After a few days she came off the vapotherm and went back onto normal oxygen.

One evening we came up to see her for our last kiss before bed and as we walked around the corner, she had 5 people around her bed, this was never a good sign. Her heart rate had been high since she had stopped a drug called Milrinone (this lowers Blood pressure) so they were doing a 12 lead ECG, they kept talking about about ‘dropping your ‘P’ wave’, ‘junctional rhythm’, after discussions they decided actually it was a normal ‘Sinus rhythm’. It could have been something called super ventricular tachycardia which would not be a good thing, but it wasn’t.
Me and Tom were very nervous and anxious again, but they started her on oral Milrinone and she levelled back out.

We started bottle feeding her and we had to make sure she wasn’t working too hard or struggling to take the bottle.it was the first time we had been able to feed her.

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It felt like we had to take a backwards step with Flo because she had an X-ray and it showed fluid on her lungs, the doctor told us this was normal after being vented and they needed to put her on something called Vapotherm, high pressure flow of oxygen to help inflate her lungs after the fluid and collapse. She also had lots of physiotherapy and occupational therapy input to help her lung too.

There was a day when we thought you had slept too much…we decided to say something to the doctor who agreed. There was some tweaks to sedatives and you were a little more awake, we said to ourselves we would always discuss our concerns.

We got very excited when we went to register her birth at the same registry office we got married in. She also came off the last of the ‘hard’ drugs morphine, it had been weaned slowly in a good that she wouldn’t get withdrawals. She did get some withdrawals from the morphine, but she powered through. Her central arterial line came out any bloods or gases would now need to be done by heel prick. By the end of her stay on CPICU she did not like her feet being touched at all, she associated it with pain. We had to do a lot of work her after to allow us to touch her feet again.

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Halloween 🎃 Me and Tom went home for the first time, the ward was closed for the majority of the day so it helped a little. But it still made me guilt hard, I cried for a lot of the time but had cuddles with the dogs which was nice.

When we got back to the hospital Florence had her chest drains removed, to make sure everything was ok they did a chest x-ray, this revealed your right lung had deflated, we were told not to worry, it can happen when vented. We of course were very worried.

Then in quick succession we had a lot of changes, she had her catheter out which made changing her so much easier. She also had her first clothes on since she was born. It was amazing to see! Her ventilator was removed and she handled it so well for a while, then her oxygen saturations dropped and she needed to go on nasal cannula oxygen. Her peripheral cannulas in her hands removed, again this helped changing her, the dressings on her chest were removed and her scar looked amazing. We got cuddles with our Florence for the first time in 9 days, it was truly amazing!

(She finally got to wear her Halloween outfit at around 8 weeks old!)

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🎉🎉1st Time Pass Alert 🚨 🎉🎉

Congratulations Sophie on passing your driving test yesterday at the 1st attempt with only 3 driver faults. It was quite a journey for you becoming a safe driver and I’m so proud of your achievement. Stay safe and enjoy the independence 🎉🚗🎉
Sophie raised £28 for Keepthebeat 💙♥️

Florence spent 18 days on Cardiac Intensive care. Whilst she was up there she started with 14 drug pumps for various medicines. Whilst sedated Florrie was on Morphine and Ketamine. Then she was on various medicines for fluid loss (diuretics), medicines to control heart rate, medicines to infections to name a few.

When you were a week old and 3 days after surgery, Flo opened her eyes after surgery and it was amazing to see her beautiful eyes again. The nurse surprised us with making a’bumpkin’ with the ‘Bumpkin Twins’ (and bum print pumpkin), it was very surreal. Here she was 3 days post surgery, on a ventilator, on lots of meds and here we are painting your little bottom! We got to wash her properly for the first time and really felt confident helping the nurse hold you and change your bed.

I was so excited to come up to see you at 14:10 (the time you had been born the week before!), however the ward was closed for another patient so it wasn’t too be.

The day Florence’s chest was closed, Tom and our nurse had played me, Tom wanted to go play pool at a snooker hall near by which we did, we got a phone call whilst we were there to say the surgeons where going to do her chest closure. We were obviously very worried because of what happened last time. When we got back to the hospital, she looked so good with her chest closed.

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#awarenessofchd #hlhs #heartwarrior #chd #hlhs #heartmonth2023 #fighter #heartwarrior #hw #halfaheartnothalfalife #love #baby #pregnancy #scans #echo #HeartMonth #heartmonth

To those who would like to enter the Bosworth Half Marathon the tickets are available from 8pm this evening- maybe in taking part you could raise some money for Keepthebeat!??

The Keepthebeat 1 mile run will be available to enter soon- watch this space! Really looking forward to seeing old and new faces at the event- it’s been too long!💙❤️xx

The next few days were very stressful, our nurse from the day of surgery who saved Florence’s life, was with us for 4 days. This really helped with continuity and formed a strong relationship.

They kept her quite heavily sedated the first 24 hrs then they slowly started lifting the sedation. They wanted Florence to move around, this helped move the fluid in her body. She puffed up like the marshmallow man which was completely normal, just very strange to witness.

