A Long Overdue Update: A birthday celebration, toddler life, home IV antibiotics, and a hospital admission

Phew, it’s been awhile. Hi there!

I thought I would quickly write an update for Fenn and I while our one-year-old little boy took a nap this afternoon. There were some big moments/changes/challenges this summer both for Fenn and I, but I guess that comes with the territory of toddlerhood and motherhood with CF.

6D6BD6A3-08BB-45CA-8D51-638C2654E19D

Fenn
Age: 13 months
Weight: 22 pounds
Heights: 31 inches
Words: mama, dada, kitty, ball, hi, bye-bye, night-night, hot, shoe, ba-ba

Fenn turned one-year-old in late August! I can’t believe he is a toddler now! Let me tell you, that little guy had so much fun at his “Growing Up, Up, Up” hot air balloon first birthday party. He tasted cake for the first time and knew exactly what to do with it. He also loved helping us open all his presents and being the center of attention. Even though he’s just a wee little one, he totally understood the party was for him and that he was special and so important to everyone. We loved having our friends and family celebrate our sweet boy and all the joy he has added to this past year.

Fenn has been walking for a couple months now and is quite good at getting around. He loves to do laps in our house and climb up and down the stairs (it gives me a heartache every time, but we do it). He is CONSTANTLY on the move and I am exhausted 99% of the time. We have been working on adding more words to his vocabulary with the addition of baby sign language. I am surprised daily how quickly he picks up on language. We have a talker! It’s fascinating to watch him understand direction and learn to communicate with the world around him, and with us. I love hearing him say, “Mama” and then watching intently for him to motion to what he needs. I know I say this during every new phase, but I am really enjoying this age watching him learn and grow so quickly.

At the moment, Fenn really enjoys reading and looking through books, whether that’s solo or with anyone who is willing to sit read with him. He enjoys listening to songs, will do a little dance, and loves any toys that he can bang together to make noise (hmmmm, our kitchen pots and pans). His other favorite toys include stacking cups, cars, and balls. He loves to climb on everything and can get a little naughty when he wants to. He loves all different kinds of fruit, chicken, various veggies, and puffs at the moment. We are also still breastfeeding three times a day. He is always, always hungry.

Fenn is very social. I’m talking wants-to-be-friends-with-EVERYONE social. He loves going to story time and interacting with the other kids and adults. He loves being around people. He loves giving hugs and playing with strangers. He is definitely a high energy extrovert, meaning I spent 99% of the summer chasing him around. Lord, give me strength, please!

Last week, we had a very scary choking incident with Fenn. He was snacking on watermelon (which he has had 100 times before) and put too many pieces in his mouth without me noticing. He began to choke, and I quickly realized I needed to sweep his mouth to remove the pieces and then use the baby Heimlich maneuver. He coughed the rest out, but was very unsettled, drooling, and acting as if he was in pain. When Peter got home about 30 minutes later, we took Fenn into the ER because my mama intuition told me something wasn’t right.

In the ER, It took a long time to calm him down, and it was the most anxious and helpless I have ever felt as a mother thus far. He had an xray and Tylenol, and then finally settled from pure exhaustion. Because of the serious nature of choking and possible aspiration, the ER staff thought it was best to be transferred him in the ambulance to the main Rainbow’s ER for more tests and evaluation. Right before we got in the ambulance, Fenn puked on me and seemed to be better and in no pain. I think whatever was stuck in his esophagus had dislodged. We were transferred downtown, and our recovered Fenny-Boy had a blast in the ambulance–smiling, gabbing, ripping off his pulse ox, and showing off for the paramedics :|. I was just happy he was acting himself again after the scary non-stop crying and obvious discomfort. I was just happy my baby was back. Once we were there, the Rainbow’s staff checked him over seeing he was obviously improved and said we could go home after nursing him.

Thankfully, Fenn is ok and recovered quickly from the very traumatic experience. I am just thankful I knew baby Heimlich and CPR because I NEVER thought I would ever need to use such training. Everyone is healthy and happy now, but the Lord protected us throughout that night by keeping Peter and I calm and attentive and encouraging Fenn to be a good patient.

0a7b20c3-c610-4e48-b67e-7ed08da61526.jpegJaneil
Age: 28
Weight: 106
Lung function: 59%
Words: not as many as Fenn

Personally, it’s been a very challenging summer for me in terms of lung function and health. I started the summer off with two weeks of home IV antibiotics due to feeling tired and short of breath, and eight weeks later I was back on IVs again. IVs were not what I wanted to spend my summer doing but it happened and we made it through feeling better and stronger.

Prior to the most recent round, I felt “ok” but my lung function took a big hit. At my appointment, I blew a 48% and then eventually working my way up to a 53%. I knew I couldn’t sit with those numbers below my baseline and risk a permanent decline, and so I discouragingly made the decision so start three different home IVs again only eight weeks after the first round. I was discouraged. I was sad. I cried on the way home and had to mentally prepare myself for all the work and flexibility IVs demand from our family. I was doing everything right and yet somehow, I still ended up back in that “place”. That’s one of the most exhausting and disheartening parts of living with cystic fibrosis, and it can feel very emotionally painful sometimes. All my efforts to keep myself healthy weren’t enough, I needed to spend this summer with some extra help, and that’s the reality of CF.

FA905D71-F5B2-4760-9B54-AEB2B3017836

David Blakeslee Photography

I slowly started to notice minimal improvement on IVs, but didn’t feel I was improving, both symptomatically and clinically, as fast as I usually do. That’s when around 5 weeks in to my second course of IVs I started to feel as if I caught the stomach flu due to horrible stomach cramping and no appetite. I waited a couple days, hoping it would pass, but when the pain got more intense and I was obviously dehydrated (we were concerned for my kidneys because of the IV antibiotics), so my mom joined me on a trip to the ER. A CT scan confirmed what I feared; I had a complete bowel obstruction in my small bowel just below my stomach. DUH DUH DUH.

In the ER, they place an NG tube (a tube that goes through your nose down into your stomach) and suctioned the contents of my stomach to give me some relief. I received a bunch of IV fluids, nausea meds, and I felt much, much better. Then, I was transferred via ambulance to the main campus of UH and immediately admitted.

Over the next couple days, I was on bowel rest, nothing by mouth (not even ice chips, uhhhhh), and intermittent suction through my NG in hopes the release of pressure would relax my digestive tract. After I was suctioned dry, we then tried various solutions through my NG tube to try and dislodge the blockage. No luck there. We weren’t sure what was causing the blockage: old mucus, scarring from my appendectomy, or poop (of course). Bowel obstructions are very common in CF, but my blockage was in an uncommon location and so both the surgical and CF teams were a bit stumped at first.

Truthfully, I do not wish a bowel obstruction on anyone. Being filled with liquid when your body can’t digest and remove it, is simply horrible. At one point, my stomach was contracting so badly, trying in effort to move the blockage and solutions and my NG tube had clogged, the surgical resident had to replace it with the largest tube they could fit. Talk about an intense nose hose! My eyes watered like crazy! Thankfully, the first placement was successful, my stomach was suctioned once again, and I enjoyed a couple rounds of morphine after because the consistent stomach cramping was unbearable. I would equate the stomach cramping equal to my drug-free labor. I am as serious as a bowel obstruction, here. I am not someone who takes narcotics lightly, since I have a very high pain threshold, so you can imagine what this experience was like.

