Gemma was born in May 2010 at 28+2 weighing 650g. The couple of days before are a bit of a blur! I went into maternity triage when I was 27+2 as she wasn’t moving as much as she had been and they listened to her heartbeat and said all was well and the lack of movement was because she was breech and I just couldn’t feel it.
I had my regular midwife appointment at 28 weeks and went in in tears because I knew something still wasn’t right. She measured me and said I was measuring small so called triage to let them know I was coming in. After a teary call to hubby and work I waited on him to collect me and take me to the hospital. Little did I know I wouldn’t be back to work for 15 months! The team were great, a growth scan was done and various other tests and the consultant said the baby needed to be delivered but they hoped to be able to give me 2 sets of steroids to help her lungs. She was only measuring around 24 weeks and was not getting enough nutrition from the placenta. I was monitored regularly and luckily got both sets of steroids before having a C-section at 28+2. Before she was born we met Maggie and Mo from the unit who explained what would happen and arranged for us to look around the unit and we met Jane then.
Graham got to see her briefly after delivery and again once she was settled in her incubator. It was about 8 hours after she was born before I got to see her. We were so pleased to hear her cry when she was born.
Here she is at a couple of days old:-
The nurses and doctors on the unit were fantastic and we can never thank them enough. She was ventilated for a couple of hours but by the time we saw her she was breathing by herself, covered in wires.
When they say it will be a rollercoaster, it definitely will be. A couple of days of being stable and you are frightened to get excited that some progress is being made then back 2 or 3 steps all of a sudden. These little ones deteriorate very quickly but the miracle is how quickly they recover.
Gemma had a lot of setbacks with infections but her main problem was her bowel. From the very start the consultants were monitoring her and after numerous x-rays, bloods and tests at 6 weeks (weighing around 800g) she was diagnosed with NEC. Stopping feeds and antibiotics didn’t work and the surgeons at the Sick Kids came to assess her. She went downhill very suddenly on the morning of her surgery and was lucky to make the journey. After a long time in surgery the surgeon came to let us know all was well. They had removed some dead bowel but she was left with a good amount of bowel and her oxygen requirement improved as they were working. She was left with a stoma and they hoped to reverse that in a few months after she was home.
A month old, first family photo:-
All in all she had 6 operations before she came home. Putting in central lines as her veins were ruined and she needed prolonged TPN. Shortly after she reached term she was transferred to the Sick Kids so that the surgeons and GI team could review her daily. Her stoma was reversed shortly after that as she was not tolerating feeds.
After 2 more suspected cases of NEC, line infections and viruses progress with feeding was made including the introduction of some solids and bottles. Until she was around 7 months she had no oral feeds other than a small amount of milk from a syringe on occasion.
The day Gemma got home from the Sick Kids, over 8 months after she was born:
When she got home she was being tube fed (NG) for 12 hours a day. As she learned to drink more bottles this was gradually reduced to 2 hours overnight.
Here she is on her 1st Birthday :-
3 months before she turned 2 the tube was gone for good and we were so proud of her. She is still on high calorie prescribed milk and the amount of food she is eating is not large but since the tube went she has started to enjoy food and improving everyday. As with everything she will do it in her own time!
She is now a very cheeky and fun girl with determination in everything she does. We are all looking forward to her second birthday this weekend and doing the Toddle for Scotland in June to raise funds for SSCB.
We know looking at all the stories and pictures in the reception area really helped give us hope on days we really weren’t sure our baby was going to come home with us. Hopefully hearing our story will be useful in the same way for others.
Sam, Graham and Gemma