We still joined swimming classes, baby sensory and baby massage but looking back we missed more sessions than we attended. She missed out on splashing, singing, playing and mixing with her peers because she needed an ECG, change in heart medication, visit from community nurse, speech therapy, physio, paediatrician appointment, blood test, ECHO, play therapist, dietician, GP, feeding company delivery, eye test, hearing tests, ENT appointment, a stay in hospital. We knew these appointments were necessary but at the same time I wanted her to experience all the things I had imagined I would do with her before she had arrived.
She is now 2 years post surgery and structurally her heart is good – her holes were successfully closed, blood flow is good and her valves work as they should. However, the ECG done as part of her check-up showed a slight slowing in the electrical pathway in her heart (known as 1st degree heart block – relatively common following the repair surgery Ella had).
A 30 second ECG is only a snapshot of what the heart is doing so a 24hr recording of her heart was needed (24hr ECG) to see what is going on over a longer period of time. She had the wires and recorder attached this week (they didn’t bother her too much – apart from removing the ECG stickers….) and we now await for the tape to be analysed by her cardiac team…
Ella takes these things all in her stride although she is becoming more aware of what’s going on. Mr Tumble DVD was required to keep her occupied and distracted during the ECHO this time and keeping her still for the ECG was also a challenge.
We hope to get the results soon and if all is well the letter for her 2014 ‘heart MOT’ has already arrived in the post!