After a couple days of no good news, I was scheduled for surgery the following day (something we were desperately trying to avoid). Abdominal surgery is tough to recover from when you cough and have to do airway clearance. Also, one bowel obstruction surgery greatly increases your risk of another bowel obstruction. We were out of time and options. Until that afternoon, my CF doctor burst into my room and said, “If we go to radiology now, I bribed a guy with champagne to do a procedure on you.”

“Cool, lets go,” I said. I blindly got in her wheelchair and off we went.

I’ll leave it up to your imagination of what they did to me. But, I can tell you it included the head of radiology, a very large tube connected to a gallon of liquid, an x-ray machine, and an inversion table….

BUT, IT WORKED!

Thank goodness it worked! And thank goodness, I have a doctor who is willing to hand deliver me to radiology and be the absolute best advocate she can be for her patients. She promised me I would get home to my baby, and she delivered. I feel very blessed I am under her care. I left a couple days later, with all my bowels in tact and a strict order to never eat Pirate’s Booty White Cheddar Popcorn again. That’s right, Pirate’s Booty betrayed me. We saw the evidence with our own eyes. (No this is no sponsored. Please drink adequate water and consume at your own risk.)

Even though it was a difficult hospital stay, the worst part was that my admission was so abrupt and unexpected; we didn’t have a plan for Fenn. Thankfully, our families rallied together and he was cared for and even came to visit twice while I was in the hospital for a week. I missed him so much and felt very anxious about being away from him. I continued another two weeks of IVs once I was home and started to work on gaining the 8 lb. I lost back. After seven weeks of IVs, my lung function went back up to a 59% and we let my body rest. Overall, the summer was fun, joyful, and busy, and we came out both surviving an ambulance ride and and some challenging moments.

Thank you everyone who watched Fenn and cared for our family this long, difficult summer. Here’s to a healthier fall!

9B6B83DE-A002-4A4C-B2D8-9AF15DFD07F2

Advertisements

Six Month Update

I swear time is speeding up. I can’t seem to wrap my mind around the fact that Fenn has been a part of our family for six months now! It seems impossible (and bittersweet) that we are half way through our first year together. It’s been such a surreal time for Peter and I and our families to watch him grow and change. I think so far we are doing a pretty dang good job at being his parents. I wake up every morning feeling encouraged that I was made to be a mom. I feel as if I found my calling and it fits, Fenn and I, so I can’t ask for much more. Here’s an update on our little baby boy and myself– the good, the bad, and the adorable.
73908A86-69CC-486D-A5DA-20D4AC5DDF7A
Fenn Gilbert Whitworth
Age: 6 months
Height: 27.5 inches (80th percentile)
Weight: 16 lb 15.6 oz (32nd percentile)

Fenn is a special baby. Of course we all know how special he is given our circumstances; but truly he is an excellent sleeper, a laid back, cuddly and smiley baby. (I say this with a bias only a mother can have). Don’t get me wrong, he has a shriek that can shatter glass, pulls your neck skin at a strength that provokes tears, and has a short fuse when he is hungry, tired, or wants to be held. But he is stinking adorable, so in my eyes he’s beyond perfect.

As a newborn, we swear Fenny didn’t do anything but sleep for the first 2 months. In fact, I had to undress him and rub him down in order for him to nurse because he was so sleepy. He also was diagnosed with a tongue-tie before we left the hospital which made it hard to latch the first couple months of breastfeeding (more so, it was very, very painful for me to nurse). We persevered and now, I can proudly say he has been exclusively breastfed for six months and counting! I AM REALLY PROUD OF HIM AND MYSELF! 🙂 He still nurses every 2 hours during the day, which is a lot for a 6-month-old boy, but I don’t mind as long as he sleeps through the night. He just really enjoys the milks (like a lot). Because I am always on some sort of antibiotic, Fenn takes a daily probiotic to help keep his gut healthy and he tolerates my milk well. We haven’t started solids yet but plan to try a more baby led weaning approach in the near future when he and I are both ready. That will be an adventure!

From the beginning, Fenn has been a good sleeper. He was the typical newborn that woke up 3-4 times a night to eat but then would go back to bed. At about 2 months, he started sleeping through the night. We also transitioned him to his crib in his own room around that time because he was beginning to stir in his sleep when I would cough at night. He moved to his room much sooner than I planned, but I am happy the transition was smooth. Currently, he takes two 2-hour naps and a 30-minute catnap during the day and sleeps from 7pm- 6:30am at night. Our nap and bedtime routine usually goes like this: nurse, change his diaper and sing a little song, turn on the sound machine, put him in his sleep sack with his paci, and then he falls asleep on his own. Sometimes he will fuss or babble for a couple minutes, but usually he drifts off peacefully. It’s some sort of witchcraft. He is the best self-soother and that has made my job a whole lot easier. Fenn is like Peter in the fact that they both fall asleep in about three seconds while you are in the middle of telling them what you had for lunch.

29FCCDB7-36E3-4CCB-9AF7-36A001A86C398140ADD2-1890-4F6D-8EF8-9465ED3C890A

Fenn has hit all his milestones ahead or on time. Although, he is a pretty laidback baby in the sense that he doesn’t care to roll over that much even though he knows how. He much prefers to sit up on his own and or be on his belly to play. He loves to bounce in the jumperoo, mimic sounds, smile, and chew on anything within reach. He recently got his first tooth after two months of teething. I thought it would never come! He is always sucking on his hands, toys, thumbs, or paci. His favorite pastime is to pull off both socks and suck on his big toe. He is a serious sucker. Fenn loves to be out and about surrounded by people. I can tell he will probably be an extrovert like his mama. He will flash anyone a smile and really enjoys flirting with all the grandmas at Aldi. Fenn also loves his daddy! I swear dads get all the glory. When Peter comes home from work, Fenn smiles so big you can barely see his eyes under those squishy cheeks. He is a lovable dude, that Fenny boy. We love him so much!

493631AD-9C92-429A-90AC-31EBB6DD7950

Janeil Emma Jaggers Whitworth
Age: 27 years
Weight: 105 lb
Lung Function: 55%

Motherhood is not for the weak. Add cystic fibrosis into the mix and some days, *phew*, it’s exhausting. I will be honest in saying although I have stayed compliant to my treatments and medications; my body is feeling the effects of caring for our baby boy. Physically it can be difficult to be his primary caregiver, but it has been the most joyful and fulfilling gift. I was made to be his mommy; I just know it.

After delivery, my body healed really quickly. Even with the many, many stiches, painful nursing, and interrupted sleep, I felt really healthy despite the normal postpartum woes. The first few months we did fairly well adjusting to our new routine and sleep adventures. It is common with CF to see a decline within the first year post-baby, so I wasn’t surprised in December that we decided to treat my drop in lung function with three IV antibiotics. I went from a high of 71% lung function while pregnant (pregnancy was so very kind to me) to a 55% around the holidays. Of course a couple weeks into treatment, I developed some crazy delayed allergic reaction to Bactrim leaving me with rashes, shakes, high fevers and a 2am call to my doctor. We stopped antibiotics and let my body recover until the New Year. In February at my appointment, my weight was down a little more and my lung showed no improvement, but I felt great. As long as I feel ok, we are treating the decline as a temporary state of health. My job is to focus on eating, doing my treatments, and resting when I can, and of course loving my baby boy.

