perspective-ness

after i wrote my last post and saw the words of encouragement from my fellow cf mommas.

i felt humbled. 

sentiments like, 

“you’ve got this!” and “you’re awesome!'”

from the same women, who administer numerous treatments a day for each of their multiple children living with cf — 30 min of the vest (which is a device that literally shakes the person with cf and breaks up the thick mucous) at least twice a day and then nebulizers a couple of times a day — both of these are increased more when there is sickness.

all of this in addition to the enzymes and acid reflux meds — yeah, i didn’t mention how repeatedly using enzymes causes acid reflux. 

oh, and did i ever say where these enzymes are derived from?

pig pancreas. 

yep. 

science is amazing. 

…and some would say cruel. 

i wonder how many vegans who have cf are out there?  

 *~focus bekah~*

here, they’re telling me how awesome am, whilst i’m administering a few breathing treatments and enzymes, meanwhile they are in the trenches. 

but then i see my poor sweet baby girl arch her back in pain when her belly hurts. 

her little tummy swell and bulge when she becomes constipated. 

no one wants her precious baby to hurt.

no one wants to worry for her child’s future, knowing there is a dis-ease in her little one’s body…how it could all change.

these are our daily challenges. 

and it sucks. 

this disease really messes with you. 

so, to my cf momma friends, you are amazing. 

a 5¢ tour of living with cf

only 30,000 people in the US have cystic fibrosis.


that’s like 60 cases per state. 

super rare.


this fact stopped my husband in his tracks. 

ya know, the same husband who i have proclaimed is always the positive one. 

yeah, that guy.


we are still dealing with the reality of this disease. 


…and the severity of it. 


it has certainly been coming in layers for us.


what stopped me in my tacks the other day was hearing how progressive of a disease it is. 


                                                                         *


the other night, someone asked me, “so, tell me exactly how i am to pray for you and your family?”

i was confused, what did she mean?


she was referring to the cf and everything that surrounds it.

i fought back some tears of gratitude, as well as sadness… a question that some of the closest people haven’t asked, yet here was this person, reaching out.

then i remembered a fellow “cf mama” advised me that most people just don’t know what to say, so don’t hold it against the ones who don’t ask or say anything, but to confide honestly with the ones that do.


i proceeded to go into my 30-second-in-a-nut-shell description


“well you certainly don’t make it seem as big of deal as it is! gosh!”


                                                                         *


people with CF have more mucus buildup in their membranes — their lungs, their pancreas and other organs.

in their lungs, this extra mucous traps and harbors bacteria, which, when around someone who is sick is very detrimental to someone with cf. 

if you ever wonder why a cf parent or person is being uptight about getting sick, this is why. two people with cf are not to be in the same room without each wearing a mask, as they could pass bacteria to one another and they could become very ill. 

chronic infections in someone with cf damage the lungs and eventually lead to respiratory failure. 


in the pancreas, this extra mucous hinders nutrient absorption and affects the gastrointestinal tract.  every time baby girl eats or drinks, which includes nursing, she needs to take enzymes. 

the dosage and amount of pills she takes will increase as she grows. if her dosage is too high, constipation is common and bowel blockages are a definite concern. 

watching baby girl’s stool has become the new normal around here: 

“it was the perfect little shape and consistency!” 

“hmm a little less formed and oily…”

if enzymes are not administered before she eats, she could get a belly ache. 

right now, the median life span for someone with cf is approximately 40 years old — a vast increase from when it used to be in the early ages to teens. 

in my online cf support groups, there are still young children and adults who have it severely and who are passing from this disease and it hits me. 

every. 

time. 

we are BLESSED to not yet have any lung involvement with baby girl, and BLESSED that her involvement with this disease is considered mild by the medical professionals. 

we hope and pray that this will always be the case. 

if you pray, we would love your prayers for her, too. 

you know when your car gets stuck in the mud and you just can’t get out? 

tires spinning, the horrible, awful, revving sound with just enough pity that everyone knows it’s not going to go anywhere without a push.

that pretty much sums up how i’ve been feeling. turning my wheels so fast, but barely making progress getting out of this rut. 

       .

         .

