it I think. Mom’s most creative and ambitious energy was unleashed while Dad was traveling. She would paint rooms, tile the kitchen, move furniture around, re-do the backyard, lots of good stuff. I distinctly remember that although she preferred neutral shades (unlike me whose house looks close to an underground graffiti tunnel as far as COLOR goes) it was always important to know the name of the paint color you chose (she liked marshmallow and carnation petal). So besides my paint colors being different (bulls eye red, blue jay crest blue) it comes as no surprise when my husband goes out of town that my mind starts spinning of possible projects to accomplish.

       So this past weekend when Frank went out of town I had a massive mental list of projects. I had chairs to finish painting, a curio cabinet to finish painting, Orson’s top secret birthday present to work on, a book I am reading to finish, a baby blanket to tie, a queen size blanket to tie, closets I wanted to dump and organize, and my most newly acquired project making blouses for myself. It comes as little surprise that most of the things on this list did not get done. I took some bites out of a few, but no where near what I thought I would be able to get done. By the 3^rd night of my insanity of staying up way too late and following a Saturday of being “cranky mom” here came Sunday. What a relief!

       Sunday was such a great day. There has been a substantial emphasis on keeping the Sabbath day holy, and “making Sunday different” lately in many of our church meetings. I am not able to get there every Sunday, get my heart there I mean and the attitude I should have in regards to “church day” as Orson calls it. But today totally worked out. The kids played nicely together. I didn’t stress about getting anything extra done. I focused on food, our “treatments” (aka medical routines), and getting them ready for church. We had fun, it was chill. Everything at church spoken was just what my heart needed.It was a different day, a welcomed different, and my testimony of what keeping the Sabbath day holy can do for a family (and for a Mom with an irrational sense of project optimism) was strengthened.

Plus Dad came home today, and if we could pick a song to play for him to embody the music we have been really into lately as a family it would have to be “Dance Like Nobody’s Watching,” a snappy tune from the PBS Kids Odd Squad soundtrack. Don’t knock it until you’ve tried it!

Thanks Shirley

 The only time I ever went to a women's conference(*see note below as to why my memory of the first time will prevent me from having the desire to go again)I heard a thing or two that stuck with me. One idea related by a speaker at this event, name forgotten because it was 8 years ago, referenced the simplification of her wardrobe. She said that she went on a church mission and was told exactly what to bring in regards to clothes. She had 2 skirts to choose from and 4 blouses. The speaker went on to explain while at first this seemed like a real bummer, in actuality it made her day start of with a simple choice and she could move on happily.

I took that anecdote and related it to my desire to have a certain "style" if you will of a blouse that I loved and then to have it in every color (not an uncommon dream with women I don't think). I have been in pursuit of this goal ever since. I made one attempt at making my own blouses, many of the same style but different prints, a few years ago. I wore them all quite a bit but the fit started to bother me and I ended up cutting up the shirts to make something else.

This week has been the start of my second attempt. Over the past week I have not only been working on this sewing project but have also happened to have 5 different women in my life stop by for various reasons who I have discussed this new endeavor with. Each one provided insight and got me thinking about how to tweak this or that to make what I see in my head happen with the thread (see what I did there with that rhyme).

So finally after 3 different attempts at success I finished the "tunic with a yoke and hidden pockets shirt" (I am working out the name still). I am happy with the results. So happy that I embroidered an official cursive K on the shoulder. This is a personal throwback to growing up watching Laverne and Shirley and loving her classic cursive L on ALL her tops. Without a doubt I am definitely a Laverne. I have paid tribute to my childhood pop culture Laverne and Shirley knowledge several times over the years with an embroidered K, including on my black stylist apron I wore in the salon I used to work at.  

I just decided it would be appropriate to call this blouse the "Laverne top." Thank you to all the Shirley's in my life who encourage me to continue pursuing peculiar projects, AND who still walk beside me in public places when I wear my homemade shirts.

