Monday 9th April 2018.

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We headed off for our double appointment at Great Ormond Street Hospital at around 1pm, our appointments were 2:30pm and 3:30pm. Once we arrived at the hospital we checked into cheetah's outpatients on the lower ground floor, we sat in the first waiting room for around 20 minutes before being called in. Summer was weighed and the nurse also measured her height. The nurse showed us the next waiting room to go to ready to be called in to our appointment. 

We sat in the second waiting room for almost 2 hours when Paul decided to ask the nurse what had happened to our appointment that had gone by while we waited. Finally we were called in.

We stood up, untangled Summer's feeding pump as she was being fed while we waited, and walked into the room. We were met by a sea of eyes welcoming us into the room, the surgeon, a dietician, a speech and language therapist, a dentist, an orthodontist and a phycologist. 

It was the first meeting we had with Dr Rorison, Summer's surgeon, she answered all the questions Paul & I had and went on to look in Summers mouth. Dr Rorison nodded, ''I'm positive we can close her palate with just one surgery''. Paul & I let out a sigh of relief - that brilliant news. After this appointment we were sent back to the waiting room to wait for our second appointment this time with Summer's paediatrician Dr Salma. We were called in as soon as our bottoms touched the seat. Summer was still linked to her feeding pump so we paused her feed while the Dr done her examinations. It was only half way through this appointment we realised both of these appointments had been Summer's pre-op appointments.

The nurse smiled at us and said ok lets talk pre-op, ''are there any specific dates you can't have surgery on''? I smiled, felt a little silly and replied please not Saturday 5th May as we are having a 1st birthday party for Summer and its all been arranged. The nurse gleamed and said no problem at all, surgery will be around 6-8 weeks, you will receive a letter in the post.  

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And sure enough later that month we received a letter in the post stating Summer will have her surgery on Thursday 17th May.

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Thursday 17th May 2018.

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We were woken up early by the sound of our alarm clock pouring into our room, it was time to wake up, get ready and set off in our car. Our bags sat at the front door, they had been packed for a week already. We set off in our car at 6am sharp arriving at GOSH for 6:30am. We parked our car dead opposite the entrance before receiving our parking permit, Paul quickly moved the car to the back of the hospital and joined us in reception.

We were heading to a part of the hospital we had never been to before, nerves were eating Paul up, he remained quiet most of the morning. I felt awful as surgery just hadn't hit me yet, when would it? will it?.

We made our way up to the third floor to SDAU (Same Day Admissions Unit) and checked in. The waiting room was buzzing with life, all ages of children to babies, parents who were chatting, parents who were completely silent and parents who paid the floor with their coffees. It still hadn't hit me. Summer was in fantastic spirits, she was exciting to get into the play room.

After half an hour of sitting in the waiting room talking to some other parents, we were called in, given a gown and shown a room to be comfortable in before she headed down to theatre.

Summer was the second baby to go in for surgery that morning, she was given 10-10:30am. At 8am we tried to orally give Summer some sugar water but she wasn't keen. Gowned up, we headed to the play room at the end of the long corridor. It was very quiet for a play room, another young family in there playing quietly. Summer soon spotted a push along walker she had at home and sat happily playing with it. At dead on 10am the nurse came into the play room and shouted "Summer, they're ready for you". We followed the nurse down to theatre, I still couldn't believe I was feeling ok, Summer was cooing and balling the entire walk there. Two sets of huge heavy doors stood before us, they automatically opened as we approached. We were lead into a room met by the anaesthetist and a nurse. I was asked to sit down on a chair and hold Summer like a new born baby. We were explained to about what a general anaesthetic would consist of and how it would be given.

 

Summer laid wriggling in my arms when the word "ready" flooded the room. The anaesthetist covered Summer's nose and mouth with a rubber mask and squeezed and released part of the mask. My heart sank. This is happening. Why did it take so long for all of this to hit me? Summer laid still, softly wriggling her arms and legs. It felt like forever to work. All of a sudden, Summer fell heavy in my arms. I was asked to stand up slowly and lay her on the bed they had set up ready for her.

