It's been year since Oli's birth and a bit longer since his diagnosis of CF. I'm constantly reflecting on things I wish I knew or did differently in the early days. Hindsight is a wonderful thing hey? There were so many things to get our heads around with a new baby not to mention the life changing diagnosis of CF. It's not just the practical things like enzymes and medications, nor is it the physiotherapy or hospital admissions and appointments. It's the sheer disbelief, the reality of a chronic disease that's thrust it's way into your life. It's a tough pill to swallow, something so devastating that you can't control. Something that's silently just there, not obvious like to bruise or a cut you can see and fix. There's so many facts, words, statistics, research. Words like 'outcomes' and the one I really hate.....'prognosis' are thrown around. These words shouldn't be flying around any newborn! There should be comments like 'cutest baby ever' and ' look at those those teeny tiny toes!'
Within a group of CF mums with babies around the same age as Oli I posed a question... what do you wish you knew when you brought your cf baby home from hospital? I found a popular answer with an overwhelming response. They wished they had just enjoyed their babies for what they were...a beautiful new gift of life. Not a disease. This really resonated with me, I feel as if I was robbed of a carefree, joyful pregnancy and as if I was unable to enjoy my newborn. This was not only because of his acute medical problems but the lingering thoughts of CF. In the back of my mind I was wondering what would happen next...
Would it start with a cough? How many weeks till we are admitted to hospital again? The meds, when's the next dose? I'm not doing enough physio, I should do more....but he's feeding so much... Whens the next appointment? Where should we park? Is he going to get really sick soon? He just spluttered is it a cough?! Every surface and thing in this house is probably harbouring bacteria that will harm his lungs...Cant go to the shop or socialise because of bugs....
The thoughts went on and on! I guess what I'm trying to say is that I wish someone sat me down and said to me 'Here are the basic things you need to know' ;
1) Ezymes - Must take with feeds, make up fresh. Only lasts 30 mins.
2) Meds - Specific instructions, make a routine to work in with dosages. For example..
Morning - Antibiotics & Salt
Lunch - Probiotics
Dinner - Antibiotics & Vitamin
3) Bugs - Be careful with who sees your baby and mindful of the common coughs and colds that could be dangerous around ANY newborn.
4) Physio - Discuss with physio. Our physio didnt feel it was suitable to start percussion so early after surgery so we were able to wait a few months which was amazing.
Now with a brief overview of these to last you a few weeks go home. Go and enjoy your baby. Get into the groove of being new parents, a new mum. Recover from birth. Establish your breastfeeding, allocate dad the enzymes and meds so you are sharing responsibilites. Build that connection between mum, dad and baby. Become a family and parents before you are plunged into the deep end of hospital appointments, opinions and advice. Cuddle your baby and love him just for him. Don't worry - so easy to say I know! Try not to worry about the cf, it's not an acute illness. There are acute aspects of it, like tummy problems from incorrect enzymes etc but the nature of the disease is that it's chronic. I guess this is positive in a way as it highlights my point. You have time on your side! Time to enjoy your baby and do all the wonderful things that new families can do. Of course in some circumstances, this is impossible. Meconium ileus is common in babies with cf leading to extended hospital stays and surgery not long after birth. In cases like this I would still encourage parents to have that time when they get home. Just to bond with their baby and to create that family connection, I cannot emphasise this point enough. I just wish I had time with Ian, Oli and I, Just relaxing, calm, peaceful time to say '...oh my goodness look at this beautiful baby WE created together' instead of a bazillion things relating to CF and the impending doom of sickness that never actually happened.
It's easy to say all this now as I sit here a year on. At the time I did everything I needed to do to get me through and to cope with the difficult situation we were in. Next time I will try to step back, and take a breath. I will accept the things I cannot change and I will find strength in myself, my husband, my babies and family. I will cherish every squishy moment of having a newborn and when I feel strong and ready I'll seek information. There's so much time to learn, ask questions and gain knowledge yet the time your baby stays a newborn is so short. They grow so quickly! I wish I hadn't spent so much time worrying about the what if's. In the NICU I did have some time just to cuddle and soak in some newborn magic but this was in a stressful, full on environment. I didn't do it when I got home because I was too stressed about the huge responsibility that is CF! Below are some comments of other cf mums about what they wish they knew..
How to just enjoy your baby. CF felt so overwhelming those first few months I barely remember the baby stage. Hug, snuggle and enjoy your newborn. There is no reason to know everything at the beginning and it is totally scary. Rather than practical things I wish when my son was a newborn I had someone to tell me not to waste those precious early days/weeks/months being sick with fear and worry over when will he get sick and what will his life be like and grieving on his behalf for the life I wanted him to have. I really needed someone to tell me that this is exactly the life he's meant to have and it needs to be full and filled with wonderful happy memories not spent locked in the house in fear of getting sick! Yes he will get sick, yes he will spend time in hospital but it's such a tiny tiny part of who he is and everything else has to come first.
I think most people should be informed that breastfeeding is great, and things like that.
You need to be your baby's voice so if you think something is wrong keep pushing for answers. After months and months of my son being in constant pain at close to 12 months he was finally swapped from Creon to Panzytrat and bam cramps gone But I had to fight for it!
That their are groups like this, state associations, cf parents all going through / gone through a similar thing!
We all went through the same feelings. We all felt the devastation, the worry and the fear of whats around the corner in terms of illness and pain. I want to shout it from the rooftops, just ENJOY your baby! Oli has CF, it's who he is and it makes him...him! However like one of the mums said above, it's such a tiny tiny part of who he is. I just wish I knew in the beginning that it wouldn't rule our lives forever. That we would get on top of the treatments, physio and finally accept that it's a part of our lives but it's not our life. Cystic fibrosis is not our life, it's a small part of who we are. If the situation arises again I won't let it fill my mind when I'm trying to bond with my newborn baby. Even ocassionally these days I let it absorb me, especially around appointments and hospital visits. I have to force myself out of the negative mindset. CF can wait! God knows it ain't going anywhere!