(*Note* I had my first little baby with me. I was terrified to nurse in public and despite having a separate room for nursing mothers provided I still hated it. I also wasn't a huge fan of giving the baby the applesauce and enzymes in front of strangers who like to stare. Also she had gross diapers the whole day and by the end of the conference I was supposed to enjoy I was frazzled from running back and forth to nurse her and change her outfits that kept getting pooped on. A mental block still exists. Desire to attend another conference remains zero at this point.)

Courage Past Bedtime

We decided last week that we were going to go to the Mesa High School football game. We have players to cheer for and thought it would be a good family adventure. We planned on taking all the kids and doing our best to stay until half time. We geared up mentally all week for it. Bringing any of our babies out past bedtime isn’t something we normally do, but Ruby is so easy going and we already planned on only making it to half time.

The kids were doing great. They were enjoying being there and we were having fun. Frank and I are easily impressed with ourselves when we break the norm and take the kids out at night. After the standard issue incidents had occurred i.e.; Orson dancing around first real cute like then real screaming scene like saying he had to go pee as soon as we climbed our way into the bleachers, then going and waiting in the concessions line and re-climbing our way into the bleachers we had made it through the first six minutes of the first quarter of the football game.

Just as I had turned back around from asking the group of boys sitting behind us not to use the four letter word they kept saying over and over again my eye caught something strange on the leg of Frank’s jeans. It was poop. Kind of a lot of it. Ruby, who he was holding, had silently and happily had a diaper blowout.

Clearly Frank had not noticed that this had happened. The kids were all sitting on the bleacher in front of us and they hadn’t noticed it, thank goodness because they would have freaked out. I really hoped that the boys behind us who I had just finished having a staring competition with and asked them to stop cursing hadn’t noticed it. My plan of action was to remain calm and get Frank’s attention before he stuck his elbow in it. I realized it was vital also to remain calm and confident as I got his attention so that he would not freak out about the medium to large sized mound of Ruby poo on his pants and assure him with my calmness that although I did not have a plan of action for this particular problem I would soon make and carry out one.  

Wet wipes were obtained. The pile of poo on the Dad jeans was removed. I cannot however say the same thing for the residual on Frank’s white t-shirt. Ruby’s bum was then placed in a blanket I had with me in the diaper bag so as to prevent more poo from spreading onto me as I found a place to make her wardrobe change. A quiet and surprisingly secluded corner of grass was found to fix Ruby’s diaper and for me to take some time to decide if I wanted to save the poopy blanket or not.

I returned to the bleachers with a freshened baby to find that we had made it through the popcorn and drink’s from the concession trip, the group of boys behind us were now making hilarious jokes with close sounding replacement words for the four letter words I had asked them not to use, and Frank and I both totally agreed that we had successfully made it through the first quarter and a half of the football game and were ready to go home.

Although we did not make it all the way to half time as planned, it was still high fives all around. Absolutely still considered a very successful family event. Frank was stellar in his reaction to being pooped on. The kids really did behave well and had a nice time. We got home safely and had one more experience for the shelf to give us courage to go out past bedtime again sometime.

Other Titles Considered For This Post : The Brown Mark of Fatherhood, Hey Frank Don’t Freak Out, Blowout Off the Field, The Day Dad Learned Not To Bounce the Baby

     

The Summer of Sunscreen on the Toilet Seat

The summer never goes as beautifully as I plan and dream of that last month of school when I have a rush of excitement of being done with the school day grind. I had big dreams of one planned "fun thing," for every weekday that we discussed as a family at the beginning of the summer during a family home evening. Mondays was baking day, Tuesdays we were supposed to go to the library – etc. Before we could do this fun thing we were going to work on memorizing a scripture, do a chore, and do some school work. I could picture the synchronization of our day. I pictured the kids falling into this amazing summer routine in which they would all work together, get along, and be utterly content in this lovely planning of our time before school would start again.

