On the 27th of December 2013 I burst out of the hospital doors, finally discharged a month after giving birth! I had my baby in my arms and was filled with a feeling of relief, excitement and just to top it off...a high fever. This set the tone for my first year of motherhood. After recurring bouts of mastitis, low milk supply, a tongue tie, CF, a completely unsettled baby, moving house and feeling like a complete failure I think I can tick it off as the shittest year of my life.
One of the biggest parts of CF treatment is physiotherapy. Adjusting to the role of motherhood and having someone completely dependent on you is hard enough for the most stable of women to deal with. Imagine adding onto that life changing responsibility ANOTHER task. A difficult task with a tiny unsettled baby who feeds every hour for about an hour then cries endlessly in between. Physio for little ones like Oli involves percussion where you have to 'pat' his sides, front, back, shoulders, his lungs really to loosen any sticky mucous that's stuck in there. This is recommended for 15 minutes twice a day. 5 minutes in each position.
I don't know about you but in the early days of motherhood I didn't know day from night. I barely knew my own name some days! I had NO routine I had NO IDEA what the hell I was doing! Let alone creating a schedule for physiotherapy.
I struggled to get the physio done and when I missed it I grilled myself endlessly. I felt like the worst mother on the planet because not only I couldn't cope with motherhood but I wasn't tending to the physio that my newborn's life depended on!
One night I went onto a CF Facebook group and asked about the physio. How people fit it in and that I couldn't get on top of it. There was a mixed response, some people were of the attitude of DO IT RIGHT NOW! Your baby will get a chest infection and diiiiie!!! And others were like relax, do it when you can.
I'm much more in the 'relaaax!' camp these days. I wish I was told 'go home just get to know your baby, process the horrible experience you have been through and then come back and see us in a month or whatever reasonable amount of time to learn about physio.
I understand physiotherapy is essential to a cf sufferers overall health. However as a midwife, nurse and (now a slightly more experienced) mum I think that the early postnatal period especially following a traumatic birth is SO vital for bonding between the newborn and parents. My time with Oli was clouded from the NICU then unimaginable guilt of dealing with physio and CF in general.
I would have absolutely loved if someone came to my house in the first few weeks of being home and educated me about looking after a CF baby. What to expect, feeding, the enzymes, unsettledness, whats normal or abnormal, slowly introduce physio. That would have been a dream. Perhaps I should suggest the job to the CF team? Elect myself as a CF midwife! Now that would be amazing!! Other cf mum thoughts??
These days physio is still a battle but in a different sense. Try getting a two year old to do something he doesn't feel like doing and you will know your alive! We do our physio in the mornings and just once a day then increase if Ol has a cold or cough. People vary their treatments and I know a lot of parents would be horrified about once a day but it works for us and our little trooper has been well since we left the hospital so TOUCH wood it stays that way!!