Weight plays a big role in overall well-being with cystic fibrosis. I lost the majority of my baby weight (26 lb) even before we left the hospital and had a really poor appetite for the following months. But determined as I was to breastfeed, I knew I had to fuel my body even if I wasn’t hungry. Having prepared meals in the house from friends and family for the first few months really helped keep my weight stable. Since then, I have slowly lost more weight (not ideal) but still am able to breastfeed as long as I continue to be cognizant of my calorie intake. After switching my medications around, my appetite has come back finally, and I am enjoying food once again. Amen!

Not all moms with CF are able to breastfeed, heck not all healthy moms can breastfeed, so I feel really blessed and hopeful that if I made it this far, I can make it to one year and beyond. At my recent doctor appointment, I asked my physician if she thought it was time to stop because I was declining. Her response almost brought me to tears. She said that this would be my only time to give him everything he needs—the immunity and the benefits. She knows how special it is to provide for your baby and that she would never want to take that privilege away from me. She didn’t think six more months would be so detrimental to my health that it was necessary to stop. I really appreciated the way she looked at the whole picture of my experience. As a doctor, she could have advised me that it was time to stop because of my low weight and declining lung function, but she knew as a mother herself, I would have been devastated. A lot of what it means to be a mother is sacrificing yourself because you love your children and hope to give them the best of you. You also can’t pour from an empty cup, and so I know my job is to be responsible with my sacrifices right now. Oh, how much you learn when you are suddenly in charge of keeping a human alive. 🙂

Although only half my lungs are in working shape and I’m a skinny little thing right now, my motivation to stay healthy and push through those tough moments is completely different. Caring for Fenny isn’t physically easy a lot of the time, but I enjoy it so much that it seems simple to me. You really do become a superhero version of yourself once you become a mom. I am exhausted, my body is depleted, I am multitasking always, and yet I live for the moments when he wakes up and flashes his gummy grin. I hold him throughout the day and think how lucky I am that he gets to sit on my hip and I have one less arm to accomplish anything. That’s my idea of a happy life.

 

Love and Light,

J

Our Birth Story

Fenn Gilbert Whitworth came into the world on August 25th, 2017. He weighed 6 lb 14 oz and was 20 in long. It was a Friday morning and the weather was mildly pleasant, but his arrival into our world was fierce.

At about 7:15 in the morning on that Friday, I heard a peculiar pop that woke me up out of my sleep. Drowsily, I crawled on to all fours in an attempt to get my basketball-shaped belly moved from the bed to the bathroom, and instantly felt a forceful flood of liquid hit the white sheets. Whoops….

“My water just broke,” I said out loud dumbfounded to only the cat since Peter had left early to practice a work presentation.

“That was my water. Ok, whoa…I better clean that up. Wow, that’s a lot of liquid,” I thought.

I stripped the bed and hurried myself to the bathroom. I felt calm upon realizing this was about to be a very big day. I think just maybe…. possibly…there was a chance I was too calm? You let me know what you think after reading this tale in its entirety.

Next, I called Peter (who was a couple towns away at a Starbucks practicing his presentation) and my mom (who was at home asleep) to let them know I ruined the bed. Both parties answered their phones, and I warned them not to rush. I was going to pack up, feed the cat, attempt to clean up the bedroom mess, get myself ready, do some other unnecessary things while in labor, and then finally, we would make our way to the hospital and mom would meet us there. The plan was to be induced on the following Monday, August 28th at 38 weeks 2 days, so I wouldn’t say we were entirely prepared for this to be our son’s birthday. We had some bags packed, but I don’t travel lightly, so I had quite a bit to gather up before I felt ready to leave.

Fenn_01

8:30am

Soon after, Peter arrived and we carried all our belongings to the car, double-checking we had the car seat, my Vest, my bag, the baby’s bag, etc. I started having mild cramping like contractions at this point that were about 3-4 minutes apart but still felt calm and comfortable.

Now a day, thanks to smartphones there are great apps to time your contractions. The app even warns you when it would be an appropriate time to head to the hospital. I received the “hospital warning” about four separate times before we even got on the highway. I was mildly annoyed this app was being so uptight and pushy.

Our drive to the hospital was uneventful and my contractions continued to increase in strength while I put on my make-up and made sure I had eyebrows for the big day. Once we were about 10 minutes out from the hospital, I started experiencing contractions that I couldn’t talk through. I knew this meant something about the progress of labor, but I honestly thought I was just being a big baby and labor was about to suck hardcore, so I gave it very little thought.

9:00am

We arrived at University Hospitals and pulled into the Rainbow Babies and Children’s Hospital driveway, a roundabout I have driven through many times before but for a very different reason than the present. In the past, here is where I would surrender myself for weeks upon weeks of IVs antibiotics in the interest of health. But today, I was admitting myself in the pursuit of my hope to become a mom. Life felt incredibly full circle in that moment. Usually when an expectant mother arrives, they bring a wheelchair to help the mama get across the hospital. Passing by my favorite bagel cart, I didn’t have time for those considerations and walked myself to Labor and Delivery foregoing the complementary wheelchair ride.

There, we were checked-in, I peed in cup number 200 of this pregnancy, had the monitored strapped to my giant belly, and did all the other necessary admission tasks. While in triage, the doctor swung by to double check my water had broke, and that I indeed didn’t just pee myself and mistake it for labor. That actually happens, people. Ding, ding, ding! I was in labor! The doctor confirmed my waters did break and that she could see the baby’s hair.

In response to the exam, I thought, “Cool. I must be a couple centimeters dilated and in the beginning stages of labor. This is really happening.”

Oh my gosh, I was so clueless.

9:30am

This is when things really picked up. My contractions felt very close together and were increasing in strength. They would build to the point that I couldn’t concentrate on anything but getting over the hump of the pain and coming back down to the point of relief.

I looked at Peter and quietly said, “If this is the beginning of labor, I can’t do this. I think I need the epidural.”

I already felt tired and it had only been about 2 hours since I was sleeping cozily in my bed. My high-risk doctor popped her head around the curtain and said a quick hello while asking how I was doing. I told her how my water broke in my bed and I couldn’t believe I went into labor naturally. I had been hoping to avoid my scheduled induction and that my body would know when I was ready. She reminded me it might take awhile since I was a first time mom and that she would be on service tomorrow. My heart absolutely sank in response.

“TOMMORROW!?! I don’t want to do this for another 24 hours. Are they nuts?” I thought as I inwardly panicked.

Fenn_02

10:00am

We made our way to another room so that I could get my IV placed before going to the final delivery room. When the doors opened to Multipurpose Room A, it was as if a glowing angel was sitting in the chair waiting to offer guidance in the midst of pain– except it was my mom. I felt another contraction coming and waddled my way to the end of the bed so I could lean over and brace myself while doing some weird head roll to offer some relief. You seriously do some weird things with your body while in labor. So. Very. Weird.

“How are you doing, Janeil?” she asked with a hug.

“Mom, this is the worst,” I said swaying back and forth, white knuckling the bed rail.

“How far are you?” she asked holding me at a distance. “Did they check you? I think you are further than you think.”