            .

she got sick again. this time it was a 103.7° fever at 4 am. i sat straight up in bed and just knew something was wrong. once i felt her, it was like fire. 

heat emitting off of her. 

for the first time, i didn’t panic. 

must be getting the hang of things? 

her cheeks were hot red and flushed. 

back to the pulmonologist where he upped her breathing treatments for the winter. 

as a preventative.

we were reassured this was another of the many viruses she will be fighting off.

just when i get hang of administering enzymes, vitamins, salt, we add multiple breathing treatments for the morning and evening. 

gosh, i was never on time before we had kids, the fact that i even make it anywhere these days is a miracle. 

                                                                         *****

as i’ve said before, the truth of her diagnosis was one set of emotions but now coupled with her being sick and all of these added treatments have made it all so very real. 

and scary. 

                                          

                                 ****

i’ve been sleeping less. 

waking every hour.   

which explains my snippines. 

…lack of patience. 

…lack of forming complete sentences when i speak. 

i haven’t seen any of my friends in weeks. 

months. 

not sure when the last time i even met someone for coffee. 

or a drink. 

shopping? ha. 

…unless it’s for groceries. 

i’ve actually become “that friend” who is a memory. 

the one who doesn’t reach out, and if she she does, it’s crisis mode. 

i miss being more than that. 

this frantic, scattered, mess who is 

trying to create a calm for her little boy, care for her baby girl,  a home for her husband, cultivate her small business and to continue to keep her modeling thriving is stuck. 

in the mud. 

my tires are revving. 

they’re trying. 

but they’re so tired. 

so. so. tired.  

sick-ness

the pulmonologist cautioned us about baby girl’s “first illness.”

each visit, he would remind us that she will, indeed, become ill, catch a cold, get a virus…i brushed it off because i already have a child, so i’d like to say i’m not a nervous-nelly-first-time-newbie-momma when it comes to her kids getting sick.

i don’t freak out and call the doc the second there’s a cough, sniffle or even a low-ish fever.

but when i hear a sudden barking sound coming from my 6 month old, who was recently diagnosed with cf, i did exactly what dr M was cautioning against; 

i panicked. 

the barking cough came on so suddenly. like one second she was fine and then the next she coughed and then the next, she was barking. 

not even a little bit of exaggeration here.

so as i picked up the phone — who the heck do i call first?? 

pediatrcian or pulmonologist? 

i called both. 

without boring us all with the details, she had croup and was prescribed liquid prednisolone. 

no biggie. pretty much what any other baby gets prescribed. 

we move along with our weekend and she gets better. 

until monday morning. 

suddenly, again, instead of the barking, it’s a rattle-ly, bronchial cough. 

so i did what any normal mother would do.  

i panicked again. 

(don’t judge, cause you would, too.)

i call both docs and leave messages. 

at this point, she’s wheezing and her breathing is labored. 

while we wait, little C and i sing to baby girl and she’s able to calm down and fall asleep, for a bit. 

right after this picture was taken, time sped up and actually became a comedy of errors, though i’m not laughing yet…i was trying to get little C to school. yet, i needed to put both car seats back in the car and naturally baby girl wouldn’t let me put her down, ’cause she was so sick. 

both doctors call me, one right after the other, as I’m pacing the floor watching baby girl’s belly;

up and down. 

up and down. 

much faster than a peaceful breath.

her belly would go hollow with her inhales. 

not good.  

in the bathroom, little C sits on the tub, as he normally does, for me to comb his hair, and somehow manages to sit on the shower curtain, in turn, making the whole rod and curtain fall and encase him. 

he tumbles backwards into the tub. 

he cries. 

i cry. 

baby girl cries. 

i sit on the toilet holding her and holding him, while we all cry. 

(thank God he was totally fine)

meanwhile C needs to be at pre-school.  

15 min ago. 

a friend comes by and takes him. 

(thank you, D!) 

i finally get baby girl settled and we head on over to the pediatrician. 

from there, it’s the normal stuff.

baby girl is check out, and the plan for action is discussed. 

“we are treating this aggressively so she won’t end up hospitalized.” 

this was the moment that my panic was justified. 

i wasn’t being a crazy, frazzled mom. 

moments later, she’s on the nebulizer with albuteral and a steroid.

