Tillie's journey begins. 

Saturday 13th October 2018, Tillie had a hospital appointment today, to have her heart scanned as requested by A&E when she when she was diagnosed with Henoch-Schönlein purpura (HSP) . We thought it was going to be just a routine check up on her heart murmur as requested. Unfortunately this wasn't the case. Tillie has a large secundum atrial septal defect measuring 18mm and the right side of her heart is overloaded. This means Tillie has a hole in her heart between the top two chambers so oxygenated blood is mixing with non oxygenated blood causing her right side to suffer. 

We had an appointment on the 4th Dec at the Jenny Lind  with a doctor from Great Ormond Street Hospital, to see what he thinks and what are options are. He decided the hole was too big and complicated to close through key hole surgery and Tillie will be receiving open heart surgery. 

Tillie will be receiving heart open surgery in March 2019.

UPDATE: 

Tillie has received her date for open heart surgery. It'll be on Wednesday 13th March at 7.30am, on Walrus ward, Great Ormond Street. We'll need to visit Walrus ward on Tuesday 12th March for pre-surgery blood tests and consent forms.

UPDATE: 

Tillie has unfortunately had her operation cancelled due to the amount of babies being born last month who require their operations first. (Monday 11th March)

UPDATE: 

New operation date is set, Thursday 21st March, with pre-surgery bloods on Wednesday 20th March.

UPDATE: 

Cancelled again.

UPDATE: 

New operation date has arrived, its on Wednesday 3rd April, with pre-surgery bloods on Tuesday 2nd April.

UPDATE: Tuesday 2nd April 2019

We have travelled to London on the train for Tillie's pre-surgery bloods. She was super brave having her bloods done. While there she had students who also came in on training to listen to her heart and practice asking questions. She took this all in her stride. 

This evening we have gone got for a dinner treat, Tillie's choice. She chose to go to Pizza Express. Then back to our hotel accommodation for an early night, ready for our early morning. 

UPDATE: Wednesday 3rd April 2019

Operation day has arrived.... 

Its hard to imagine we have only been here twelve hours and what Tillie has gone through and coped so well with. 

This morning we arrived at 7.30am on Walrus ward. Where she got ready for surgery. She wasn't keen on the teddy bear gown she had to wear, but loved having an interactive TV by the bed to play on. She had extra special Enzo snuggles and shared her bed with him. 

They were already for her to go down to surgery at 8am. I kissed my baby girl goodbye, as she went with the nurses and daddy. She choose banana and blueberry flavoured gas to go sleep. Daddy joined us and we left the hospital as instructed. It felt very strange to leave her behind but we had been given a breakfast voucher to use and visited the park by the hospital with Enzo. 

At 1245 we recieved the call to say we could go to intensive care unit at 1pm to see her, her heart surgery had gone well. 

We were warned before we went in, on what to expect. Seeing her lie there helpless was very difficult. She kept coming round and going back out. They had to wait till her stats to be at a certain point before removing the breathing tubes. This felt like forever. 

We stayed in icu before being moved to the high dependency ward on Bear Ward for the night... 

Once settled into to ward, at 10pm we had to kiss her goodnight and leave. We were staying in Sick Children's Trust accommodation, where we have phoned linked to the ward she was on. They would call if any changes and we could call at anytime if we needed reassurance. 

We are super proud at how amazingly strong she is...

UPDATE: Thursday 4th April 2019. 

Daddy arrived back on the ard for 6am, when we were allowed to return so she wasn't alone. Enzo and I followed shortly after at 8am. She was so happy to have her partner in crime back by her side. The nurses commented on such a strong bond they have. 

Today has been a big achievement day. Tillie has had her drains removed and has had stitches put in. She found this very difficult and painful as her gown had got caught on one of the tubes. She was then taken off the. morphine. Which meant she could started eating. To encourage her to want to eat she could order her favourite meal and they would make it specially for her. Tillie chooses a stir fry. 

Now her tubes have been removed, she amazingly been up walking around and couldn't resist a  visit to the playroom and sensory room. She is pleased to be able to put on her own clothes, but found it very difficult to see her scar and wouldn't look in a mirror as it's horrible and not her anymore. This was hard to see how upset she was. 

While being in her bed, she has had lots of visitors from different dressed up characters and support workers. Though Tillie hasn't been up to it when they did there rounds in the morning. But there moto is smile and its about making every child smile at a difficult time. She has enjoyed being able to watch multiple episodes of operational ouch from her bed. 

It was harder saying good night to Tillie tonight, as she is now aware of everything and everyone around her. 

UPDATE: Friday 5th April 2019. 

Last night Tillie found it a bit harder, and the nurses sat with and took her for a walk around the ward and to the playroom. 

When arriving at the hospital we were given the news, thtlat we would be going home today. We found this to be a great shock, she has only just surgery. But she has go through each stage of recovery with flying colours. That the best thing for Tillie is to go home and have her own comforts. This way. She. Would be more relaxed and would find eating and sleeping more easily. 

Good bye Great Ormond Street... Time to travel home. Time for mummy to set alarms and become a nurse remembering to wake her for her medication every 4hours through the night. It's hard to imagine she only had her operation on Wednesday.

We travelled to the train station by a taxi, and trained home. We also got a taxi home from Norwich train station. We had a lovely taxi driver on the way home who we explained to that he d need to take care over speed bumps and explained where we had been. When arriving home he gave Tillie and Enzo a pound each to treat themselves to a bag of sweet each, and told Tillie she was a fighter. 