Honestly, moms do know best. My mom has seen me in pain many, many times before. She knows that I deal with pain mostly inwardly by becoming very quiet and stoic. She also knows that I have quite a high pain tolerance and my pain scale doesn’t directly correlate with the general public’s. It was must be a CF thing. I hopped into the bed and we started chatting once the contraction was over and the nurse started inserting my IV. A few seconds later, I told her I felt another contraction coming and the nurse asked that I stay with her until she tapped down my IV.

My mom replied, “Already? Your contractions are 45 seconds apart and lasting one and a half minutes.”

I looked at her and said nothing.

“That’s long!”

Fenn_07Fenn_05

10:15am

A few more contractions went by while I squeezed Peter’s hand and in between the rest period, I laid my head back and pretended I was sleeping. I didn’t want anyone to talk to me, ever, ever again (dramatic). Another contraction would build in intensity and the cycle would start again. Suddenly and surprisingly, I felt the overwhelming need to push as if it was beyond my control. My body was in command in that moment. The baby was ready, even if I believed I wasn’t.

Through labored breath I turned to my mom and said, “I need to push.”

“WHAT!?”

“I need to push. Can I push??”

“No!” everyone said in unison. “NOT YET! Blow them away.”

Hurriedly, my mom requested the doctor come check me since she believed I was further along in the process than we all thought. I continued panting and blowing the urge away while we waited. The doctor answered her page to my room, did her business, and her jaw dropped while she examined me.

“What time did you come in?” she asked.

“Around 9:00am,” I moaned slightly.

“You’re all the way…,” she said as she slowly reached over and pushed the call button asking for a delivery team over the loud speaker.

“We need a delivery team in Room A,” she announced.

Before I realized what was happening, my legs were being thrown up in the stir ups, eight more people rushed into the room while snapping on gloves and gowns, metal tools where clanking together, and I was being instructed on exactly how I would bring this baby into the world.

“This is happening, now??” I asked.

“Can you even deliver in here?’ my mom added.

(The answer was yes; you can deliver in Multipurpose Room A as we would soon find out.)

10:30am

The pushing began.

Suddenly, I realized with every contraction that pushing is exhausting work when you’re a tiny woman, only two thirds of your lungs function, and you’re moving a basketball through your body.

Personally, just breathing in between the set of big pushes was the most difficult part of the entire labor process. I could handle the pain, but with each big breath in I could feel myself dwindling of energy as if I wasn’t getting enough air to power my body. There was so much force and pressure from every direction, I doubt my lungs had the space to open and inhale properly.

“Can you throw some oxygen on her?” my mom suggested to the medical team.

Good call, mom! Best decision all day. I am super glad you are a respiratory therapist! Once the nasal cannula was on and the oxygen saturated my tired lungs, I felt my head clear and my energy increase.

“You’re not afraid, you’re not afraid,” I repeated to myself.

Although I had barely any time to mentally process what had just transpired over the last three hours, I knew if I was going to continue pushing and deliver without any pain medication, I had to do it without fear and with confidence. I quickly asked the Lord to deliver him safely out of my body and into my arms. Ok, I was ready!

Peter, my mom, and my nurse Eileen stood bedside and acted as my coach and cheer squad for the next 30 minutes.

“1… 2… 3… 4… 5… 6… 7… 8… 9… 10,” my mom counted slowly.

“Fill those lungs, baby. Fill those lungs!” my nurse chanted while I inhaled as big as I could.

(Honestly, I can’t remember what Peter said. I recently asked him as well, and he said he didn’t remember either. I did feel his arm behind my head holding me up though. Thanks, love!)

Fenn_03

10:50am

The pushing continues.

I pleaded to know how he was doing, what position he was in, and if the head was close to being delivered in between pushes. At one point they said I could reach down and touch his head, but I could barely open my eyes and needed to conserve my energy and focus for the next limitless set of pushes, so I politely declined and told them I was ok for the moment. Other than that, I was a silent and stoic laborer—no screaming, no crying, just desperate inhalations, followed by relieving exhalations.

Towards the end of my time pushing, they told me I needed to quickly roll over on my left side to help the baby because he was under stress. His heart rate had changed and retrospectively, my mom said she felt very worried in that moment watching the fetal monitor.

“Oh, boy. Seriously?” I thought.

Even in that very intense moment, I knew that was not a pretty scene to watch. With a huge watermelon belly pointing up and my legs perched in the air, I allowed them to flip me over in between pushes and then back again.

I send apologies to everyone who had to witness that very graceful moment.

10:56am

A few more pushes eagerly elapsed, and then the world went silent for a moment, and he was here.

His cries filled the room—a cry I felt I knew almost immediately, as if I’ve heard it one thousand times before. Only, this was the first time it would meet my ears.

His little body was plopped onto my chest, and in response, I made noises I never thought possible. Unearthly wails exited my body as I laid hands on our tiny baby. Those wails were powered by an accumulation of an all consuming relief. Feelings of relief that the pain had stopped; relief that he was here safely; relief that I made it through my pregnancy healthy; relief that I finally proved everyone wrong; relief that we had made a good decision almost a year ago; and relief that I, miraculously and heavenly-decided, was finally a mom. His mom.

I touched his head, his long fingers, and his tiny nose I saw on the ultrasounds with each passing week, the nose we guessed if it was Peter’s or mine. I knew he was ours. I looked at his umbilical cord that was wrapped around his neck seconds prior reentering my body and realized that I would gladly spend the rest of my life providing for him without reprisal. That love is real. The rumored love you experience watching your child enter the world—guiding them so unsure and yet determined. That love is immediate and powerful and consuming and scary. Holding him while the many bodies around me slowed to a blur, I just got it.

I so got it.

I finally understood the true nature behind a mother’s love.

Labor was unearthly. Knowing that my broken body was still capable of undertaking something it was designed to do, I never felt mightier or freer of my disease. Simultaneously, I never felt so honored to be labeled as “sick” as I held my baby boy. He is my proof that if cystic fibrosis has imparted any clarity upon the understanding of my experiences, the very brightest is that The Lord has gently humbled me time and time again so that I could experience the true influence of that moment–the power and vulnerability of bringing forth life when your body is so very fragmented. I believe my labor has set the tone for my season of motherhood.

For nine months, I wondered whether my diseased body could handle a natural labor. I prayed for a natural labor so that I could hold onto the experiences when my disease didn’t completely define me. My mom prayed for a labor I could physically manage while preserving my stabilized health. Our prayers were both answered. That morning I chose not to do my treatments and pills unknowingly believing I would have time at the hospital while we waited for Fenn to make his arrival. I never received them. And, that’s why our birth story is so precious to me, because it was a time when I was physically at my rawest, my very truest self; but by the grace of God I was blinded by certain strength and in under four hours, I moved mountains as mothers so often do.

 

 [Thank you to Uncle Christian for these photos of Fenn’s birthday!]