The reality check I discovered was that I was pretty huge and pretty exhausted in the last month of pregnancy by the last day of school, more so as each day passed. We attempted to start our schedule and had some marginal success the first week, but quickly it spiraled into me and the kids winging it. So instead of the summer being the summer of a lovely synchronization of time well planned it looked more like this:

Me doing whatever it takes to convince the kids that I had no business in a swimsuit and that swimming in 110 degree weather was really over rated. The kids hoping each day for monsoon storm clouds so they could run outside into the playhouse and camp out in there during the rain (they were very disappointed we didn’t get much rain, but made me promise that as soon as it really did rain they could run to the playhouse). Figuring out how to use a 2 ounce syringe to do bolus feeds after Orson ate breakfast and lunch so we could get one of his cans of “medical food” in during the day instead of doing two at night. Maelee getting baptized and shouting, "I DID IT, I REALLY DID IT!," in the changing room at the church when she was done. Forts being built in the kids bedrooms, the idea being to partition of their room into blanket rooms for each person. Charles still has his fort up around his bed – going strong for 4 weeks now. Ruby being born. Frank and I deciding to have a marathon watch of all the Pirates of the Caribbean movies on the nights he had off from work for the baby. While at the same time I had started reading the “Work and the Glory” series for the first time. I had some pretty crazy dreams with the two stories mixed, pirates and pioneers that is. Orson got a hold of the spray on sunscreen one day and coated the entire bathroom with it. It took a while to get the sunscreen off the toilet seat and floor. Some mysterious things started happening. The mystery of “who cut Orson’s sheets with scissors” was nearly unsolvable. Similar to the mystery of “how the pee keeps getting in the corner opposite the toilet instead of in the toilet,” was also a tough one. It was a little ironic that when we walked in the door from Ruby’s hospital stay her sister had just thrown up and the kids had sick stomachs for the next couple of days. Then there were several times when each of our hearts was individually melted as baby Ruby held our finger or when she sang out a little happy song.

So although we absolutely cannot say it was a summer of beach trips or theme parks, we can say unique memories were made AND we got an awesome new sister. I have no doubt that we will make a point of discussing the memories of this particular summer for many years to come.

Suck, Swallow, Breathe, Repeat : Back to Working From the Home Office

 

 

I am so grateful to be home washing bottles in my own sink and not in the bathroom sink at the hospital!

 

Having a 39 day old baby in the hospital was humbling. When you have an army of medical professionals administering medicine, making decisions, monitoring behavior, ordering tests, and checking up on every skin irritation, diaper, and bottle your baby has or touches you start to lose your confidence in your ability to successfully handle your baby on your own.

They did blood work, and a nasal and throat swab. All the common respiratory viruses that they tested for including pertussis (which several doctors said her cough sounded like before the test results) came back negative. The CF specific sputum culture that we were waiting on to see if pseudomonas was growing came back with “no growth indicated” after 3 days of growth time. The official reason Ruby was in the hospital was labeled a “CF exacerbation.” The doctors assumed that the baby would grow pseudomonas because Maelee grew that in her July throat culture and is treating it now. Ruby was protected from it though at this point. With lots of prayers from friends and family her cough was able to be significantly reduced to scant and mainly centered around when she eats.

Before we left there was more talk of potentially the whole problem being started from aspiration. Potentially Ruby’s “suck, swallow, breath” reflex got switched around and she got some fluid in the lungs which manifested as the spasmy cough which induced the vomiting. A swallow study to see if that is the case will be done soon. It is common for babies to have swallowing problems and is not related to the CF, but adding it onto the complications of needing enzymes with all food and her thick mucus it becomes another layer of complication for her to work through each day. It may of also been just a virus so time will tell.

In the mean time we continue to think about the things we learned from the hospital stay, and the blessings we received.

We are extremely thankful that my Mom was able to be with the other 3 kids while I stayed with the baby and while Frank worked. It would have been very difficult to leave Ruby in the hospital alone.  

Despite all my best efforts the 3 days before the hospitalization were awful in regards to Ruby’s feedings. I would try every feeding position I could think of to help her not start to cough and vomit when she ate, but without success. I ended up doing something I never had to do with the other babies. I bought fancy bottles. {I wasn’t able to nurse Ruby for very long. She was struggling from the beginning to nurse and be satisfied. It was different from the other 3 kids before her and very exhausting. I began to pump everything but didn’t last long doing that. So she had been on bottles for a couple of weeks.} I had been using generic bottles, but I was so worried about her I was ready to try anything to see if I could make eating easier.

