Avas Heart op- RMcD&GCHC sponsored shave 24th Nov

My name is Charlotte and I’m the proud mum of Finlay and Ava-Rose.

On the 24th November Finlay and Avas dad is shaving his beard off for the first time in over 5 years to raise money for the Ronald McDonald house in Glasgow and Glasgow Childrens hospital Charity. I want to tell you a bit about why we are raising these funds for these charities and a bit more about these charities.

Our first charity is the Glasgow’s Ronald McDonald House. We choose this charity as this is the place that we called our home for Ava’s hospital stay and was definitely a home away from home. As a parent staying you can be there as long as your child is in hospital. You pay a £25 deposit when arriving. You can either collect this when you come to leave or choose to donate it back to the house. This house alone welcomes around 500 family’s a year in efforts to keep families together and close to their poorly little one. They are a small independent charity who receives no government funding. Even the donation boxes at McDonald doesn’t go to them sadly so it’s up to them and the general public to keep this amazing house open which costs in the region of £880,000 a year to run and gifts over 11,000 nights of accommodation to families.

Our second charity is Glasgow children’s hospital charity. This charity is also completely reliant on donations and the publics help to keep going. They provide life changing equipment, support services and research at Glasgow children’s hospital. This charity helps 520 children every day. Since the charity started in 2001 they have managed to raise £41 million to help seriously ill children. This charity obviously provides medical equipment for these seriously ill children but also provides things to keep them entertained and comfortable during their hospital stay.

Now to get on to Avas story!

On the 25th June we welcomed our beautiful baby girl Ava-Rose into the world and to us she is perfect and always has been. But little did we know she had a big fight ahead.

When I first heard about defects like CHDs (congenital heart defects) I thought no it would never be us. You never want to imagine your child being sick or in pain in anyway especially as a tiny defenceless newborn.

It was the 4th July. We had a nice weekend at home and Ava had met some more family members that she hadn’t yet met. Ever since birth we had been able to hear her breath it was like snoring and she just sounded bunged up. So I spoke to the midwife who checked her heart rate and reps per minute both of which were high so she called the hospital and they said they wanted us up straight away so they sent an ambulance down and they turned on the blue lights and sirens and rushed us into the hospital. When we got there Avas heart rate was 230 beats per minute on the monitor at points but was normally sitting above what they would like for a baby her age and her breathes per minute were double what they should have been. They did tests like bloods, X-rays and general examinations to work out what was wrong.

The X-rays came back showing white shadows on the lungs so just incase they started her on IV antibiotics as they first suspected a chest infection/pneumonia. She must have had 4/5 IVs at least during this hospital stay and it took 12 attempts at one point to get one in. During a normal examination the doctor looked at me and went I think she has a heart murmur. This was on the 5th July lunch/afternoon. They told me it couldn’t wait till the next clinic at our local hospital so they would take me to Glasgow the next day as they managed to squeeze me into a clinic up there. As she was now coming up 11 days and still wasn’t back to birth weight yet, she was always sweaty, always sleepy, even during feeds would fall asleep half way through.

On the 6th July I got into an ambulance and travelled up to Glasgow. Where she was diagnosed with a large VSD, DORV. Which we were told would require open heart surgery in the very near future. They told us right now she needed to gain weight and get to 5kg but she was still losing weight. So she eventually went from bottles and her feeding tube to eventually just her feeding tube and feeding pump 24hours a day. Eventually at her next check up in Glasgow on the 18th August. They told us we were to prepare for surgery in the next 4/6 weeks because she was getting worse. So we waited for her op date to come which was the 6th October. Her surgery was a success but the hole was much bigger than expected and she had a lot more blood in her lungs too but surgery went really well.

We left Ava in the room with the anaesthesia team at 9.23am and after what felt like the longest day of our lives we finally saw our baby girl again at 6.03pm. She was surrounded by machines and medications keeping her comfortable and asleep. She was sedated, on a ventilator, fluids, 6 different medications, IV lines and all these other wires and monitors attached to her. We knew it was all there for a reason but it didn’t make it any easier. Within a few days she was doing amazing after a few bumps in the road she had everything out minus oxygen which she moved onto the ward with on the 10th October. Even the oxygen was off by the 13th October. Then on the 14th October we got to take our baby girl home all ready for bedtime at home. She has done amazingly and no one expected her to recover so well and be out of the hospital so soon but we are so grateful in every way.