In the early days, when Ella was a baby there were lots of appointments. So many in fact that it was impossible to plan the weeks activities. In those first few months Ella spent more time in hospital waiting rooms, clinics and therapy sessions rather than doing fun stuff. Excitement and happiness at being new parents was for the most part overshadowed by worry and stress. Since having Lucy I have realised how medicalised Ella’s first few months were.
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.
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.
At the time I couldn’t see past the constant wall of appointments – it seemed like this was going to be her life forever. As quickly as you could tick off a check-up or test, another appointment letter or two had landed on the doormat. However, I am pleased to say that as time went on, things began to improve and my calendar finally had more social events in it than pending hospital/home visits (especially post her heart surgery, which was the major turning point for her health wise). She now sees the paediatrician, cardiologist and ENT yearly. Eyes and ears are tested more regularly and speech therapy is currently fortnightly.
Last week she had her yearly heart check-up. Always a worrying appointment to attend even though we know she is well and there are no outward signs that her heart is not functioning well. It’s definitely the check-up that causes me the most anxiety.
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).
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!
Amy Dunn
Our first baby, Ella Mary, was born at the end of November 2010. We were shocked to find out soon after her birth that she has Down's Syndrome. I was determined from the start that Down's Syndrome will never define Ella or what she is able to do. We will provide for her everything she needs to become the child and the person she deserves to be. There will be hard times ahead.... there are already many hard times behind us. But I already know that the good times will always outweigh the hard times. She has taught me so much in such a short time and seeing life from a new perspective is a privilege that not many of us get the chance to experience.
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