Due to her arrest they had to reopen her chest, for the first 24 hours I couldn’t look at it. Whenever they looked I couldn’t watch, Tom had been brave enough to look, but it took me a day or so. We both said that it was part of Florence’s journey and we wanted to be able to tell her all about it when she grew up and had questions.

We were told in the next few days to not think of her recovery by day, but by hour. So her nurse would explain they were going to change something and expected results by the end of the hour. This really helped to manage our expectations and helped us understand we couldn’t plan anything. Florence needed time and we would just let her get on with it.

We both said to each other a couple of days after, if more than 2 people came into the room, it was to tell us that she had died. When 3 people came in we both held our breath…but she was ok!

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Florence’s first operation is called the Norwood Procedure.
This aims of this operation are

* to improve the flow of oxygenated blood around the body by attaching the pulmonary artery to the aorta.

* to provide blood flow to the lungs via a shunt from the right ventricle to the pulmonary artery. This makes sure blood reached a the lungs to collect oxygen that flows around the body.

* to create a permanent passage between the left and right atria ensuring a mix of oxygenated blood and deoxygenated blood flows around the body.

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Surgery continued

**Trigger warning – distressing content**

I had nipped to another level of the building I was telling Tom how there was a lady running a blood transfusion to CPICU. She was in a real rush. I told Tom I was worried it was for Florence, he told me I was being stupid.

After about 20 mins of somewhat relaxing, the phone rang it was CPICU, they told us we had to come upstairs now, they couldn’t tell us why over the phone. We ran upstairs utterly terrified, Florence’s nurse came to speak to us, but we cannot remember what he said I asked if she had a blood transfusion, she had. I was gutted, what if I had delayed the blood getting to you. I have never had such guilt.
The ward sister came to speak to us, she said ‘they had got you back,’ I had to ask if she had died, she hadn’t but she had a cardiac arrest. They had to administer CPR for 18 minutes.
They had to re-open Florence’s chest and they could see that her heart was beating still, but it was dry. After what seemed like a lifetime, her nurse and the paediatric Consultant came to see us, they couldn’t tell us why she had arrested yet but they spoke us through the potential neurological implications. They informed us the surgical team would come and speak to us shortly.

We thought we had lost her.

Waiting in that quiet room was oppressive and stressful, I was pacing and fidgeting, Tom was quiet and very still. The surgical team walked in and explained it was a rare phenomenon called ‘fluid loss to the third space’ her body rejected her blood once it had been through the plastic tubes on the heart/lung bypass machine. There was no guarantee it wouldn’t happen again. How could our little Dot who was 4 days old, had open heart surgery and a cardiac arrest have been through so much in her tiny life?
Once Florence was stabilised, we were allowed to come through. It was a lot more settled around her bed now. Her nurse took us through her drugs and what they did, he explained how she had taken an entire adult bag of blood.
We sat with her for hours before finally going down to bed around midnight. We phone CPICU just before we went to sleep to check inc this became part of our nightly routine.

This was the toughest day of our entire lives, but she has proved to us she is strong and tough. We are so proud of her!

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Surgery day
**Trigger warning -distressing content**

I was up at 6am after an awful nights sleep. The ward I was on were great did my obs early and any medication so I could get to ward 1 around 6:45. Tom arrived at 7, again he had a rubbish nights sleep.

We both felt physically and violently sick, our baby who was 4 days old was going for open heart surgery. We took pictures with her, loved her and hugged her, just incase she didn’t make it through the operation. The surgeon told us yesterday that the procedure you were having called the ‘Norwood’ was the most complex surgery they could do on a babies heart.

When the time came, we had to speak to the anaesthetist and again confirm we gave consent. We walked her to theatre in her big bed and we were allowed in to the anaesthetic room, holding her hand and talking to her whilst they administered the anaesthetic to put her to sleep. We told her how much we loved her and they showed us she was on a large inflatable heated mattress that was keeping you nice and warm. Then we were escorted from the room. Once in the stairwell, we both cried so much.

We went to get all Florence’s bits from Ward 1 as we would be going to CPICU after the surgery. We had been given a parent room on Ward 1 for us to stay in which was an absolute godsend. We got a quick look around CPICU and met the Ward Sister who took us through what would be happening when she came back. The operation could take between 5-7 hours, we didn’t want to wait at the hospital so went off to Fosse park for 4 hours. After 5 and a half hours we got the call to say surgery had finished and it had gone well. We headed to CPICU to meet with the surgeon.

We spoke to the surgeon who said that surgery had gone well. We were told to expect Florence to come back from theatre with an open chest, but the surgeon said that she had tolerated the operation so well, they had managed to close the chest in theatre. He was so pumped it was infectious, we both looked at each other and said we were not going to get too hyped. We were so relieved that Florence had made it through the surgery and that it had gone well. We then had to wait to go and see her, whilst they settled her in. The ward was closed whilst she was admitted and no other parents were on the ward. We phoned the grandparents whilst we waited to come in.

Florence’s nurse came to get us because we could go and see her. There was a lot of nurses around Florries bed space all hustling and bustling. She had 3 chest drains and they kept doing something called ‘stripping the drains’ it reminded me of curling Christmas ribbon. It was very intense, so after a while we went to our parents room for 30 mins before coming back up to CPICU.

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