The Sunday Curse
'We had officially become tenants of Galaxy Ward to the point where even the breakfast lady knew me by my first name.. no seriously its true'.
Luckily we live two doors away from a paediatric consultant who is so amazing and has come to our rescue more than once!
Running Summer's child farm bubble bath one Sunday afternoon, both me and Paul could not work out why Summer was crying. This was all new to us as Summer is our first baby and we were still learning her. She wasn't hungry, she wasn't tired, she had a clean nappy.. what on earth was wrong with her?? I started undressing her ready for her bath when I noticed Summer's Nasal Gastric (feeding) tube was sat on number 7... it was supposed to sit on number 23. The little monkey had pulled at it while we were busy running her bath. Our community nurses worked Monday-Friday 9-5, so we called upon our amazing neighbour who refitted her NG. phew....!
From here on we fell into The Sunday Curse..
Summer's last admission on Galaxy Ward in Barnet hospital was a week ago to the day when she was rushed in because we couldn't fit her breathing tube into her nose as her nostrils had swollen so much from suspected bronchiolitis. She stopped breathing almost immediately due to her tongue slipping back over her airway and blocking it, she slowly turned blue. I'll never forget the sheer look of fear in her eyes. Panicking and trying to remember our Basic Life Support, Paul calmly laid her back down and fitted her emergency tube which is thinner and shorter bringing her back round Thank God!! Sobbing I held her for hours after.
Bronchiolitis is common in babies and they usually get over it quite easy with calpol and lots of sleep. Not a baby with PRS. As soon as a baby with PRS catches bronchiolitis they are most likely admitted into hospital.
Babies with Pierre Robin Sequence are born with small airways so once they catch an infection their breathing is challenged straight away and deteriorates quickly.
One lazy Sunday afternoon we were in our bedroom at home about to watch a film when completely out of the blue Summer started gasping loudly for breath. We picked her up, we tried to calm her down but nothing was helping, infact her breathing was rapidly getting worse. We knocked on our neighbours door who came to examine Summer and she suggested to phone for help. Paul grabbed my phone and frantically dialled 999 requesting an ambulance. In my pyjamas and wet hair from the shower I jumped up, ran downstairs and tried to pack a baby bag.
Within 8-10minutes the paramedics stormed in and straight away did not like the look of Summer's breathing and wired her up to an oxygen tank. Strapped in the back of the ambulance we sped off with both the lights and sirens on. Here we go again.. The Sunday Curse.
We arrived in minutes and was rushed out of the ambulance and straight into recuss. Clinging onto my baby in my arms for dear life while balancing her oxygen mask (which she hated) over her face - we walked in and saw hundreds of faces none of which we actually remember - just a total blur. We were met by the same team we had seen the week previous, a team of 8 specialists waiting, all huddled round an incubator. I gently laid summer down into the heated incubator and stepped back ready for the team to save our baby. My eyes filled with tears, my arms filled with goosebumps and my heart pounding as we couldn't help but hear a man being brought back to life in just the next cubicle. Please save our baby I cried to a Doctor frantically!!!
The nurses calmed us down and made us coffee. We wasn't going anywhere. We were in recuss for 4 hours while they were stabilising Summer's breathing before being admitted to Galaxy Ward.
Galaxy Ward is the children's Ward on the second floor right opposite where I had my 20 week scan with her when we first moved home from Australia in December before we were transferred to UCLH for further scans.
Another Sunday Curse, another sighting of bronchiolitis, another few sleepless & stressful nights in a different hospital.
Is this our life now? Is this now normality? Will Summer live in hospital forever? Was she going to die? How can I save her? Can I save her? Were all the thoughts running through my mind as i sat on the edge of the parent bed next to her in her hospital bed.
I felt totally helpless. I was at this point merely the lady that gave birth to this beautiful baby. The nurses were feeding her. The nurses were dressing her. The nurses were doing all of her care. The nurses done everything.
Paul came straight to the hospital once he'd finished work the next day when I burst into tears the minute I saw him. I sobbed for hours wondering if I would ever feel like Summer's mum or if the nurses would act like this forever?
Another nights stay on the ward and another meeting with the breakfast lady, who yes remembered mine & Summer's name from our last stay..
Shortly after breakfast the Doctors done ward round. We were met by a Consultant who connected with us immediately. He sat and calmly spoke to us for 45 minutes, understanding Summer is our first baby and all the stress we must be under. I will always remember this consultant as he constantly asked how we were - the parents, how we were feeling. He also asked me to never feel like Summer's condition was my fault just because she grew in my tummy. This man got us. This man over all the Doctors and nurses we met took an interest in us - the parents. He explained to us the first year of Summer's life in particular will be very tough. He was always honest and for that i will always be grateful, for he changed my entire mindset.
Thursday lunchtime we were finally discharged, as soon as I heard those words I put every item of clothing I had packed for Summer on her, swaddled her in her car seat and shot out the door. Please this time can we stay home longer if not forever.
This is the part Paul & I turned super strict. This was never happening again.
Sunday Curse:
Summer was born on a Sunday - resuscitated, intubated and put into Intensive Care.
Summer was transferred via ambulance to Great Ormond Street at a week old on a Sunday and had two nasty tube changes.
Summer's Nasal Pharyngeal Airway wouldn't go in one Sunday therefore stopped breathing and was taken in to hospital.
Summer caught bronchiolitis and was blue lighted into hospital on a Sunday.. TWICE.
The Sunday Curse
Thanks for reading!
Jessica x