After three miserable visits to recuss in Barnet Hospital, Paul & I were convinced this was now our life. Something together we would potentially have to make normal. Our baby was safe and well did it matter we were always in hospital?

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Summer was born in April. Her last admission was in June at Barnet Hospital ~ Galaxy Ward.

Paul & I took Summer, then just two months old to our friends beautiful wedding. Summer fell ill and was taken into hospital the very next day. I remember just how guilty we both felt that we had rushed into being a normal family, taking Summer out everywhere we went. Almost like it was our fault she fell ill.

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Summer was admitted for two nights when she fell ill and her breathing was worse than ever before. Same situation as last time but much much worse. Straight into recuss, cannula into her left hand because the Doctor couldn't get a vein from her right hand because they had all been used the previous two weeks before. Back up to Galaxy Ward.

I'll never forget the morning the nurse came into our private room and told us the Doctors were thinking of letting us come home two nights after admission.

She gently took Summer by the hand to remove the cannula out of her teeny, tiny hand being so gentle and careful not to make it bleed and popping the smallest plaster on I had ever seen. The nurses in every single hospital were so kind and so caring. After she took out Summer's cannula, she took the vaportherm out of her nose being so gentle as the prongs from the vaportherm balanced over summer's nasal pharyngeal airway (the tube holding her airway open) and her nasal gastric (feeding) tube, all stuck down together. My babies face looked so sore from all of these plasters.

Was I ever going to get to see her face? It broke my heart.

But she was well.. and that is what we had to cling on to.

The Doctors came into our private room and shared the news we'd heard so many times before.. 'you're free to go mum with baby' is what they'd say. And all that sprung to mind was here we go again...

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For the third time I packed up our room, dressed Summer and put her into her car seat. I hadn't yet got the memo of the adaptors you can buy to link the car seat to the pram wheels... down I carried her car seat and out of the hospital. The sun blinded me. It was a glorious Saturday morning around 9am. And it was also fathers day - Paul's first fathers day. My dad picked me and Summer up from the main entrance of the hospital and drove us home without anyone knowing. As we got home I lifted Summer out of the car and we snuck upstairs to surprise Paul who was getting ready to meet us at the hospital. I'd already got his presents three days before being rushed into hospital, luckily. We had a lovely, relaxed day and evening, mum made us all an amazing dinner - even my sisters were here. We were all together again.

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Summer was born with a small airway, this means that her tongue slips back over her away and closes it completely stopping her from breathing. Throughout my blog I refer to her airway as a 'prong', 'breathing tube', 'NPA' or its real name which is Nasal Pharyngeal Airway.

(I am silently pleased with myself for not only being able to pronounce it but also spell it!)

An NPA's job is to go up through the nose & down into the back of the throat and hold her tongue forward helping her to breathe. Each month we receive a delivery of tracheal tubes, tube holders and stitches. I find an evening a month to cut & stitch together the tracheal tube and the holder cut to the size Summer needs. I also have to make emergency sizes which are thinner and shorter incase for any reason the normal size she has does not go in. Once a week, usually on a Friday night Paul & I have to take Summer's breathing tube out and refit a new one as it blocks easily. This is such a horrible job, one we wouldn't wish any parent to have to do.

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Summer also has a cleft palate, she misses 25% of the roof of her mouth at the top. Because of this she has an 'NG', 'feeding tube' or its real name which is Nasal Gastric tube. This tube again goes down through Summer's nose, all the way down through to her stomach.

She is fed 6 times a day, once through a silicone bottle where she can take anything from 20-45ml and the rest goes through her tubie. Once a month we receive a delivery of just over 1000 syringes in sizes: 5ml, 20ml & 60ml. We connect a syringe to the end of her NG tube to feed her.

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Along with all the hospital visits she is also under a speech and Language therapist and a Dietician who visit twice a month. The dietician recently calmly asked me how I felt about tube feeding Summer, I explained that tube feeding had become a huge part of our daily routine and that I didn't know any different.

The point is, is that once you're in a routine and you understand the care that needs to be given etc both this lifestyle and this routine becomes completely normal.

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The day we were discharged from Galaxy Ward on Fathers Day was the last time we were there.

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We were coming home for good.

Thanks for reading,

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Jessica x

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