3 x day. 

plus her liquid steroid twice a day. 

and of course the usual two enzymes with every feeding, which is like 8 times a day…

...we are doing much better now. 

she’s a little pro with her breathing treatments, too.  

i’m hoping we can make it through this winter unscathed. 

praying. always praying. 

better-ness

we had a 3rd sweat test for baby girl. 

it actually went better than expected, and we brought along little C, too. 

we figured it would be best for him to see what’s it’s like, since now the dr’s feel he should have one, as well. and we talked it up for him to help soothe baby girl while the “scratchy things” were on her arms.

so while sulfuric acid and electrical stimulation devices are placed on baby girl’s arms, he sang the full version of “let it go” and included the musical interludes, by humming, of course, and he reenacted the same movements elsa does as she builds her ice castle and lets her hair down. 

oh, and he also changed around the pronouns to fit his male gender. 

the nurse was agog and we were all truly entertained, little sister included. there were no tears from any of us, baby girl and me, and he even finished with a full on bow. 🙂

a definite success!

it was a nice contrast to how every other doctor appointment and test has been…gosh, even little C’s 4 year old check up visit was mainly spent with me answering the pediatrician’s questions about CF; mostly the impact it has had on us as a family — financially, emotionally etc. the words coming out of my mouth were text book:

“we are doing okay. getting by. it’s rough, but we are surviving.”

[ insert big grin here] 

because, that’s me! i smile! 

even when i don’t feel like it. 

it shows i have it together! 


😀


…poor kid gets three shots and his mom is blabbing about some boring disease. 

*minor props to myself; right before his shots, i paused and said, “i’ll talk about this afterwards.” and then i focused on him. 


but the pediatrician’s questions really got me thinking…

i mean, yeah. 

originally, while i was pregnant, we were all just trying to prepare the navigation of a three person household to a FOUR person. 

from the excitement challenges of an energetic 3 1/2 year old BOY to then introducing him to being a big brother. 

no more only child with solo attention. 


ha, there were moments, when i first brought baby girl home, that i was absolutely sure, absolutely positive, little c was a sociopath.

no doubt! 

turns out, that was totally normal;

for he to act like one, and for a new momma to believe it. 


even if no one else talks about it, ’cause they don’t…trust me, it’s normal. 


*and side vent: when you have a second baby, it’s totally harder than the first, because you have SO MUCH MORE help with your first babe. 

second kid? people are pretty sure you have the hang of it and there’s just not as much hands on for help. yet, you have TWO kids, instead of one. 

we were totally blessed to still have amazing family and friends help us, albeit our group was just smaller.  


so while we had all of those “normal” things to deal with, we have also had these doctor appointments, sweat tests, phone calls, stool scrapings, enzymes, poop consistency, constipation- side effect of enzymes, the science of this life threatening genetic disease and plain ol’ worries.  

it’s been a lot. 


and when a spouse works 60+ hrs a week, things can get, overwhelming, even for the most seasoned of mommas.  


i promise, i’m not complaining, and there is always someone out there who has it worse than i, and i’m grateful for my little blessed life, but this has not been easy. 

not one bit. 

but i do have a most amazing husband; 

he keeps us smiling, even through our tears

…because we have to! 


it’s not as bad as it could be…

it could always be worse. 


and i need to create a relatively even keel for little C. 

i’ve tried my best to be mindful of him throughout this process. 

i’m sure i failed, and he’ll talk about me to his therapist when he’s 25, 😉 but i can always say to him, “i’ve done my best, and i’ll always try harder to be even better” because he deserves that. 

we all do. 

the field trip

my 4 year old son had a field trip to a farm the other day. it was the quintessential setting for pumpkin picking. 


this was the real deal. 


we parked on the dirt and immediately we were greeted with the fresh smell of autumn air and juuust the slightest bit of “farm” smell.


i mean that in the best of ways.


at first, i was quite overwhelmed with what seemed like a million little people running all around with their high-pitched, squeaky voices, filled with enthusiasm of the budding adventure that was waiting for us. 

my child, was amongst these excited children, and i almost pulled his arm and dragged him back to the car, because it was all too much for me. 

but i took a deep breath and a big swig of my coffee as i steadied myself up on the wooden steps into the hay wagon that was about to be pulled by the big, red tractor. 


once seated, i was actually able to relax into the ride and enjoy the upbeat chatter of the children and parents, alike. 

the air had that nice crispness — not too cool and not too hot. 


perfect. 


there were bright yellow, red and purple mums decorating the outside of the barns. orange leaf wreaths hung on the sides of the buildings.

once the tractor stopped, we were able to walk through a pumpkin patch and choose the one that would be the newest addition to our family. 



when we found our favorite balls of orange, i was a little confused with how to actually remove said pumpkin from the vine?! 


