Our daughter, Imogen was born on 24 March 2005 at 27 weeks by emergency caesarean section at UHCW (University Hospitals Coventry and Warwickshire), weighing just 990 grams (2lb 2oz) due to Mummy suffering from pre-eclampsia. She was rushed straight to the Neonatal Intensive Care Unit where she stayed for a total of nine weeks, followed by five weeks in the Special Care Baby unit, two weeks at Birmingham Children's Hospital and finally five weeks on the children's ward at UHCW before coming home on 15 August 2005, aged five months.
Imogen was ventilated at birth and after a few attempts was put onto a CPAP (continuous positive airway pressure) machine. Daddy got to visit Imogen first and Mummy saw her 24 hours later – she was so beautiful but extremely tiny – our hands completely covered her. The first time we touched her was wonderful but scary; it was so hard to see her lying there and not being able to help her.
We had our first cuddle with her aged three weeks, which was magical. She was as light as feather but the feeling of that first cuddle was an indescribable emotion and we just wanted to take her home. We certainly didn't want to put her back in her incubator and go home without her.
She was born with a small hole near her heart that did not close with antibiotics and she underwent a heart operation (PDA Ligation) at six weeks old at Birmingham Children's Hospital. It was extremely difficult to see her being ventilated again and having to say goodbye as she went into theatre. The operation was successful and she came off her CPAP machine and on to oxygen at seven weeks old. We were also able to dress her for the first time in her tiny 3lb pink babygrow (which was still too big).
During her stay on the Neonatal Unit she had to have numerous blood transfusions and receive light treatment for jaundice. Imogen had her first milk feed (1 ml) on 12 April down her NG (naso-gastric) tube.
She suffered from bradycardias and desaturations, where her heart rate and oxygen levels dropped and on many occasions she had to have a bag and mask and be helped to breathe again. The lowest level her oxygen dropped to was 12%. She was often very pale and poorly after these episodes; we usually had to leave her to rest afterwards when all we wanted to do was have a cuddle. Due to her noisy breathing and desaturations she was transferred to Birmingham Children's Hospital at 14 weeks old and had an operation to remove some cysts from underneath her voice box.
Imogen suffered with feeding problems and often found it difficult to control her suck, swallow and breath co-ordination. She came home being tube fed through an NG tube. She was very cheeky and pulled these out on a regular basis (usually every day), which were replaced by Mummy at home. We fed her through this continuously overnight and topped up her feeds throughout the day when she couldn't cope with the bottle.
It was a very emotional day when she came home. It was the day we had dreamt of but following many setbacks and problems we never thought we would see. To be able to hold our daughter and have as many cuddles as we wanted was incredible – our little fighter had fought her way to be home with us.
To help her with her feeding, she had an operation to have a gastrostomy fitted (a tube inserted into her tummy) for feeding and medicines. She currently has an overnight feed, as she doesn't eat or drink enough during the day and is still connected to a SATS monitor at night, which alarms if she has a desaturation.
Following many operations, hospital visits, input from various health professionals, and her continuing health issues, she has grown into a beautiful and fun-loving little girl. She started mainstream school in September 2009 and despite her difficulties has been welcomed into the school and is doing well.
We became involved in the Grace Research Fund to give something back for all the help and care that was given to Imogen and ourselves during our neonatal journey. We also want to help other families who are going through or who will experience the special care journey.