The day before she was admitted to the hospital I discovered Dr. Brown’s bottles worked really well for her, like significantly better than anything else she had used. What a blessing they were to have them with us in the hospital.

Our pulmonologist said to be at PCH after 2pm on Thursday and our room would be ready and we could bypass the ER. That was a huge blessing.

We had excellent nurses who showed tenderness and expertise as they cared for Ruby. I especially appreciated the kindness of the respiratory therapists that came into Ruby’s room twice a day for her chest percussion therapy and breathing treatments. They all lovingly pounded on her chest and back and sucked the snot out of her, fawning over her the whole time. They all happily answered the questions I peppered at them about pediatric respiratory care, “shop talk.” One night I had turned out all the lights and was trying to get Ruby to sleep before her 10pm IV antibiotic would be given. There was a knock and in the doorway this seemingly massive man stepped in, all gowned up. Everyone who came into our room (they even wanted my Mom to do it when she came to visit) was on dropulet precautions requiring paper gowns, gloves, and masks due to the CF. So this man’s height and size seemed extra precarious due to the mask, gown, and gloves – plus it was 9:30 at night and I was dozing.

It turns out he wasn’t the boogie man, but was with respiratory. I had forgotten that they hadn’t come yet for the evening. Since all the past RT had been women I was curious as to how this burly guy would handle working with a baby. Before he was through Ruby had his finger in her hand and was singing to him. He was cooing right back at her. It was very sweet.     

I have to admit I was extremely insistent on coming home as soon as I possibly could, and made that very clear to all the doctors that came in to see Ruby. A squeaky wheel, very. Her cough had significantly improved and she had gotten 8 doses of IV antibiotics. So with all those favorable test results they sent us home with no antibiotics.

We are very aware of Heavenly Father’s hand in our lives. We are also very grateful for the prayers offered on Ruby and our families behalf. We of course did not expect this hospital stay for Ruby, but being able to be there with her while she needed to be, and knowing that because of the fundraiser in April and support from our community, friends, and family we would not have the worry of the money it would cost was great comfort.   

Holland Was Right, but it's a Tough Habit to Break

There is a conference talk by Elder Holland that goes into detail about how parents should never compare their children. It does neither the parent or the child any good. 

Frank and I still have a hard time believing it when our other CF kids have different physical trials than our first,Maelee, did. It seems clear to us now how very blessed Maelee was in her infant and toddler years with her disease. 

So our pulmonologyst probably gets sick of us referencing our first experience  with "the p word" (pseudomonas). Maelee got a throat swab that cultured  for the P word when  she was 10 months old. She was unsymptomatic. No bugger nose, no cough, fever, etc. We completed some rounds of the 28 day antibiotic, did a bronchoscopy to make sure it was gone and moved on. She has cultured for it a handful of times since then (always when we have a new baby in the house) but we run the antibiotic and move forward - at home.

On July 14th all our CF kids had a clinic visit and got throat swabs done. Maelee came back with the P word, Orson's came back clean, and Ruby came back with achromabactor. At the time of the results of these tests Ruby was unsymptomatic. Maelee started her new standard Tobi Podhaler regemin and we moved on.

Then a small cough for Ruby began to grow into a spasm puke inducing scary cough for Ruby. I took her in 3 times to be listened to by the pediatrician last week which led to a chest x ray which led to the hospital in attempt to irradicate the bacteria.

So after finding out what "deep suction" looks like on a newborn, and having a nasal swab, throat swab, another chest x ray, and blood work done we sit and wait for the last test to come back. We need to know if the P word is the reason Ruby is scary-red faced-puke coughing OR if it is the achromabactor. All other standard respiratory conditions have come back negative so it is being presumed that a gnarly CF bacteria is making a home in Ruby at 36 days old. The treatment for that will be 7 days of IV antibiotics in the hospital.

So in the mean time since the hospital is already busy and its the weekend, we wait. The incredible thing is Ruby has had no fever, remains hungry, and all is well besides a lingering cough. 

So once again the words of a conference talk (The Tongue of Angels) are proven valuable information to log in my brain. "Try not to  compare your children, even if you think you are skillful at it."