“city girl meets country” was in full effect.


lots of pictures were taken and it was generally just your good, all-american time at a farm with your kids in the middle of october. 


americana at its best.


after the tractor took us through the corn fields and back towards the main barn, the kids could play…and i mean PLAY! 

there was a hay wall, a tractor turned into slide, a corn tunnel, and a cow milking simulator! there was a kiddie corn maze and a cornbox…seriously, whoever designed this was genius. 


as my son was running around playing, i ran into a woman i had known briefly in the past; her son was there, as well. our chatter started off with the typical mommy “chattiness” and turned into me exclaiming how well my son has been to adjusting with having a new little sister. 


i even felt comfortable enough with this woman to confide that we have had extra challenges in dealings with baby M’s cf diagnosis.


*now every time i speak to people about cf, i am usually greeted with quizzical looks and questions of “what is cystic fibrosis?” (i wouldn’t know as much as i do, if my daughter had not been diagnosed…)

i was expecting her reaction to be as such, but instead, she took a second breath; 

a knowing breath.


aaah, she knows about cf. her sister had it. 

 

had it. 



before my brain could think of what to say besides, “and how is she doing?”

my mouth speaks those exact words. 


and the next thing you know, this wonderful farm fall day was filled with tears. 


hers for her sister.


and mine for my baby girl and the challenging future.



and each of us apologizing for our warranted emotions, wiping our fears and sadness away…

first feelings

it’s funny. when we were told “atypical cystic fibrosis” (meaning she does, in fact, have cystic fibrosis but there are no symptoms present at this time) in our brains, we were operating on that she doesn’t quite have it.

i mean, in hindsight, how does one not quite have a disease?? 

maybe this was our way of getting through this rough reality.

ok. so our baby girl has atypical cystic fibrosis. no symptoms, though, so this is good. 

and once we came home, armed with our samples of enzymes and bag of apples for sauce, we went right into it, because that is just what ya do.

maybe i was ignoring the sadness?  the confusion?  the anger?

i mean, i was sad. i AM sad. don’t get me wrong, but i think i was ignoring that hot rush of sadness that ripples around your chest, down towards your stomach and engulfs your heart. 

yeah, i was ignoring that.

i still might be. 

i cry as i type this. ‘cause, it’s not about me. 

it’s about this precious wonder. 

it’s about her biggest hurdle right now should be crawling.

and it’s about these top and now bottom teeth coming through. 

those should be her biggest obstacles. 

…not screaming for a boob and waiting while momma fumbles with enzymes and spoons and dropping capsules and getting it everywhere but her screaming mouth. 


but these are seconds that won’t last forever. she will learn to swallow them whole. 

this is just a brief phase. 

we both will get better…

i, with my timing, and she, with knowing the sound of the capsules hitting the little bowl, the smell of the fruit, the feeling of the cool spoon and the taste of the sweet applesauce. 

her little life will be challenged more so than the rest of us. 

she has no idea. 

more doctor appointments. more care. more tests. more poking and prodding. more enzymes. more supplements…

as we checked out of the pulmonologist’s office this day, i saw it. right there on our paperwork, clear as can be;

reason for visit: cystic fibrosis

while this all makes me sad, i also know she will be a fighter. 


i see it already. 

feisty, little sweetheart, is what she is. 

enzymes and such…

the very next day, we schlepp ourselves into the pulmonologists office where we are always ushered into the exam room right away. 

this particular day was no different. 


except this time around, C and i are fairly more subdued and worrisome. 


in every room, there are fun little things to occupy the children, or parents. 

on the wall is some sort of heat activated board, it’s pretty cool, you can draw with your finger or press your hand and it turns red, blue, yellow etc. and it stays that way for a little bit. 

it can be quite mesmerizing. 

each time we are there, my husband likes to press random body parts onto this heat plaque…hands, knees, elbows, half his face etc…


hey, its the little things.


but this day, we just sat there. 

in silence.

holding hands.


an eternity 5 minutes go by and we are greeted by our favorite nurse, J, Dr. M and this is also where we meet the dietician. 

baby girl gets weighed and she’s gained weight since the last visit! 

yay! 

