Summer's birthday

Hello and welcome to our story, a space we promise to be honest no matter how happy or sad we feel. We hope you enjoy being a part of our ongoing journey, so let me start by telling you where it all began..

After 40 totally perfect weeks of blissful pregnancy, totally unaware of just how crazy my life was about to become I was sat on the sofa with my boyfriend Paul on a sunny Saturday afternoon. Paul & I were laughing and joking about all our adventures the previous year in glorious Australia, sharing memories and photos. Paul had done an impression of a wild character we had met over there which made me laugh so hard at Paul's impression I told him off for making me pee myself. It wasn't until a minute later I ran in and told Paul it wasn't pee it was infact my waters breaking. Yes Paul broke my waters by making me laugh!!

Paul grabbed my bags along with the baby's bag and phoned my mum. My dad drove myself, Paul and my mum to University College London Hospital on Warren Street, London where I was due to give birth to our baby (gender unknown).

I walked into triage on the lower ground floor feeling weirdly excited until i was met by a midwife who examined me and told me to go home as I was not yet contracting but to come back in by 8am the next morning. We did exactly that.

7:30am we were back in triage and yes i was a thousand percent sure i was contracting. With meditating music in the back ground Paul and my mum laughing at my breathing techniques my labour was perfect and so relaxed.

When the midwife came in to do one of her checks on me after being there 7 hours it was time to be transferred up onto the labour ward. I walked up to the delivery ward on the second floor and was met by an 8 month pregnant midwife getting the gas & air ready for my arrival.

After 5 full hours of being dilated the Doctors and midwives came into my room to do handover. We knew all along we would have to have baby Doctors present at birth as baby would need a helping hand.

My peaceful labour quickly turned into an emergency forceps delivery.. my baby was born, the room fell silent - you could literally hear the Doctors thinking, something wasn't right. My eyes shot over at Paul.. 'well did we have a boy or a girl?' Paul asks the Doctors: Doctors 'Girl'. The look of pure fear in Pauls eyes I knew something was not right. Four baby doctors hovering over my baby at the end of my bed - she wasn't breathing. After failing to resuscitate her the doctors quickly intubated her (placing a tube into her mouth to hold her airway open). What is your daughters name one Doctor asked, Summer I smiled and she was laid in my arms for 10 seconds before being whisked away to the Neonatal Intensive Care Unit. I needed further treatment so was kept on the ward.

I'd force Paul every 3 minutes to go to NICU and see if Summer was ok and beg him to take tons of pictures so I could see her and what she looked like.

A long and painful ten hours later I was wheeled down in my hospital bed to my daughter's incubator in Nursery 2. Pure strength and Love hit me like a thousand bricks. She made it!!!

Teeny tiny 8lb 3oz chunk wired up to every machine in what felt like the room. She had a Nasal Pharyngeal Airway in her right nostril (a tube going up through her nose down to the back of her tongue holding her airway open) and a Nasal Gastric feeding tube fitted in her left nostril. A probe on her right foot lit up red to check her heart rate and oxygen levels and optiflow gently flowing a mixture of oxygen and air into her already busy nostrils.

This tiny little life stole my heart from the minute we exchanged eye contact. This little girl was fighting with everything she had and we were right there fighting with her.

Pierre Robin Sequence was Summer's diagnosis. A condition made up of three things: a small chin and set back jaw, glossoptosis - a tongue that slips back obstructing the airway and a cleft palate. Only 50 babies a year are born with this condition in the U.K. Doctors aren't sure why this happens in pregnancy but assured us the chin is the last facial feature to develop on a babies face and growth along with Summer's tubes were her best form of medicine.

After a long and teary week in the UCLH Neonatal Unit we were sat by Summer's incubator when the nursery doors burst open and two ambulance drivers appeared - it was time to be transferred to Great Ormond Street Hospital for Children.

I pinched myself so hard it instantly bruised when I laid eyes on what Summer was being put into to be transferred. It look like a coffin on wheels, pinching myself forced me not to cry - if I were to cry now I wouldn't stop. The ambulance drivers slammed the lid shut and wheeled her outside into the waiting ambulance. Anxiously sitting in the back Paul and I avoiding eye contact as the blue lights and sirens went on. I felt my body like prickly heat fill with goosebumps and my stomach filled with knots, every hair on my arms stood up. I'd never been in an ambulance before, this is petrifying.

We arrived early Sunday afternoon at Badger Ward on the 8th floor of the hospital to be greeted by the nurse in charge - Badger Ward is the respiratory ward. Summer was admitted onto the High Dependency Unit. Instantly they had to change both tubes from up her nose as they used different equipment to UCLH which was hell to watch. And then it was time for visitors.

Me and Paul were so unsure if we even wanted to be surrounded by people other than family, only they understood it seemed.

Summer spent six days on the High Dependency Unit before moving to her own room off from the nurses office. We'd joke to every family member that visited that they had better brag to everyone they knew that Summer - at the age of 13 days old has her own room with an en suite.

While we were on Badger Ward the nurses trained Paul & I in tube feeding as Summer will have her Nasal Gastric tube in for around a year because of her cleft palate. OK so we had to remember to feed her every three hours and give her medicine four times a day. We also then while we were there had to learn how to make Summer's prong (NPA) we would cut the tubes to length and sew them onto the holders and tape them ready to be fitted.

After 13 days Paul and I had passed the tests we needed to pass in order to care for Summer at home. The most exciting news we had been given since she was born...

WE CAN GO HOME AND BE A NORMAL FAMILY!!!!!!!!

Being a family at home was amazing, we'd fight over feeding her and fight over cuddling her. It was magical.

Until three days into Summer being home she caught Bronchiolitis. Because she had a Grade 4 airway the infection went straight to her chest causing extreme dipping of the chest and pulling at her throat. Things were bad, she was really struggling to breathe. We took a trip to our local A&E at Barnet Hospital in North London. The receptionist buzzed us straight into paediatric Unit behind A&E and Summer was rushed into recuss. Vaportherm was balancing up her nostrils and stuck down on top of the tubes she already had up her nose. The paediatrician immediately fitted a cannula into her teeny tiny hand and put her onto a drip. Vaportherm is similar to Optiflow - it gently gives a flow of oxygen and air to take the pressure off of her breathing alone. The nurse turned up the vaportherm and Summer started inflating like a balloon, she got so big my gut instinct ripped out of my stomach and forced me to rip it out of her nose - she looked like she was going to burst!!! Seconds later she projectile vomitted everywhere. She was put back on vaportherm but on a lower rate.

We spent three nights admitted on Galaxy Ward in Barnet before returning home.

This occurred three times in the space of a month and a half. 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.

After three admissions in the space of a month and a half Paul & I were determined to be strict with whoever came in contact with Summer. Everyone was to wash their hands thoroughly before touching her and anybody ill was forced to stay away.

Fathers Day was Summer's last admission. We had succeeded in being strict!!!!

Time at home with our precious baby was amazing. A baby who sleeps all night and laughs all day - a total dream come true. We started building our confidence with taking her out more and more. Totally besotted.

Now After 7 long months learning and dealing with all the care that Summer needs along with all the medical visits etc Paul & I feel ready to share with you our story.

Its been a whirlwind of emotion and pain but I am glad now we are familiar with her condition we can share the ups and downs of our life so far with you and our journey onwards from here.

Thanks for reading the first chapter,

Jessica x