One year already!

It’s hard to believe that a year has passed since my baby girl , Rebecca Grace was born. She was born at 12 midday on 10th February, weighing 4lb 11oz. And just like her Mummy was born with EHK (Bullous Ichthyosis). The day of Rebecca’s birthday brought back lots of memories as if it was just moments ago. The skin on her tiny body was stripped raw, and she was taken straight to NICU. While in the NICU her skin improved a little and she fed well and continued to grow stronger. The thick skin on her hands began to shed, and resembled candle wax in appearance. This didn’t fully clear until she had been home for several days.


Rebecca at just 3 hours old just before she was taken to NICU

She was in NICU for 2 weeks, and the hardest part for me was coming home without her once I was well enough to come out of hospital myself after the birth. Leaving her at the hospital was heartbreaking, but even so I knew she was in good hands (despite the fact that the Dr’s etc continuously asked me how she should be treated, and suddenly I was the ‘expert’ in their minds because I already had the condition myself).


Rebecca shortly after being taken into NICU in the incubator and as she was for the two weeks she was in there.

Well, a lot has happened since then. My baby girl, although still quite small for her age, is continuing to do well, is very strong and loves her food (just like her Mummy, and Daddy come to that haha), and her personality shines through the obvious pain she is often feeling. Of course she gets blisters, cracked and broken skin frequently, but somehow she still manages to smile through it.


Rebecca at 5 months old

Over the last couple of months, her big brother Daniel has been helping his Mummy and his sister with her creams and even with her baths. He loves to help out, helping Mummy to get everything prepared for Rebecca’s cares. He even puts the gloves on by himself that I use to put her creams on. He then gets a cotton wool ball and dabs it on her skin gently as if to be washing her too, it’s so sweet. Even Rebecca herself has started to rub the cream in by herself. I’ll never forget the first time I saw her do this, I had a tear in my eye. I put a little bit of cream on her tummy and said to her “Becca do rub-a-dub” (as I call it for Rebecca’s benefit) and she put her hand flat on her tummy and started to rub the cream in with a huge grin on her face as I praised her for being such a clever girl. I can’t tell you how cute it was to see.

Rebecca isn’t walking yet, but her legs are very strong. She is however, trying her best to crawl though, which is something I thought she would never do because of her skin. I am so proud of her.


Rebecca with Daddy and big brother Daniel on her birthday

Happy first Birthday sweetheart, I love you lots, my brave girl xxxx



Rebecca and Daniel with Mummy