 

First Trimester Recap- Week 1 to Week 13

I consider myself one of the lucky ones looking back on my first trimester. Really, I don’t think my first trimester could have gone any smoother than it actually did. I believe everyone around me has lovingly been a bit surprised by that fact as well–I know I am not the only one. If I am being brutally honest, I thought those first 13 weeks would be a sh** show, and I had realistically prepared myself (and Peter) for the shower of preemptive baby poo coming our way. My initial thoughts: First trimester horror stories + CF = I am going down. Way to have any confidence in your abilities, Janeil. ☹

The reality was I was very aware there were women who spent the first three months with head hanging over the porcelain throne. Honestly, I thought with all the morning coughing I do, I would spend my fair share of time locked in the bathroom with my supreme gag reflex. Instead, I celebrated every time I puked because I knew that was just part of being wonderfully pregnant. I thought with already underlying chronic fatigue, the first trimester would wipe me out completely. Again, that wasn’t the case either. I felt an influx of energy and used that timely wisely. I worried about making it through the first trimester with no IV antibiotics to avoid exposing my developing babe to the harsh drugs. No harsh antibiotics here (minus my necessary daily ones)! I did it! I made it through the first trimester, and I did it with relative ease and healthy lungs!

IMG_0001

So, I consider myself extremely blessed because I know I fall into the minority group of “easy first trimesters”. Maybe the first trimester was so enjoyable because as Peter so eloquently put it, “You are used to feeling crappy”? Better yet, maybe it was all the prayers, support, and well wishes we received lifting me up to a healthier place? Either way, I truly felt great, hungry, a normal amount of tired, avoided IV antibiotics, and more excited with each passing week while baking that babe. Amen! My subsequent thoughts: I would do that 1,000 times over again!

Here’s a little more about my comfy and joyful first trimester being pregnant with cystic fibrosis:

Finding Out: I guess when you are so in-tuned with you body like I am, the benefit of having that connection is finding out you’re pregnant freakishly fast. At just 3 weeks 5 days pregnant, my body told me, “Get up out of bed and go take a pregnancy test because you are pregnant, girl!” And my body was right! Cue tears and hyperventilation.

I told Peter the next day and he was overcome by shock, just as I was. I think we both expected our TTC journey to play out differently and had our doubts we would ever be successful. The stats were not in our favor: about 1/3 of CFers need assisted reproductive technology to conceive and about another 1/3 only conceive after a year or more of trying. So to find out we made a human early on was very much our own little miracle! Overall, the first trimester felt long because we found out we were expecting so early, but it was incredibly joyful.

FullSizeRender

OB Visits: Because my pregnancy is considered high-risk due to cystic fibrosis and also cystic fibrosis related diabetes, I am being monitored entirely by a Maternal Fetal Medicine (MFM) doctor, basically an OBGYN with extra training to handle complicated pregnancies. We decided a normal OBGYN just wouldn’t know what to do with me, and I am ok with that! The following things typically happen at my appointments: I usually get an ultrasound to make sure baby is growing correctly (it’s crazy to see the changes so far– the above ultrasound is 9w6d and 8w6d respectively), we go over my medications to make sure there have been no changes and everything is still safe to take, we go over my blood sugar numbers and adjust insulin as need, we discuss how my lungs are doing, and we discuss my weight gain. Starting at 20 weeks, I will get a growth scan at every appointment to continue to monitor baby’s growth. And from there, we see how things progress and adjust my care as needed!

CF Visits: I am also seeing my CF team on a more frequent basis to make sure I am the healthiest I can be during this time. As usual, I do a pulmonary function test (PFT) to determine how well my lungs are working, discuss my weight gain and calorie intake, adjust my medications, discuss my energy levels and other symptoms, and do a full physical exam. Surprisingly, my PFTs have gone up from 64% to 67% in the first trimester. YAY! Of course, everyone from my team comes in to see and touch my belly while asking all about my exciting pregnancy! I love my CF team so much and their constant support and detail to my care during this time is such an encouragement. I know this pregnancy feels like a huge victory for them as much as it is for me, and I hope I can make them proud by being a healthy mama!

IMG_0010IMG_0015

Morning Sickness: I had a touch of morning sickness up until about Week 8 but focused on keeping my stomach filled to help with the nausea and random vomiting, and it worked! After Week 8, the sickness was gone and there were only random moments of feeling queasy. I felt my morning sickness was very tolerable and ultimately, I knew I had the skills to deal with it (vomiting isn’t really a novel thing in CF).

Appetite and Cravings: Smoothies, fast food (Chick fil A, Taco Bell, etc), pizza, tacos, fresh fruit, cheese danish, different cereals, raw carrots, and brussels sprouts were some of my cravings. Basically, any time I overheard talk about food on the radio or while eavesdropping on a private conversation, I needed said food item ASAP. Pregnancy cravings are really just a step up from my already CF-induced food cravings. Poor Peter has spent a lot of time driving me to different food establishments, but he has always been a good sport about it!

Weight Gain: From December to Week 13, I gained around 8lb (104lb to 112lb), which was very desirable since I was struggling with poor weight gain during the holiday season. My goal is to eat an extra 300- 600 calories a day on top of my minimum ~3000 to 3500 calorie demand to gain between 28 to 40lb. Geez! I just keep telling myself, “Food is fight. Food is growth.” I believe I can get there slowly and surely, and so far I have! I think my healthy weight gain has been the most shocking aspect of this pregnancy so far. Eating appropriately and seeing such fantastic results on the scale is such a foreign concept to me in my normal CF life. As an result, I am so thankful I am putting on the weight we both need to stay healthy, and I am slowly learning to love my new maternity body that can’t fit into any of my previous clothing.

IMG_0029IMG_0043

Fatigue: My fatigue level from the beginning to Week 13 was very normal for me, even less burdensome than normal. There were days were I felt I had more energy than usual and was wondering when the impending fatigue would hit. There were also days were I napped and felt refreshed, and then days were I was tired. Overall, I personally feel CF-related fatigue is much more intense than pregnancy-related fatigue but that just might be me. Hopefully this energy will continue to transcend through the second trimester and beyond!

Other Pregnancy Weirdness: I had your usual cramping and twinges for the entirety of my first trimester. I now realize that all that stretching and pulling was needed because I started to show fairly quickly and developed a bump around Week 9 (and, I know it’s almost anatomically impossible at that point). People kept telling since I am petite, there’s nowhere to go but out. ☺ Who knows! I just went with the bump and embraced the congratulations and belly rubs from strangers.

With all the stretching, I experienced my very first round ligament pains pretty early on around Week 8 during hard coughs. I felt sharp pulling and tightening on the sides of my belly after coughing and then the pain would relax after a few seconds. My MFM agreed such strong coughing can definitely tighten all those muscles surrounding your belly causing sharp pains, and that I better get used to it. I am used to it at this point.

IMG_0102

CF Weirdness: The number one CF/pregnancy question I was asked after announcing we were expecting was, “Can you still use your Vest twice a day for 30 minutes for airway clearance?” The answer is yes! It won’t harm the baby a bit and is an especially important tool to keep my lungs as clear as possible. Eventually, I will have to unclip the bottom buckles to fit my giant belly and possibly have Peter “clap” me to target my lower lobes (form of airway clearance that looks like pounding with cupped hands) but for now, it’s all Vesting. Some women even say their babies are comforted from the shaking and noises of the Vest after delivery because they were so used to hearing it in the womb. ☺

I think the baby will also be used to my coughing, or at least I hope so. On my 12 Week ultrasound every time I coughed, the baby did a little squirm, floated up, and then back down from the force of the cough. It made me laugh and feel a bit bad for the disturbing poor thing. Eventually, baby will learn coughing is just a thing mama does, along with many other weird CF things.

