Sunday, August 30, 2015

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


Saturday, August 15, 2015

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.

Saturday, August 8, 2015

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.   

Saturday, August 1, 2015

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."