One of the hardest things we have found on this journey, is quite literally the monotonous journey into the hospital, followed by 30-40mins of trying to park then the walk from the car park to Florence’s bedside. Having nearly an hour taken out of your day that you should be with your daughter is ridiculous. Do that daily for nearly 100 days…it gets old! It’s crazy to think how much this simple act can actually affect your mental health. Everyday is ground hog day, we get up, sort the dogs, travel to the hospital, send the day with Florence, travel home, realised we have no food in the house, go Morrisons, cook, eat, feed dogs, sleep…repeat, every day.

Spending the day with Florence is the best bit of the day, if she’s happy and smiley then it’s wonderful, some days she’s not and if that is her desaturating her oxygen that means monitors going off, or if as she is at the moment she’s a grumpy because she’s teething…this journey can become all consuming.

Me and Tom are very lucky we have such a strong relationship that we talk a lot about how we are feeling. If we didn’t it would be a completely different outcome, from such an intense and traumatic experience.

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🎉🎉1st Time Pass Alert 🚨 🎉🎉

Congratulations Archie on passing your driving test this morning with only 2 faults. I can’t describe how incredibly proud I am of helping you in this achievement after everything you’ve been through in the last few months. You took to driving from day one and the result is truly befitting. I know you’ll stay safe and enjoy your independence 🎉🚗🎉👏🏼👏🏼🥳
Archie raised £45 for Keepthebeat during his lessons 💙♥️

🎉🎉Zero Fault Pass Alert 🚨 🎉🎉
Congratulations Sam on passing your driving test yesterday with the perfect drive. All the hard work you’ve put in with Aiden has really paid off. Stay safe and enjoy the independence 🎉🚗🎉
Sam raised £16 for Keepthebeat during his lessons 💙♥️

During this hospital stay Florence has required a CT scan to check her respiratory pathways ahead of her next surgery, also an MRI scan. Both these required sedation…it turns out Florrie doesn’t understand sedation and was not sedated at all. Next time she may have to have the harder sedation!

We have had hard days with little Miss, Christmas Day being one. Her formula had been changed and she spent the entire day desaturating after her feeds. There almost seemed to be more pressure on the day because it was Christmas Day. We spent all day at the hospital with Flo and the hospital tried to make the day as nice as possible. But it was an entire day of bongs on the monitors and it was just an entirely draining day. We both left utterly broken and deflated.

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We were told at our antenatal diagnosis that some babies do not go home between their Norwood and Glenn surgeries. They are not stable enough to go home. It seemed Florence would be in this category.

Florence is currently 18 weeks old, she has been home for around a week and has spent the rest in hospital. This takes it out of you, mentally, physically and emotionally. This stay we were readmitted on the 1st of December and we are still in hospital. After about 2 weeks into this stay I had my covid and flu vaccine and it knocked me off my feet. I decided the best place for me was to go home that night. I had a decent nights sleep and woke up feeling like a human again. The nurses and everyone had been encouraging me to go home at night but I hadn’t wanted to. We were told that this was likely to be a long hospital stint. So from then I’ve decided to go home at night. We have a routine of calling the ward to make sure Florrie is ok, and we can phone them whenever we feel we want too. It is so hard leaving her at the hospital every night. Especially now she is more interactive, we get in early and spend the day with her. But also have to balance us, living in the hospital like a second home is hard. It’s draining. Emotionally, mentally, physically we are exhausted.

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Start of December on the home monitoring we noticed Florence’s oxygen saturations had dropped. Her acceptable limits are 75-85%, we noticed 73%,71% then 70%. We spoke to our specialist nurse who told us to come in. We were staying at least a night so Tom left us to go and get clothes for me. Whilst he had gone Florence went down hill very fast. She started crying and didn’t stop for nearly an hour if not more. Her oxygen saturation dropped to 50% and she went blue, they struggled to get her back into her normal range and had to use high pressure oxygen, oxygen mask and a bag. We were sent back up to CPICU for the night for her to stabilise. They did an echocardiogram and noticed her right (only) ventricle function was impaired and her tricuspid valve was regurgitating and leaking. They put her on High pressure oxygen (Vapotherm) and she had an NG tube passed again.

