Disclaimer: I would just like to point out that at this early stage in Harriet’s life I am well aware that we are currently on minimal medicines and treatments. I know that over time this will increase as cystic fibrosis is a progressive disease. Also this is our experience, hence the title, MY CF baby, and everyone does things differently. The point of this post is to show that CF doesn’t stop our little one having a normal life, something I thought wasn’t possible when she was first diagnosed.
So I had this great idea that I would do a series of ‘day in the life posts’ at different stages of Harriet’s development. I planned to start with a day where she was in good health and what happened? Yep, she got sick. So I thought about scrapping the whole idea but then after some thought decided to go ahead with the day I had chosen as it is real life. Also, I had no better ideas! Maybe some parents will disagree with my decision to take Harriet out and about while she is under the weather but life is for living and she had a fun day with her family…
Thursday 28th January 2016
1.20am Starts coughing. Great. Harriet has been out of sorts for the last few days. Off her food, grumpy, not sleeping properly, bright red cheeks, snotty nose and coughing. Sounds pretty standard for a baby’s first few years but slightly different for us in that she has cystic fibrosis. Every cough is a worry. I had rang our team as soon as she started presenting cold like symptoms but was advised to give her to the end of the week to see if she could fight it off herself. Over the first year Harriet has had so many courses of extra antibiotics I’ve lost count. On a positivenote she hasn’t had to be admitted to hospital for IV’s as she has always responded so well to extra orals. After trying and failing to settle her back off to sleep I try her in our bed which results in another failure. After a few rounds of musical beds, a lot of dummy throwing and pacing up and down she finally goes back to sleep at 3.30am.
5.30am Wakes again. Foolishly I think she will go back to sleep after being up for two hours in the night; nope, she wants up. I try to leave her to cry, timing it on my phone to five minutes max as this is about all I can stand, and I also have neighbours! I cave and bring her in and let her have the iPad. She sounds chesty so at 6.30am I decide to do her percussion physiotherapy while she watches Peppa Pig.
7am My eldest gets up and we head downstairs to have breakfast. I start by making up Harriet’s morning medicines. Fortunately it is her lighter day and only have five syringes to prepare. Tomorrow morning she will have seven and judging by how she is now I’m betting by Saturday we will be adding two more to the mix.
I tried to give Harriet her creon and omeprazole which we sprinkle on Apple purée before her breakfast but she refuses, pushing my hand away, spilling the contents of the pills all over. Going to be one of those days. She really is never like this so it is quite stressful to say the least. She is usually the happiest, most compliant little thing! Weetabix refused, banana thrown onto the floor and I give up. Time to get ready.
9.15am Harriet falls asleep on the way to playgroup, what a surprise! I end up sat in the car to let her catch up, make my weekly call to the chemist to order some of the medicines we are running low on.
10am She wakes up and we go off to play! For the most part she was happy as Larry, bumshuffling all over, playing with her sister and cousin. There were grumpy moments but a lot less than there would have been if we had stayed home that’s for sure!
11.30am Off to grandparents’ house for lunch. My mam had made a lovely dinner of mince and dumplings with mash, veg and gravy. Harriet refuses again. This is getting ridiculous. Afterwards she was offered a rusk and she did eat some of that then Grandad cracked open the milk chocolate buttons and sure enough she managed to eat them!
2.00pm My sister and I head to a local soft play with the girls. It is brand new so lovely and clean which pleases me! After last night’s escapades Harriet falls asleep in the car again. In fact she is so zonked I manage to carry her in without even waking her and she stayed asleep in my arms while her sister and cousin played.
2.30pm Harriet wakes and has a brilliant time at the soft play. At one point she was crawling up the slide – she doesn’t do crawling! Up until now she has always bumshuffled! Lots of physical activity for her bouncing around all afternoon; great physio!
4.00pm We head home. Harriet has her second lot of medicines before her evening meal as she goes to bed so early, being so young. Three syringes as a starter before some cute mini hotdogs to eat. She did actually give these a go but was way more into the tomato sauce! She then polished off some rice pudding which put me at ease a little. At this point as long as she is eating something I’m happy.
6.00pm After a bath and getting ready for bed Harriet has another twenty minute physio session while watching Peppa Pig. As annoying as it is, it is the only way I can get her to lie still for any length of time so needs must! Harriet then has a 200ml bottle of cows’ milk which she drank all of, smiley face. She actually fell asleep whilst drinking it so I had high hopes of a peaceful night!
7.15pm First wake up – she has only been asleep twenty minutes, if that! It’s going to be another tough night and I will be making the call to the hospital first thing. Whether it’s teething or a cold I am pretty sure by the way she is coughing now that CF is playing its awful part. Fingers crossed for her but in the meantime we continue to fight and raise funds and awareness. Please help us.
To find out more about cystic fibrosis and ways YOU can help click here.