Blog post by Jennifer Little
Daisy-Mae was born in Dudley on 1 December 2013 at only 25 weeks. She suffered medical conditions including two grade two brain bleeds, five blood transfusions, one albumin transfusion, collapsed lungs, PDA (Patent Ductus Arteriosus, a heart disorder), and suspected Necrotising Enterocolitis (NEC, a bowel infection) on three occasions. She was unable to maintain her own blood pressure.
Just a few hours after her birth, she was transferred by the specialist neonatal team to Wolverhampton, a level three unit capable of dealing with the most premature and sick babies. On arrival we were told that Daisy-Mae was very poorly and her lungs had not received the benefit of the steroids she had been given. The doctors said it would be touch and go for some time.
Daisy’s lungs were extremely poorly and after two failed attempts to take her off a ventilator she was given dexamethasone, another steroid which thankfully worked. As well as that, she very narrowly escaped ROP (Retinopathy of Prematurity) surgery, and also encountered numerous life threatening infections.
Daisy was also unable to cope without caffeine medication which helped her breathing until she was almost three months corrected. On every attempt to stop caffeine during the hospital stay Daisy would have to be resuscitated, until it was decided we should go home on caffeine and wean her off it gradually, which needless to say was quite nerve wracking. She also had to come home on an apnea monitor.
Our journey was full of ups and downs and we nearly lost Daisy on many occasions. We were told several times that she may not make it, but we never lost hope and always knew that she would find the strength to battle on. After 108 days, on 18 March 2014, five days after our expected due date, we finally got to take our beautiful precious baby girl home. She is now a healthy beautiful little girl and turns one in just a few weeks.
When Daisy first went into hospital my partner Wayne started a Facebook diary to share his feelings with friends and family and also to keep everybody updated on her progress.
Soon friends and relatives grew into thousands of people following Daisy-Mae’s journey and Wayne’s heart-felt posts. Daisy’s Facebook page now has over 23,000 followers.
The Facebook posts become such a hit that there were regular posts asking him when a book was coming out. A follower spotted this and passed the details onto a friend who owned a publishing company. A few Facebook messages later, telephone calls and a meeting, and a publishing deal for a book was signed.
The book, ‘Little Daisy-Mae: the girl who couldn’t wait’ is made up of Wayne’s Facebook posts, but also the letters that he wrote to Daisy every day which were not shared on Facebook, charting our experience as we waited to be able to have our baby come home. It was released on 13 September, at Daisy-Mae’s christening, which was an event we never thought we’d be able to have.
The book is on sale, with £1 from every sale going to charities including Bliss. We have also decided to donate a copy to every family room in every neonatal unit in the UK. Through other fundraising events we have raised over £20,000 already, and hope to raise more with the book, and also help support other families and babies who find themselves in similar situations, so they can read it and perhaps find some comfort.
Take a look at a video of Daisy-Mae’s first four weeks in hospital