How else to put it but to say you feel your energy (even if it’s already happy and great) lift that notch higher from just a moment spent with him!
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Dressed for the occasion. All went well at Coraline’s Cardiology appointment yesterday.
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“I feel privileged to have met you as your experience has reminded me to watch out for judgmental moments.“
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Meeting him in our first week in hospital had the biggest impact on me due to his relaxedness, wisdom and positivity, which he simply exudes with his presence
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Coraline had her monthly Cardiology check on Monday - they said the top atrial hole has closed itself and the bottom ventricular hole has almost sealed due to tissue growing around it; there's just a mm gap.
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Baby echocardiogram: Coraline was amazing today for her sedated heart echo at the Evelina. She didn’t have food for seven hours and was so well behaved.
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Yesterday we noticed Coraline, our baby with Down’s syndrome, was having problems feeding. She was drinking less expressed breastmilk and taking longer to do so.
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We found ourselves telling the Irish midwife who came to our house on our first day home from hospital with Coraline all about this. She said, "well that encounter was meant to happen".
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We also liked it when they said, "she's cute; we see a lot of babies but she's really cute".
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Our daughter has two holes in the heart, a condition known as Atrioventricular Septal Defect (AVSD) which can be common in children with Down's Syndrome.
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We read one on "Self-Knowledge"; "The hidden well-spring of your soul must needs rise and run murmuring to the sea; And the treasure of your infinite depths would be revealed to your eyes".
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We had read before we had Coraline about how it's great and reassuring for a baby if you talk them through what you're doing and what's happening. So that's what we have done since she was born.
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We try to do ten gratitudes in the morning, and at the end of the day look back over all the things we are grateful for which happened in the day and choose the top one. It's amazing how this just flips you into a mindset with a glow for the day.
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So to the moment, the wonderful moment, when I met Coraline's Consultant Paediatrician together with Kevin (who had already met him). He smiles when he talks, so you smile when you listen. I told him, "I could listen to you all day".
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The nurses from the ICU, so taken with Kev's energy and devotion visiting and being with her, found a bed they had and wheeled it to our room for him (dads normally sleep in a chair).
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Our baby was born by caesarean as her growth rate had slowed. She was diagnosed with Down’s syndrome at birth. We had amazing care from the midwives.
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We began to learn that sometimes it is difficult for babies with Down’s syndrome to breastfeed as they can have difficulties latching on.
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Our baby had a little scrap of blanket with her in the ICU and meanwhile I had a matching one. These were swapped between us so that she had my scent with her.
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"My respect for him has always been high but now it's stratospheric. He's set the tone for us all. You've got a treasure there. He's just the right mix of quick witted and immensely practical".
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