We were allowed to kiss her before being lead out of the room, back through the two sets of heavy automatic doors and back to collect our belongings to take up to the recovery ward where Summer will be taken after surgery.

Paul & I decided to leave the hospital, we were given a bleeper and were told to keep our phones on loud. We left our pram and four bags in a store cupboard on the ward as our bed wasn't ready yet, Paul turned to me and said "will our bags be ok in here?" I turned to him with tears in my eyes and said "they already have our most prized possession ... ".

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We arrived back in the hospital after an hour, we went for a walk and had some food to try and take our minds off of Summer being in surgery. We knew she was in the best hands however it was still hard to accept. Dr Rorison was fantastic and made us feel instantly at ease. 

After being back in the hospital for around 45minutes our bleeper went off, we headed to the reception of theatre waiting to be taken in to meet Summer in recovery. We waited patiently in the corridor as the waiting room was full with other parents. Dr Rorison met us and explained she was happy with how the procedure went and her palate was successfully closed in one surgery. We waited a further 15 minutes - which felt like 15 hours, before being led in to see her.

As we were walking through recovery, the doctor said "I know you can hear her crying but she has had pain relief she is just very confused and she will settle down when she see's you both". My eyes shot at Paul "I can't hear her".

Nothing in this whole wide world could have prepared us for meeting Summer in recovery. Everything about her was different. Thats not her cry. Thats not her mannerisms. She was screaming at the top of her lungs. I froze at the end of the bed. What the hell has happened to her.  Her mouth pouring of blood, she was kicking and punching the air continuing to scream. She had glassy eyes where the drugs were slowly wearing off, she didn't recognise me or Paul at all. She would scream for 20 seconds then fall asleep then wake up and kick and scream again. Everytime she screamed more blood would pour out of her mouth. Her entire face was covered in dry and wet blood. I could feel sick coming up into my throat. I didn't dare look Paul in the eyes or I would cry and wouldn't stop.

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Summer was wheeled up out of recovery, pushed into the lift in her bed and taken up to Panther Ward on the 6th floor. We were taken to bed 24 which was a ward of four beds. It took ages to settle Summer, she had two gown changes because they were covered in blood. I changed her into her nice clean pyjamas. She was topped up with oral morphine, paracetamol and ibuprofen. My parents came to visit that night, sent us tons of love and support along with other family members and friends. Summer fell asleep around 8:30pm so by 9pm I told Paul to come home to get some rest as it had been such a long, emotional day.

Summer had a good night, considering. She woke up around 5:30am for a feed and some pain killers then when back to sleep until 7am. Later the next day we fed Summer a whole childs yoghurt, we were so surprised to not see any come out of her nose like it did before. She loved the yoghurt so much we decided to continue feeding her. Now we can start weaning her from her feeding tube.

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Summer had an increase work of breathing when asleep. She was born with an already smaller airway and now that her cleft palate has been repaired her airway is now a lot smaller. The Dr's advised us Summer would recover possibly better in her own environment. The nurses weren't so sure and advised us to perhaps stay one more night.

Paul & I decided to take Summer home the day after her surgery. We arrived home around 6pm Friday night. We settled down for the night when we noticed Summer working harder than usual with her breathing. We settled her as best we could then fell asleep for the night. The next night was the same. Sunday 20th May in the early morning we decided to take Summer in to A&E at Barnet hospital. As soon as the Dr saw her increased work of breathing she admitted her. It had felt like 10 steps forward and 100 back. Seeing Summer struggling to breathe brought back horrible memories to when she was a newborn baby.

We were admitted for one night. A Dr come to examine her, he simply folded her like a piece of origami laying her on her side hugging a rolled towel infant of her and gently lifting her chin up to open her airway and instantly Summer's breathing improved. We were discharged after one night in Barnet hospital.

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When we come home we decided to put Summer on her sats monitor when she sleeps. Each day that goes by, Summer is thriving. Slowly getting back to usual self. Paul & I are so proud of her.

Our next challenge is to start oral feeding and weaning from her feeding tube.

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Thank you for reading Cleft Palate Repair

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  Jessica    x