Evelina’s CCTGA journey

30/01/2023

She does love a cuddle with her brother 🥹
Today she’s been put in folic acid and iron after being tested for anaemia.. not to say she doesn’t like to take any of it 😳

08/01/2023

We’ve been quite happy over the festive period and we were waiting the final notes after we seen her cardiologist in December who assured us that nothing has changed in her condition and that we should still play the “wait and see “ game that all parents are used with in CCTGA condition. The letter with her notes arrived yesterday and I was surprised to see that many things mentioned in there, haven’t been discussed at the appointment. Now I find myself with many questions and I have to use the not so “holly” Google again until we see the cardiologist in 3 months time. She seems to have 2 jets in her tricuspid valve regurgitation (she used to have 1) and she has a propensity to develop heart block.
Meanwhile I have requested to change her medication from captopril to enalapril to reduce the frequency and amount she takes, because she started to be cheeky and spit it out.

08/12/2022

Not long time ago I did a drawing with how Evelina’s heart is looking in my interpretation.. I thought it would be a special gesture by giving the picture to her cardiologist and see it in Dolphin Ward

03/12/2022

This 2 books have been given to me by one of my work colleague, after reading them to my 5 y daughter she understood what Evelina has and why she has a scar on her chest. She is now repeatedly asking me to read these books to her. Is melting my heart to see her caring so much for her little sister ♥️

❤️

30/11/2022

After a complaint and some noise in the background we have been moved back under the care of our usual cardiologist. We are waiting to see him in 3 weeks time and plan the next step. I have requested a second opinion from Birmingham and Boston, hopping for our cardiologist to take action.
Meanwhile we battle the weight gain, which is not great and is raising concerns - she is 1 year old and 7. 53 kg

08/11/2022

Today Evelina had her cardiology appointment, nothing changed with her ♥️ condition - her left atrium is still severely enlarged, VSD hasn’t changed in size and her tricuspid valve still leaks moderately to severe this has put our mind at ease.
The big surprise was to see that we have been transferred to a new cardiologist without prior notice. This has cause frustration and anger because such a complex CHD can’t be passed from one to another without parents consent.
We are waiting to hear back on our transfer and will keep you posted.

04/11/2022

Today Evelina had her 3rd palivizumab injection which is given to prevent serious disease caused by RSV. 4 more injections to follow

30/10/2022

We are over chickenpox.. does anyone wants an ice cream?

22/10/2022

Happy Chickenpox 🙃

19/10/2022

We were ’lucky’ enough to get chickenpox 😭

16/10/2022

They say “one apple a day keeps the doctor away” 🤭

14/10/2022

12/10/2022

Half size twin 🙈🤭

09/10/2022

Still a bit puffy, but it’s feeling great to be at home after 16 days in hospital 🫣

07/10/2022

07/10/2022

After 13 days in NICU Evelina is in the ward. She has lost 1kg and we are now kept in the hospital until she is gaining the lost weight. She has to work on regaining some of her milestones that were lost due to the surgery and her recovery

04/10/2022

She is now on high risk protocol with her milk which means she can have 10ml milk every 3h. The good news is that she is reducing the time on CPAP and slowly transitioning to air flow only