That’s a wrap, people! Thank you for all your prayers and encouragement. I am happy to report how well babe and I are doing so far. Please let me know if you have any questions about this special pregnancy and I would be happy to answer!

Sending love and light,

J and Babe

Our Favorite Announcement

Our hearts grew a little bit bigger this winter as Peter and I learned we are expecting a precious addition to our family. It’s true! WE ARE PREGNANT! And we are so excited to share our happy news with you all!

View More: http://davidblakesleephotography.pass.us/janeil--peter

I’m not sure Peter and I know how to truly express the immense joy, crazy love, or gratitude we have felt already at this point in our pregnancy. The depth of our emotions just can’t be translated to a screen because they are much too big and mighty. At the start of our attempt to expand our family, I think we both expected there to be some disappointment and heartache, a lot of patience, and more faith than we were ready to give, instead the Lord simply decided our time was now. His perfect timing and His certain decision to make us parents of this special baby will always humble me. I still can’t believe we have been so blessed.

View More: http://davidblakesleephotography.pass.us/janeil--peterView More: http://davidblakesleephotography.pass.us/janeil--peter

Truthfully, the past three months have sort of felt like a whirlwind; like we are stuck in a long anticipated dream with no desire to get out. My belly is growing by the day, I cruised through the first trimester as healthy as could be with little discomfort, and I am rejoicing in the weird and lovely terms of pregnancy. I can honestly say I have enjoyed every single day of this new adventure so far and cannot wait to meet our sweet little dream all wrapped up baby-burrito style. This time has been so very special to us. Telling our friends and family have been some of the happiest moments in our lives, and we can’t wait to further share our unique journey of pregnancy and parenthood with cystic fibrosis.

View More: http://davidblakesleephotography.pass.us/janeil--peter

Our special little babe is due to make their arrival on September 9th, 2017, but until then please join us in praying for an enjoyable, healthy, and stable pregnancy. Specifically, pray that my lungs stay clear and unchanging, I can maintain good blood sugar control, and that I am able to gain the necessary weight to keep our babe and I strong and growing. Please keep in mind our physicians who have the difficult task of managing a complex, high-risk pregnancy. We ask that you pray for wisdom, knowledge, and skill while they care for the both of us (Oh, goodness—“both us of” feels so weird to say!). Also, pray for the dad-to-be who will inevitably pick up the slack as I get more and more pregnant, and we experience a bit of transition from just two kids with a furbaby to eager parents with a human baby (+ furbaby). I know we are in for a crazy ride, but as always I appreciate your kindness, love, and support you have given our family.

Overall, we are uncontainably excited, deeply humbled; and most importantly, growing a human. We just couldn’t be happier!

View More: http://davidblakesleephotography.pass.us/janeil--peter

Stay tuned for more love and more baby,

J + P

(A big thank you to my cousin-in-law, Dave Blakeslee, at David Blakeslee Photography for capturing this special moment for us to have and to share. We are thankful for your talent!)

Podcastin’ Adventure

HELLO, HELLO, HELLO! I have missed you all so much and am excited to be getting back to blogging and sharing. I hope 2017 has been joyful and productive so far for you!

This past weekend, Peter and I sat down with a special dude, JD Caminero, who is the creator of a Cleveland-based podcast. “Quote Unquote” is a podcast focused on simply just telling people’s stories, and I was excited to get the opportunity to share mine. It was fun, difficult, and emotional to voice the special way I get to live my life because of CF. So, thank you JD for having us as your guests! We enjoyed connecting with you and hearing about your hope for your podcast.

If you choose to listen to the podcast, you’ll hear me coughing and clearing my throat; you’ll hear me get out of breath and struggle to talk for long periods of time. I thought I might be embarrassed hearing that, but honestly that’s daily life with CF. It was hard to talk for that long without working my lungs! Great job lungs!

I hope you enjoy what I (breathlessly) have to say and take something from it. I hope 2017 is a year where you turn your face towards the sun.

Sending Love and Light,

J

img_0942

 

 

Cotton Anniversary 

Two wonderful people tied the knot this weekend surrounded by their friends and family making it a happy and treasured past few days. I absolutely got caught up in the beautiful flowers, happy tears, and nervous smiles of the betrothed as they met each other at the end of aisle; but my observation of the vows has morphed into a deeper and greater experience following my own bridal march. What used to be a grand tradition of hopelessly romantic daydreams is now a more solid and applicable knowledge of what it truly means to promise your life to someone for all eternity.

This ceremony was no different- a fragrant and beautiful dream of devotion and spoken promises fueled by love said through eager smiling faces. Amidst my own silly permanent grin as an audience member, it dawned on me that of the two standing on the altar, it was very unlikely that one squeezed the other’s hand a little harder on “. . . in sickness and in health” as I did two years ago today.

Entering into marriage, I like to believe Peter and I were prepared for all the special obstacles that would come our way due to my health; but honestly, I’m not sure I believe anyone in my generation is slightly prepared for marriage. Marriage is tough business, folks. A happy and meaningful relationship is intentional, flexible, and progressive— adjectives unthinkable in a society saturated with instant gratification.

What didn’t occur to me back then was that most couples entering into marriage are healthy and vibrant twentysomethings and the realities of those vows “in sickness and in health” are far faded away by a murky trajectory of life. But for Peter and I, “in sickness and in health” was our now. It would always be our now and a significant feature of our marriage. It made our relationship special.

Has marriage with a chronic illness been easy? Absolutely, not. My disease has been felt deeply by both of us, in different ways I am sure. Moreover, just as in every other part of my life, the influence of CF has highlighted the very depth of my understanding of love. It’s given me a unique lens to view our marriage through, which is why gushing over my hunky husband right now is as easy as pie. When I think about the reasons I love Peter most though, his fearlessness and willingness to love me- my uncertainty, my burden, my lifestyle, my expectancy, my perspective- tops the list.

Peter took on a new life that would require him to work harder and love deeper with the knowledge of the possibility of losing it sooner. He has always been calm and encouraging when faced with our reality. That’s why at the end of each day, I fall asleep undeniably knowing I am wildly and fiercely loved by my husband.

And that is my dream come true.


Am I going to say Peter is an expert on everything CF? Heck no. Dude, doesn’t know the difference between albuterol and hypertonic saline. But, he’s always willing to learn in an effort to become a better caregiver- something I appreciate so very much. I might have once giggled as my mom instructed him on the how-tos of hospital sheet changing upon admission, or teased him when he learned to access my port while adorned in gloves and a mask, but what I realize now is the loving force of his intentional devotion.

Our young marriage is different. Our lives will always be slightly different than our peers in similar stages of life. Our priorities and goals have to be focused and planned in an effort to experience it all despite CF, and sometimes, our goals will be rewritten. Daily, I am reminded of the promise he made to me because I see him fulfilling those agreements through his actions- every time he moves my plethora of machines from one side of the house to the other, every dinner he has ever cooked because I have been in bed, and every extra hour he works so that I have more hours to care for myself. He has done it all out of love- just as he promised.

These past two years have been so much sweeter and far more superior because of that sunny Friday afternoon when Peter held my hands and vowed to love all of me- every last mutated cell.

Happy 2nd Anniversary, Peter! We made it to Cotton. I love you so very much!

(Congratulations, Katie and Steven!)

