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OUR Cf journey and my reason why

The only thing more terrifying then finding out you’re pregnant with twins is that they have an in-curable illness. This blog is to share our Cystic Fibrosis journey, to help continue spread awareness about CF and the reason why I started ‘It’s a Twin Thing’.

Lorraine  X

OUr first few weeks

Genevieve and Penelope were delivered at 34 weeks via planned caesarean section. They weighed 2.3kg and 2.6kg. My placenta may have been starting to fatigue but it did a great job at growing two big (comparatively speaking), strong babies. 

They stayed in special care the first day/ night for monitoring and were in my room the second day. They were not maintaining their temperatures and went back in their incubators for night two. On day three they were out again and our little girl Madison (who was 18 months old) was able to come and meet her new baby sisters. 

I was pumping around the clock and attempting to breastfeed. Both Genny and Penny lost too much weight and ended back in SCU and had feeding tubes placed. I was discharged from hospital but was able to keep my room as a border so we could come and go as we pleased. It felt like every morning we came in the nurses and doctor had more bad news for us. 

Over the first 2 weeks they had a lot of tests, x-rays, were attached to extra monitors & glucose drips. They had suspected Cows milk protein allergy. They were given a 12hr fast, in order to clear their systems to try them on a specialised amino based formula.

Then it happened. When the girls were 17 days old we were sat down and told they have tested positive for Cystic Fibrosis. My heart dropped. I had heard of CF, I had seen CF, I was heartbroken. My poor babies. The only thing more terrifying then finding out you’re pregnant with twins is that they have an in-curable illness.

The doctor hadn’t told us they tested positive on their heel prick test but had waited for genetic testing to be done. I understand why, she didn’t want to cause us stress without being 100% sure. 

What did this mean for our babies? What did this mean for my family? So many questions! My husband and I told our parents and turned our phones of for a couple of days. We needed time to processed this diagnosis. The hospital was able to team us up with the paediatric CF specialist the very next day to help give us a run down and answer all our questions.