UPDATE: Monday 8th April 2019. 

A positive day visiting the hospital ... We got to see on the scans how Tillie's heart is working correctly. She has no fluid or infection and we can start to reduce her medication.

UPDATE: 13th May 2019. 

Today we visited Tillie's class mates at  school. They all sat on the carpet when we arrived and they gave her a lovely booklet/card of pictures everyone had drawn her. They asked her lots of questions and the class had free play for the afternoon. We spent two hours there, and she beamed the whole time and didn't want to go home.

UPDATE: Tuesday 21st May 2019. 

Today Tillie has had her follow up at the nnu hospital and has been given the news she has waited for. She is allowed to go back to dancing on restrictions. She has to wait a bit longer until end of July for gymnastics and acro. She wasn't best impressed but happy to be able to dance again. I'm so proud of how far she has come.

 She has been so scared of her scar and what people would think and now she is proud and doesn't care. ( I hope she keeps this positive attitude.) Super girl with super powers. 

NO MORE APPOINTMENTS UNTIL NEXT YEAR

UPDATE:Thursday 23rd May 2019. 

First day back doing what she loves best... DANCING. She may not of been able to join in it all but came home with a sticker and beaming. 

UPDATE: Saturday 14th September 2019

 Tillie was struggling to breathe, daddy and his friend took her to a&e. She was holding her chest, but still in Tillie's fashion telling us she is fine.... How very wrong but she never likes to make a fuss. 

On arrival her heart rate was high too. She had to have ECGS, echos, xrays and bloods. They still weren't sure what was wrong with her. Her breathing settled still slightly higher than normal but not a caused of concern. Except her heart rate was still too high and not reducing. She was transferred to Jenny Lind department, were they got in contact with Great Ormond Street. They found out an infection had developed around her heart. (Which usually happens within the first 6 weeks but our Tillie does like to be different.) They decided to keep her in for monitoring and daddy stayed with her. 

UPDATE: Sunday 15th September 2019.

This has be the hardest day ever.. 

Tillie was moved from the Jenny Lind department to another area of the hospital and was given her own room. 

Enzo and I stayed with her while daddy went and got showered and changed. 

Once speny had left, a nurse came in and told me, in 15mins Tillie would be put in an ambulance and taken to Great Ormand Street. I struggled to get back in contact with Spencer but they did agree they would wait for him but he need to be quick. 

Within minutes of Spencer returning they left. I'll never forget the ambulance doors closing, and waving good bye to Tillie and daddy. Having no control or knowing what is happening or when I would get to see them both again. The ambulance went on blues and toos to Great Ormond Street, for them to observe her, and find out what was happening. 

On arrival they assessed Tillie and said she would require first thing in the morning to remove the fluid around her heart and they will be observing her through the night, making sure there were no changes. 

UPDATE: Monday 16th September 2019. 

Tillie has been on no food and drink today in preparation for surgery. She went for surgery today at 4pm. She has had drains put in around her heart to remove excess fluid, and to make sure there is no further build up. Surgery took about an hour. During surgery, they removed 150mls of fluid.

I cant wait to be able to see her tomorrow. I know she is in safe hands with daddy and the amazing nurses and doctors on bear ward. We have talked on face time and cant wait to give her a cuddle. 

UPDATE: Tuesday 17th September 2019. 

I have been to see my baby girl and told her how proud I am of her and how much I love her. We took her a bag of goodies and things she had requested to have. 

Since having her drains put in Tillie has lost a further 150mls of fluid, in total that's 300mls of fluid. The fluid from surgery has been tested and its part of the common cold virus.

Tillie has been enjoying visits to the playroom and sensory room told. We have even had playdoh to play with in bed. Tillie asked for plaits in her hair as it hadn't been brushed since Friday morning before school. 

UPDATE: Wednesday 18th September 2019. 

No more fluid has drained over night. She has had her drains and cannula removed, and now a waiting game to see if any fluid returns. 

Daddy and Tillie have been having fun together. Daddy has been treating her to smoothies and an almond crossiant for breakfast. 

UPDATE: Thursday 19th September 2019.

Time to travel back to London to pick up my baby girl and her daddy. All her tests and check ups this morning have come back clear. We have been given four lots of medication to continue taking, while she continues her recovery at home. 

Before heading home, Tillie didn't want to miss out on the fun and celebrations within the hospital. There was a GOSH street party put on for the patients. Where the road had been closed. There were mini races, face painting, activities, horses, emergency vicheals you could go in. 

UPDATE: 1st October 2019. 

Tillie has had her hospital check up and has the standard 1.2mls of fluid surrounding her heart, not the 300mls she had. We can start reducing her medication from today and in 4 days time, she will be completely off them.

UPDATE: Tuesday 15th October 2019. 

Tillie has had her check up today since being med free after her relapse. she has passed with flying colours, and no more appointments till April 2020. 

Super proud of my girly and her positive attitude towards life. She has changed so much in a short length of time.

UPDATE: 

Due to covid 19, Tillie never recieved her appointment in April. This was rescheduled to August 2020. 

This appointment also never happened. She was seen in November 2020. Tillie's heart is now healthy and working correctly. She recieved the news that she would not need to be seen for the next three years. (November 2023.)

All my events where I can choose my charity it will be for Great Ormond Street Children's Hospital. To say thank you to them for thier support. 

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