This tiny little miracle came into the world at just 23weeks and 6 days gestation, weighing 650grams. Her battle to survive began. Betty was fragile and so very sick. Her journey has been incredibly difficult and she has been so close to leaving us too many times.
She fought through those first weeks and we immersed ourselves in learning to do what we could for her. A gentle wipe of her eyes still fused shut, a nappy change through the incubator door. Expressing milk for her every few hours.
We baptised Betty when the doctors told us they were doing all they could for her but it was up to her now. It could go either way. She was struggling to survive.
She turned her first corner but soon the cycle of her making tiny amounts of progress and then becoming very very sick again, began. People talked about it being a rollercoaster. For us it is like a terrifying game of snakes and ladders that doesn’t seem to end. Betty moves forward, she climbs a ladder and those positives no matter how tiny get us through that minute, hour or day. Then we hit a snake, but over and over again and it feels like we are just going backwards. There have been so many dark days.
Betty’s bowel perforated in 2 places due to her extreme prematurity so she had 2 10cm sections removed and had stomas which have since been reversed early as her liver was struggling. Her gut will never be normal. She succumbed to infection too many times and time off the ventilator never seem to last long. We began to lose count of how many blood transfusions, blood cultures and lumbar punctures Betty had.
Living with the fear of what each day will bring is pretty difficult. Betty has overcome so many hurdles. She has chronic lung disease, an adrenal insufficiency, her thyroid doesn’t work properly. Her growth has been poor due to her bowel surgery and repeated infections. She had a bleed on the brain. Her brain is small and her pituitary gland looks small. She has calcium deposits on her liver, kidneys and spleen. She has been tested for some rare diseases due to all her complex problems but thankfully those tests were negative. She had stage 2 Retinopathy of prematurity and has some delayed visual behaviour. We don’t know yet how her sight will be affected.
After over 6 months at the neonatal intensive care unit (She was the oldest baby there) Betty had finally made some good progress. She was on low flow oxygen to support her breathing and needed to work on learning to feed. Then things took a turn for the worse, she began to struggle and needed more oxygen. Betty deteriorated quickly and was put back onto a ventilator. She had seizures and had to be paralysed so that she couldn’t fight the ventilator. Heart scans showed she had developed pulmonary hypertension and we were told that she may not recover. She was treated with nitric oxide and we just had to sit and wait and see if the treatment worked. Betty fought so hard yet again and responded well to the treatment but when the doctors took her off the ventilator she collapsed quickly and it was clear that there was a problem with her airway. We got her stable again but she needed her airway to be looked at and other specialists to help move her forward.
On 1st February Betty left her little home and Liverpool family ( amazing nurses,doctors and friends) at the Liverpool Women’s NICU, to begin the next stage of her journey at Alder Hey children’s hospital. She had a scope of her airway and we were relieved to hear that there was nothing structurally wrong but that Betty had some very bad swelling from having so many ventilator tubes. Time would be the only thing that would hopefully allow this swelling to heal but it needed to be time without any more ventilation. Easier said than done with a baby as vulnerable as Betty is. Home began to be ‘talked’ about.
A couple of weeks later and Betty was struggling with her breathing again and needing more oxygen support. We were frightened and then the worst happened. She worked so hard until she couldn’t manage anymore. She crashed and was rushed to theatre. It was felt that the safest option moving forward for Betty was to give her a ‘safe’ airway. On the 16th February 2018 Betty spent 6 hours in theatre and had an emergency tracheostomy. We were devastated, overwhelmed and so consumed by the fear of losing. She was back in intensive care, paralysed and heavily sedated on a ventilator.
Betty is just amazing. She has recovered and adjusted well and has made it back to low flow oxygen through the tracheostomy for now. She is the most delightful, placid and brave little girl. A nurse once said to us, ‘Betty brings out the best in people’. She is so very special.
We are fearful of what lies ahead. Betty has serious health problems and having spent the 9 months of her life so far in Hosptial, has lots to catch up on. But she is here and that in itself is a miracle. No matter what, we will all continue to love her with everything we have and one day bring her home. Our family needs to be back together again and a new journey will begin.
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