She basically was struggling to survive, any calories she took in, she was expending trying to stay alive and she couldn’t put on weight. Weight is a direct correlation to Cardiac function. They said her numbers for heart failure were higher than they wanted them to be too. It chucked me and Tom right back to worry and anxiety.

We were told by the cardiologists and doctors, if we hadn’t been in hospital when she dropped her saturations like this, she probably would not be here today.

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🎉🎉1st Time Pass Alert 🚨 🎉🎉

Congratulations Callum on passing your test this morning at the 1st attempt with only 1 driver fault. It’s been a pleasure helping you achieve your goal in only 24 hours of lessons. Stay safe and enjoy the independence 🎉🚗🎉
Callum raised £24 for Keepthebeat 💙♥️
#drivinglessonsnuneaton #excel_driver_training #drivinglessonshinckley #drivinglessonsburbage #safedrivingforlife #automaticdrivinglessons

We ended up back in hospital after a few days because you were not putting on weight and you not settling on the SMA high energy formula you were on. So we spent another 5 days in hospital whilst they changed you to Aptamil Pepti Junior and breastfeeding and you settled beautifully so we were allowed home. I stayed with her every night due to breastfeeding her.

Formula has been a constant issue with Florence the SMA high energy didn’t agree with her. Then when she still wasn’t putting on weight they tried Infatrini another high energy and again it was not right for her. They both made her desaturate really badly.

So she is now on a mix of Breastmilk and formula, with potential to look at allergy testing in the future.

This stay was hard, me and Tom alternated who stayed with her, but then I was allowed to try breastfeeding Florence took to it like a duck to water so then I became the staying parent. We did not like being back on the monitors as it made us constantly watch again. In this stay we were allowed time off the monitors and this meant we could go for walks in the fresh air with her.

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We were taken through the home monitoring system we needed before we could go home. This comprised of scales for daily weight and an oxygen saturation monitor. We would have to do this daily. The discussion with the cardiac specialist nurse really brought home the severity of the period of going home. The interstage is the most critical part of the Norwood surgery. It has a high mortality rate because signs can be missed.

I went home to sleep in our own bed for the first time in 5 weeks, I was so anxious and nervous but I knew tom was with Florence and that he would phone to check in and we would chat.

Finally after 29 days of you being born we had our lifesaving course and we could take you home! We took you outside for the first time and it was a really beautiful and special moment for us all. We got you home and introduced you to Hobbs and Murron and we had our first nigh as a family of 3.

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It was Toms birthday and I had tried to put things into place to make it a nice day…it wasn’t! I had organised to have Flo’s feet painted and printed for his card which was amazing. Florrie had some desaturating after taking her bottles which concerned the nurse, you may have had some reflux acid.
I took Tom out for birthday breakfast, when we came back we were told we were being stepped down to the ward, in 5 minutes. This wasn’t because Florence was ready but because there was a child who needed the intensive care bed and Florence was the least critical. We were both very angry, confused and anxious. The one thing we had always told nurses we were anxious about was the step down to the ward because again you go from 1–2-1 care to a ward. We still had our parent room so we decided to turn this into a positive. I was going to stay with Florence for the first night then we would switch each night. We had the nurses there if we needed help with anything and it was really good.

Florence spent 8 days on ward 1, on our second night we lost our parent room and ended up staying at a hotel close by, it was the best nights sleep we had in weeks, the nurses encouraged us to go home and rest but home felt too far. We went to bed and had a cup of tea and biscuits in bed, it felt naughty and we felt guilty…

One day whilst on the ward, me and Tom went for a walk and when we came back to meet Auntie Jessie and the building was surrounded by fire engines. There had been a chemical leak and we were not allowed in, we had to keep phoning to check whether or not you were being evacuated.

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