31 DAYS OF CYSTIC FIBROSIS
There’s No Point Having a Baby if You Can’t Be a Mother
Day 15: Juggling Cystic Fibrosis and a baby
As Jarryn arrived a little early, he spent his first ten days in the special care nursery. At 2.5 kg, he looked huge compared to the other babies. Just as he was ready to come home at five days he developed jaundice. After a couple of days doing phototherapy, he received the all-clear to come home.
With CF interfering with my digestion, I was told I wouldn't be able to breastfeed. It’s hard enough for a person with CF to maintain their own weight — but I decided I was up for that challenge too.
I ended up breastfeeding for 18 months — not too bad for someone with malabsorption issues due to a dodgy digestion system. But I needed to eat twice as much as I normally did to maintain a healthy body weight.
Juggling act
Most new mothers tend to place their needs last. I had to juggle to ensure that I could continue to be a mother. Because I knew that the moment I slipped, and stopped looking after myself, CF would strike.
I’ve never been the best with this coordination thing, but I quickly learned how to juggle Jarryn with hand and keep doing my treatments with the other, or shovel more food in so I could keep us both going.
Popping Jarryn into the bassinet bouncer and gently rocking him with my foot, was the only way I could do physio. And I took all the opportunities I could to go and nap at my Gran’s house.
When Jarryn started walking, I again modified my physio routine. This time I adapted Jarryn’s playtime so I could do breathing exercises as we played.
Stolen minutes
I always knew that looking after a child could pose more risk to my health than pregnancy. In many ways, my parenting practices could be viewed as selfish, but taking the time to look after myself to ensure that Jarryn continued to have a mother, was always a top priority.
I took every parenting shortcut I could because I needed every extra minute I could find. Stolen minutes meant I could do my physio, or rest a little longer on the bad days.
Reading has always been my way of pacing myself. When Jarryn was a baby, I’d often drive to my Gran’s house, and let her look after Jarryn while I lay on her bed and read.
A sinus infection tipped my health upside down
My health stayed stable, without need for hospital admissions or intravenous antibiotics until Jarryn was three — then I got a sinus infection that quickly ran out of control.
It was an infection that ultimately cost me 10% of my lung function. For the first time in years, everything else failed, and I needed IV antibiotics.
Fortunately, by this time, the Hospital in the Home (HITH) program was up and running. It allowed a person with CF to spend the first few days in hospital, and then continue the IV antibiotic course at home.
With a toddler, I wasn’t interested in spending the three days stuck in hospital, so I convinced Uncle Gerry (my CF specialist) to let me go straight home after I had my PICC line placed.
Although HITH allowed the flexibility of staying at home, it meant I was responsible for both drawing up my medications and giving myself the push dose through the PICC line. Via @cysticfibrosiswa I also had access to both a nurse and physio — which made life a little easier.
After that sinus infection, IV medications twice a year became my normal, but the beauty of HITH was that I could still look after Jarryn, study, and go to work.
31 Days of Cystic Fibrosis Bonus Fact
I spoke on a CF and Parenting panel when Jarryn was still a toddler. One of the audience questions was about keeping medications away from curious hands. My reply then was I had no trouble; everything was always kept well above Jarryn’s reach.
That statement remained true — Jarryn never touched anything he wasn’t supposed to. Rotto, on the other hand, thinks the lovely rattling sound of the medicine bottles is fabulous. He’s learned to jump like a mountain goat, knock things over, so my medication is now locked up like the Perth Mint to protect Rotto the Rotten.
31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with
the national Cystic Fibrosis (CF) awareness month in Australia.
Next in the 31 Days of Cystic Fibrosis series — Growing Up When Your Mum Has Cystic Fibrosis
My son’s perspective — I often wondered what Jarryn thought of his childhood, and if he felt he missed out on things because I had CF, so I asked him.
If you’ve just joined the journey and want to start at the beginning, you’ll find the first post here:
