Congratulations Jake on passing your driving test this afternoon with only 3 driver faults. Every lesson you always reflected on what you needed to work on to achieve your goal.
Which makes today very special having done so well. Stay safe and enjoy the independence 🎉🚗🎉
Thank you for the donation to Keepthebeat 💙♥️

I phoned the ward early to see if Flo had been a good girl overnight. She had needed a dummy which they gave her and she had settled. Once I had my obs I came down for cuddles to wait for Tom to come in. One of the nurses came to see me and told me that surgeons wanted to speak to us to gain consent for doing her operation tomorrow. I asked them to come back later because Tom wasn’t here yet. We were gutted, it was Sunday and we had only had 2 days in our newborn bubble. We both had lots of cuddles and cried about what was to come.

Florence didn’t need the surgery immediately, but a bed space had become available on CPICU (Cardiac paediatric intensive care unit), so the decision was made and Florrie was next up. The Cardiology surgeon who came to talk to us spent over an hour with us going through the surgery, benefits and risks. I remember vividly Tom and the surgeon talking about cricket, because Pakistan v India were playing in the T20 World Cup. We signed the consent paperwork because we knew we had too, even though Florence looked fine, she wasn’t, it would only be a matter of time. Throughout the pregnancy the one thing we could do to help you is make the decision for you to have surgery, it was then up to the Doctors and Florence to fight through what was coming. We both cuddled her and told her we loved her lots because there was a very real possibility it could be the last night.

That night I went sleep reminding Tom he needed to be at the hospital early because they would be taking her to theatre at 7.30. There was lots of crying and I wandered back down to the ward to see her and just give her another kiss.

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We got a phone call to say Florence was moving from Neonates to Ward 1 the Cardiac children’s ward. I went to sit with her because I wanted to be there when moved.
The Nurse and a Doctor transported Florence from floor 2 to floor 1, with a huge crash bag.
Ward 1 was a nice airy children friendly ward,she was moved from her little incubator to a child’s bed…Florence looked tiny. She had gone from being a hulk on neonates with all the premature babies to tiny in the matter of minutes. The nurses were brilliant and made her a little comfy nest to keep her feeling safe and secure and there was a lot more space in this bed for teddies. Due to the new big bed, it was so much easier to get her out of the big bed for cuddles and skin to skin and We started to do all the normal things we would do if we were at home. That night I couldn’t sleep at all, cried on the nurses because I was so terrified of what was coming.

The Prostin is a drug that mimics the hormones of being in the womb and sometimes this can make babies stop/forget to breathe, so whilst on the ward Florrie had a Sleep Apnea machine which would alarm if it had not felt a breathe after 20 seconds. So our early pictures and videos of Flo have an eerie ticking in the background!

The hardest part of the step down from Neonates was not having 1-2-1 nursing. I was still an inpatient so I couldn’t stay with Florence, she was on her own in a big bay, the nurses showed us how all the monitors connected to the monitors at the nurses desk. We were lucky that night because of the amount of patients on the ward Florrie had a 1-2-1 nurse, just because of numbers.

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I was up early, waited for the drug round then I was off! I asked one of the nurses to wheel me to the Neonatal ward so I could see Florence. She had a good night, at this point due to the Prostin, her oxygen saturations (amount of oxygen in the blood) were in the 90s. The nurse said later in the morning, when Tom got in we could get Florence out for skin to skin and cuddles. This would hopefully help my milk production as well, this was important to me, because it was some I could do for you! So I went back to my room to wait for Tom to get in.

When he did off we went back to her bedside, we got our first cuddles, i got skin to skin, I wasn’t allowed to breastfeed you but I was amazed because Florrie did the breast crawl, it was fascinating to watch. After I had cuddles Flo then went to Tom, there was such love and affection in his eyes I may have shed a tear!

It made us chuckle whilst on neonates, Florrie had bubble wrap as a blanket, because cardiac babies can suffer with low profusion to the extremities it was important for the nurses to see your hands and feet at all times. She had some little bits of fabric in there, that both me and Tom had slept with so they had our smell on them to soothe her, she also had Ollie the Octopus, the tentacles are similar to the umbilical cord and helps babies to not pull their tubes out.

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Delivery day cont.
After my recovery time, I got straight into a wheelchair to come and see you. I was so excited to come and see you, and was gutted that when we got to you there were 2 cardiologists giving you an Echo (Echocardiogram) which was an in-depth ultrasound of your heart. I just wanted to meet our baby, not be reminded of the things to come. Could we not just have this time?
After the echo, the cardiologist told us that nothing had changed and it was, as it was, antenatally which was a relief. He also said the likelihood would be she wouldn’t need to be operated on until at least middle of next week.
There was such a relief, we could have a newborn bubble over the weekend ahead of her first open heart surgery.

We sat with her for about an hour and a half, allowed to touch her in the incubator, discussing feeding with her nurse, I had proudly expressed colostrum at home…she got through it in 12 hours so we got her some formula until I had more and my milk came in. Trying to understand what everything was attached to her. She had her umbilical catheter, a cannula in her hand, NG tube, ECG leads attached to her chest and a SATs probe on her foot. One worry we had was that we wouldn’t have any pictures of her without wires, then should the worst happen we just wouldn’t have these pictures. However once you spent 2 minutes with her you forgot the wires were even there. We just couldn’t believe this little dot was ours.