#31daysofCF

Happy, happy June! The month of May, or CF awareness month, is long gone by now but I saw the #31daysofcf challenge on Instagram in early May and liked the thought of it. Each day you are to cover a different topic in the realm of CF and I thought it very informational. (Also, you’re very welcome I saved you from enduring 31 pictures of CF on my Instagram account last month- that’s just too much. I need more cat pictures, I think.)

Below are pictures from the CFF Great Strides Walk at the Cleveland Zoo. The biggest thank you to those who purchased a t-shirt, joined us in walking on that very cold day, or donated to our team. You made it a very happy and humbling month!

IMG_7656_WEB

1. Diagnosis: I was diagnosed at age 4, which is slightly unusual (2/3 of CFers are diagnosed by age 1). I had no respiratory symptoms but suffered terrible stomachaches, stomach distention, and poor weight gain. The doctors were really clueless and frankly, didn’t believe anything was wrong. A very persistent doctor drove my mom to a nearby hospital and a sweat test showed I had CF on August 4, 1995.

2. First year- worst year: I don’t remember much of the first year because I was a 5 year old and as happy as a clam. I do remember my sweat test and my favorite nurse (which I still see to this day) explaining my pancreatic enzymes could taste like strawberries in my imagination. My mom probably has a different version of the first year: I had just been diagnosed and shortly after, my father was diagnosed with terminal pancreatic cancer. I am sure for my mom this was the most challenging and heartbreaking year of her life. She was and is the best caretaker in all realms of her life.

3. Medication $$$: Medication costs with CF (any chronic disease really) are astronomical. Orkambi, the first medication to treat the cause of CF, retails at $259,000 year- not even kidding. Pulmozyme, an inhaled medication I take twice a day, is $72,000 a year. Of course, I have primary insurance that covers a large portion of these costs but even the co-pays per a month would bankrupt you when you take 18 different medications a day. I am VERY, VERY, VERY thankful I qualify for an adult CF program from the State of Ohio which covers the remaining cost of my medication after my primary insurance. Hospital stays, doctor visit copays, clinical tests, and home IVs are a completely different story. It ain’t cheap being sick, ya’ll.

4. Illness + hospital admissions: I have lost count of my total admissions over the years, but my first admission was at age 11 for IV antibiotics (which is pretty dang good by CF standards). My longest stay was 41 days in high school. In college, I started “dorm” IVs so that I could continue going to school and reduce my hospital stay to only a weekend. Last year I was on IVs 5 times, which has been my worst year yet. Thankfully, I now bypass the hospital completely and begin IVs at home because my doctor is a rock star and that’s where I am most comfortable.

5. Diet: High-fat, high-protein, high-salt and high-calorie. This is why I am always eating :D.

6. Clinic: I have been going to the same clinic at Rainbow Babies & Children’s Hospital in Cleveland since my diagnosis and love the staff there. I could not say better things about my clinic. I even serve on their CF Quality Improvement Team as their only patient representative.

7. School: I am thankful that God has blessed me with intelligence and quick comprehension. In 4th grade, I missed 114 days of school due to CF and still don’t know how to multiply fractions. I had a tutor some years to instruct me when I was absent for extended periods of time, but I made it to Case Western and graduated with a Bachelors in Anthropology, Minor in Psychology and a Certificate in Global Health (still in the mix of getting my masters), so I did all right, I think?

IMG_7542_WEB

8. Non-compliance: Middle school and early high school were my non-compliant years. I didn’t physically feel like I needed my treatments and I was a snotty teenager. My mom had it rough for a while and we fought a bit before I got my head out of my butt.

9. Greatest accomplishment-biggest challenge: This is a tough one for me. I think my greatest accomplishment is just being genuinely joyful. The Lord has blessed me with consistent happiness despite everything, and I am grateful I wake up feeling that way most days. Lots of CFers (people in general, too) have anxiety and depression, and thankfully, I don’t suffer from either of those. My biggest challenge has been reminding myself that I need to stop comparing my life to the lives of my normal peers. It’s ok I don’t work full-time in a career, have a 401k, and I hop in bed at 8pm most nights. My life looks a little different and comparison is the thief of joy.

10. Pros + cons: Pros- Unique perspective, gratitude, faith, empathy, focus, strength, relationship with my mom and sharing my experiences. Cons- fatigue, pain, coughing, mucus, limiting my ability to work, feeling dependent on medication and others, and the financial burden.

11. P words: PICC line, port, pills, physicians, poop, pseudomonas- that’s all I have.

12. Cracking point: My cracking point was probably last fall. I was tired all the time, not sleeping, started Orkambi, suffering from chronic pain, and felt pretty horrible but my lung function was pretty good. Working full time was exhausting me and I had little energy to enjoy life otherwise. It was very confusing and I felt very burdened trying to be “normal”. Now, I feel much, much better after finding a better balance!

13. The first time I heard that big word (or phrase): “pregnancy in CF”. I remember being 13 and getting “the talk” from my peds CF doctor. Back in 2003, he said having a baby when you have CF is difficult but some women do it. You have to work for the opportunity to be pregnant and after that it was more of an “if” than a “when”. Other options included using a surrogate or adoption to preserve health, otherwise planning a pregnancy was important. That stuck with me forever because up until then I didn’t realize my disease would affect my ability to experience typical milestones.

14. Out of the mouth: “You’re so little.” “You eat a lot.” “Are you sick again?” “Do you need water/cough drop?” “Where have you been?” “You’re still hungry?”

15. Organ donation: Donate your organs, it’s really as simple as that. Double lung transplants, kidney transplants, and liver transplants are fairly common in end-stage CF. So many people pass away while waiting on the list due to organ shortages. Make your passing a time filled with hope and thankfulness for another suffering family. P.S. I am an organ donor as well!

16. What is that?: I hear this most often when someone sees my Vest for the first time or when I am in a bathing suit and my port is visible. Sometimes it’s just a puzzled side-eye look, but don’t think I don’t know what you are looking at.

IMG_7606_WEB

17. My support system: My mama, Peter, Sybil (of course), my siblings and cousins, and special friends in the CF community.

18. Hygiene: Germs are dangerous to CFers. When we catch the common cold, the chronic infections and the cold virus battle for resources in our bodies and can exacerbate our CF and become really serious. I don’t live like a germaphobe but many CFers do in order to stay healthy and out of the hospital. Wash your hands, cover your cough with your elbow, and get your flu vaccine, please.

19. Smoking: Ugh, smoking. Of course, I hate it. On one side, I don’t understand why you would choose to damage a perfectly good organ. But on the other side, I recognize the control addiction can have on someone, even someone who loves you and sees you struggling to breathe, and so I don’t really get upset when I see my family members smoking. Everyone needs grace and I have the opportunity to give it to them.

20. Family: I am the only one with CF in my family but we are unsure how many members are carriers. Within my family, two brothers married two sisters causing a group of double cousins who will also especially need to be tested before they have children, along with my siblings.

21. CF friendship: The CF community is crazy connected. Mostly, people talk online since we are encouraged not to be around each other due to infection control guidelines. It’s really hard not to be able to hang out in person with the only people in the world who “just get it”. I have bended the rules a bit this year and I don’t regret it!