…or so I thought.  

once the dietician  starts calculating baby’s weight, she figures out how much is gained per day. the math shows baby girl actually went from gaining 25 grams per day to 16 grams a day. 

took me a minute to realize, that’s a decline. 

so all of these rolls and folds and chunkiness — are not true depictions of how she’s growing. 


my milk isn’t enough for her with this disease.

her pancreas is not breaking down the food as it should, so her body isn’t absorbing the nutrients, making her nutrient deficient. 


my milk is not enough.


immediately we are shown capsules of enzymes. we have a choice of two different brands.

one brand has fewer, but larger, beads, or enzymes.

the other has many, yet much smaller, beads.

 

we must break open the capsule and pour out these tiny little beads

ha! why did i think this would be fairly easy and that the enzymes would be in a liquid form for an infant? 

 

there are a few options for administering then to her:

1. pump breast milk, pour them into a bottle with the milk and serve.

yeah. probably not. 

2. put them directly on the boob for baby to help herself.  

um, no. that wasn’t working ’cause, physics, man. 

3. mix them with a little bit of applesauce and spoon feed them to her. 


okay. now that’s doable. so i need to make a HUGE batch of applesauce but this is easy enough! 


no biggie. 


the dietician then informs us that we must make sure that not even one (tiny) enzyme stays on her skin or in her mouth for too long or it will “create a painful sore or lesion” (awesome) and a “finger sweep of her gums is necessary.” 



“how many times a day does she need these,” i ask. “once? twice?”


“before every meal. snacks, too. 

anything and every time she eats, you will need to administer enzymes to her,” the dietician informs me. 


“what about night feedings?” 


“enzymes before those, too. every meal.”

obviously i wasn’t fully understanding. 

“oh, okay. how long will we need to do this? a month, 6 months? a year?”

“for the rest of her life.”



two weeks went by.


we were now in the middle of august. 

my only task, for her health, was to obtain a stool sample. 

i promise i won’t go into details regarding her poopers, but they have never been your “typical” infant stools. 

they’ve been super greasy, oily and plentiful. 


wait. 

was that too much detail?


for real though, these things were like 10 times a day, plentiful. so, taking this sample was super difficult to scrape and secure into the sterile vile because they literally soaked right into the diaper within minutes. 

finally, i was able to secure one and drop it off at the not so very friendly lab. little miss-19-year-old was ever so pleasantly informing me i didn’t have enough sample for them to test. 

oh but I do, miss. momma has done this before.

but I digress… 

off to the pool we went without thinking twice about this stool sample. 


it’s routine… right? 

two mornings later, i see the dreaded number show up in my caller id. 

ya know that sound as you’re watching a character on tv? it’s like a “whoosh” and then they get the bad news? 

or maybe it was just the sound of me being punched in the stomach…



i hear dr M’s voice on the other side of the phone: 

“….yes. we got the fecal elastase results back. …baby m is lacking the necessary enzymes for nutrient absorption. she’s pancreatic insufficient…will need enzyme therapy. i will call your husband and explain to him, as well. and we’ll schedule you to come in tomorrow.”

the science of it all

now, i’ll certainly say,


i’ve been more of the, some would call it, “pessimist,” throughout this whole roller coaster of emotions, yet i like to call myself a, “realist.”  


C, my mom and the rest of the family have all been optimistic. prayers have been said, sentiments of not to worry were told to us and so on…


while i was happy to hear she wasn’t showing any signs of this illness, i just couldn’t shake this feeling from somewhere deep inside.  

i would try to explain where i was coming from and i would be met with, “stop worrying, she’s perfect,” “you have to remain positive.” now, these are all things i would say to someone else.  i needed to hear these things, because i wasn’t staying positive…


but, it’s science1


she has two gene mutations.


two.


if she had one gene, she would just be a carrier.


she has TWO


one from C.


one from me.


C and i are carriers. 


maybe we should’ve gone through genetic screening back when we first met?

ha!  

back when we hadn’t even started dating yet. i continuously said he was “annoying” and gave him the nickname “punk.” (he totally was one! 😉 


but, nope. that wouldn’t have worked. ❤

aaah! young love back in 2005



i wouldn’t have it any other way.