Tom and Helen took me back to my room on the maternity ward, I was going to be an inpatient for 3 days, there was nowhere to stay on the neonatal ward anyway. Going back to the maternity ward was really cruel, I had a baby but she was on floor 2 when I was on floor 3. Seeing other people with their babies all happy and smiling and I had to go sleep with the sound of other people’s babies crying, it was really really hard. At around 10pm Tom and Helen went home whilst I went sleep to recover from an amazingly busy day.

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Delivery Day
When the surgeon held you over the blue curtain it was unconditional love. Your tiny hands with long fingers, your little squished cheeks. It was so nice to be able to announce to Helen that you were a little girl, Florence Georgea, born at 14:10 weighing 6lb 4oz! Then you cried and everything was amazing. You were whisked away to the nursery to be checked on. You were well enough so Helen made sure you were brought into us for cuddles before you went to the neonatal ward, Then you were gone.

I was closed up and taken to my recovery room where I had to wait for 4 hours before I could come and see you. Tom went to the neonatal ward after an hour and you had your umbilical catheter and had been started on prostin. You also had an NG tube (nasal gastro), all your food went down this, straight to your stomach, this was so you didn’t exert all your energy feeding. Tom phoned grandparents to let them know they had a grand daughter. Tom FaceTimed me from Florence’s incubator, she looked so perfect, just relaxing after her speedy recovery Earth Side.

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Unfortunately from 37 weeks I was admitted to hospital with pregnancy induced hypertension (thanks Florence!). This meant everything was a waiting game until 39 weeks! 39 weeks arrived and there were daily discussions about Baby Bennett’s arrival and whether a bed was available on CPICU or the Neonatal ward.

Then 39+4, was game day! I was taken to delivery suite, my best friend midwife was called, Tom was on his way when baby had other ideas. On the pre monitoring listening to babies heart, the heart rate dropped twice within 60 mins. The doctor came to speak to us, we had all the information we needed to make an informed decision that we would go ahead with an unplanned c section. We didn’t want to go down the induction route then need an emergency section of babies heart rate dropped further.

As I was prepped for theatre a man from the neonatal ward come to see us, because if baby was coming today, no bed was available and baby may need to be transferred to Bristol or Leeds. We were crushed, we wanted our baby to be at Leicester because the East Midlands Congenital heart centre had helped many people we know. As I was just getting ready for my spinal block, he came back and told us he had managed to sort it and we were staying in Leicester. Phew!

First spinal block didn’t take, had to have a second. Didn’t want a general anaesthetic because the baby would be whisked away and I wouldn’t see it for 4-5 hours, I wanted to make sure I was awake. Luckily second spinal block worked and they called in Tom who had been waiting outside wondering what had happened because the 15-20mins he had been told to wait turned into 50 mins.
It took 7 minutes from that point to us meeting you ❤️

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We had our final cardiac scan at around 30 weeks, and it was confirmed our baby definitely had borderline Hypoplastic left heart. We were told we would have no more scans until baby was born. For us this was a good scan, we had received no further bad news!

We were being referred to the Adam clinic where we would discuss the birth of our child, to go through the logistics of the birth and what would happen with myself and the baby in the immediate post delivery.

The Adam clinic was brilliant at putting our mind at rest in terms of what was going to happen, how and why. I would be induced at 39 weeks for a normal birth. Once baby was born they would go off to the neonatal unit to be checked over and an umbilical catheter placed so that prostin could be administered. The cardio team would come and scan the baby to check the diagnosis. Any questions we had were answered and we felt heard and felt like we were being included within the decisions. We were allowed to have delayed cord clamping and we had wanted to donate to the Anthony Nolan trust.

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🎉🎉1st Time Pass Alert 🚨 🎉🎉

Congratulations Harry on passing your driving test this afternoon @ Hinckley DTC at your 1st attempt with only 3 driver faults. It’s been a pleasure helping you achieve your goal after only 13 hours. Stay safe and enjoy your independence (and being a taxi for your Mum and Dad)

Harry raised £13 for Keepthebeat 💙♥️
#drivinglessonsnuneaton #excel_driver_training #drivinglessonshinckley #drivinglessonsburbage #safedrivingforlife

The amnio I had came back clear of chromosomal abnormalities 🥹

We had another cardiac scan at 25 weeks, we naively thought it was just to check the things we had seen last time…after the scan they put us back in the quiet room (horrible place), we then got told our baby had Hypoplastic left heart syndrome. It looked border line but would still need surgery as soon as the baby was born. We got told how the baby would need a drug called prostin immediately after birth, this was to keep the ductus arteriosus open until babies first operation. We were taken through the 3 operations to take the heart to a single ventricular function. Which was overwhelming. Our baby was only going to have half a heart. ❤️‍🩹

However,that was if the baby made it through the rest of the pregnancy and was born well enough to even have the surgery. The surgery itself is only palliative, there is not a cure for this issue. It was at this point we said how we could make the decisions we needed to, to help our baby, but baby would also need to come to the party.

It was complete information overload, learning about it through charities, relaying all this information back to family and close friends was awful for us and them. People didn’t understand and didn’t always know how to respond, especially when you mention the term Congenital Heart disease (CHD) because there is such a high sliding scale of issues encapsulated by this term.

The image shows a ‘normal’ heart by a Hypoplast left heart. With all things the degree and severity of the Hypoplasia (incomplete or underdevelopment) is unique.

Little Hearts MatterHeart LinkKeepthebeatBritish Heart Foundation Tiny Tickers “The Tiny Hearts Charity” Leicester Royal Infirmary East midlands Congenital Heart Centre

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