22. The life of a CFer: Managing CF is a full time job. I do my Vest around 14 hours a week, treatments around 20 hours a week, cleaning and managing equipment around 4 hours a week. I take ~35 pills a day and continually watch my blood sugar. Add all this on top your average life of working full time (I work part-time now), managing a household, and having time and energy for a social life…. It’s almost impossible.

23. 5 minutes of fame: Salty Girls, working on The Salty Life Magazine, getting recognized in a townie bar for this blog- so funny!

24. Biggest wish: My biggest wish is to carry a pregnancy, be an exceptional mom, and have a nice garden to sit in with Peter. Underwhelmed by that wish, haha?

25. Biggest fear: My biggest fear, both on a micro and macro level, is missing out. I have extreme FOMO when my family hangs out without me because I am busy, too tired to do anything, or stuck in the hospital. I can’t handle it. I also fear I will miss out on life- pregnancy, raising kids, reaching milestones, or even silly family parties after I am gone. Also, that one day they will remove Friends from Netflix.

IMG_7503_WEB

26. A legacy like no other: I want to leave a legacy of empathy. CF has taught me so much about other people’s pain and I feel like I have an ability to experience their pain with them. I think bearing witness to someone’s struggle is one of the most important things you can do to support them.

27. My wish for CF: A cure for the people who feel like giving up, for the parents with children with CF, and for the young adults struggling to make really difficult decisions at such a young age.

28. Remembering those who lost their battle: This past year I signed onto facebook and saw too many posts about CFers passing away. It was a tough year for our community. Each passing is just as sad as the next, and I am always so heartbroken for their families they leave behind. I never talk about the life expectancy of CF on my blog, mainly because it’s not something I choose to focus on on a daily basis. But the reality is, expecting to live only to your early 40s is not good enough. People fight so boldy with this disease, and I always take a moment to remember them when I feel I am taking advantage of my own health. I am so very blessed to be where I am.

29. Fundraising: Fundraising is so important since CF research receives almost no federal funding. Thank you to everyone who supported our fundraising endeavor by purchasing a Flowerlungs t-shirt or joining us on the Great Strides Walk! Your support is so very appreciated and humbling and you are making a difference!

30. Raising awareness: The past year has really been a time focused on raising awareness about CF for me personally. I get to live this special life and therefore, I have a responsibility to open up and educate those around me. To me, awareness brings understanding, understanding builds empathy, and empathy accelerates change.

31. Thank you: Biggest thank you for reading this and making it to day 31! I hope you learned a tid bit and continue to enjoy your month- whatever that looks like.

-J

A Fervent Love

Happy Mother’s Day!

To all the women who have sacrificed because they love their children more passionately than possible, you are greatly appreciated and adored. Thank you for being our mamas! Enjoy the sunshine and know you are loved today and always.


I believe in the unparalleled and fervent love of mothers. A love so bold, so encompassing, and so very selfless that begins long before birth and spans beyond the stiffness of time. Collectively, moms fix the hurt, celebrate our happy, and love outside conditional limits. They are a fierce force of protection eager to guard and give to shape a small life. Sacrificially, moms follow one simple rule: love your children with all your might.

And they do, beyond reason, beyond appreciation, and beyond awareness.
2016-05-06_Photo1.jpgMy mama is uniquely very special (a fact- not an opinion). She’s a single parent (the only parent I have truly known), a respiratory therapist, a three-time cancer survivor, a listening friend and counselor, and the most dedicated caregiver. She has tactfully served so many roles over the years, but I have been blessed to know her in a very different context than my siblings: a mom of a child with a life-threatening chronic disease. Particularly, this version of my mom always outshines any standard of exceptional motherhood; the length of her love and the depth of her love are endless.

2016-05-06_Photo4

If I sat down to type out every time my mom held my childish hand at the sight of a needle or decided her own needs and wants were second to my health; for every ounce of anxiety and grief she replaced with comfort and refocus this post would be never-ending. I can’t recall the sum of minutes she has spent hugging me or the many difficult conversations she has endured unruffled so that I could be the blubbering mess. I don’t know the exact amount of money she has dedicated to hospital bills and medication or the number of nights she lay awake with worry. She protected me from the scary reality of my disease and gently handed over pieces and parts of my truth when it was time and I was ready. She understands my limits and still yearns to indemnify them- lovingly, helpfully, and encouragingly.

2016-05-06_Photo52016-05-06_Photo3Moreover, her greatest service is that of the living example she sets by repurposing very ugly moments as fuel to a faithful and fighting spirit. Never needing to craft stories of strength and resistance, she fully embodies those qualities. She is tough and knowledgable, yet gentle and funny. My mom has guided me in recognizing a sincere truth: financial stability, success, and supposed normalcy will never be as valuable as the Godly love you show those around you, the attitude with which you fight your hardest battles, and the gratitude you allow to fill your heart. Those are the important bits to hold on to in this life.

These lessons have been the greatest gift a sicko can learn from a woman who has given everything in support of your life, health, and happiness. I will be forever grateful for the time we have spent alone, just the two of us, waiting for appointments or seeking further healing while enjoying the company of someone you know loves you beyond understanding.

I love you, mama! I know that I was carefully selected to be your daughter so that I could learn to fight like you. Thanks for being my fervent mother, always loving and eager to care.

2016-05-06_Photo2

 

Great Strides + Snazzy Tees

One of my own unfortunate personality traits is that of being a slight pushover. I really, really naturally dislike making people feel uncomfortable or requesting they do things that inconvenience them. It just makes me feel icky all over and so I do it sparingly. Bleh.

For months, I have struggled with deciding whether I should form a team for Great Strides, the annual 5k walk and fundraiser for the CF foundation, or just wait until next year. We have a lot going on in our family right now, i.e. special showers, weddings, medical diagnoses, and a new baby on way, and I figured no one really has the time to fund raise or make Great Strides a priority. And, rightly so.

The truth is, paired with those excuses, I doubt my own ability to ask people to care quite often. And even after making the Facebook event and launching the booster for team tees, I am still doubting my ability.

This has been a hard transition in my experience of battling a chronic disease: opening up enough to share this part of my life and balancing my own perceptions of making others feel uncomfortable- or better yet feeling as if I am asking them to take on a piece of my burden. Only upon doing so have I realized that the result is an overwhelming return of the most honest support and encouragement. A kind of support far greater than expected and more desired than I ever knew.

Flowerlungs_Tshirt

To everyone, thank you for caring, reading, carrying a piece of CF on your shoulders, and supporting my shaky vulnerability. You have shown me that it’s ok to request solace during your struggles and to wish to share in your own triumphs. I love you and will forever be grateful.

We would love to have every single one of you walk for Team Flowerlungs to support medical research and improve the quality of life for CF patients in the US on May 14th at the Cleveland Metroparks Zoo! Bring a buddy and come share in a beautiful day at the zoo!

How to get involved:

1) Join our team! All we need you to do to become a member of our team is click on the “Join our Team” button. The walk is free and from there you can make a donation or start your fundraising.

2) Can’t make it the day of the walk? Be a virtual walker and donate to any of the existing team members! Your donation will be used to help improve the quality of life for CF patients all over the US.

3) Order a tshirt and wear it proudly! Proceeds from the tshirts will be happily donated to Cystic Fibrosis Foundation. They are snazzy and designed by my Peter :).

With a heart full of happiness & gratitude,

J