Day-to-day considerations


“You might want to keep one day free where you have no healthcare appointments at all,” said the lady who came over for our initial visit from Portage. That phrase really stuck with me. But it’s funny, right now I suppose all I see is our norm. and gratitidue for the care we receive.

Coraline has her Cardiology and Paediatric development appointments and in the New Year we will have her Portage visits and physiotherapy visits given the potential for lower muscle tone. Kevin and I will be taking a sign language course in the New Year in case language takes longer to develop for her and she has an assigned speech therapist to work with her in due course.

The Cardiology team at the Evelina Hospital are keen that Coraline is bigger and stronger before her operation, and that she stay healthy before she has it. It’s a fine balance for them to work out when the operation will be; and they will know more next month when they plan to do a sedated heart echo. She currently has monthly heart scans but is often moving about in them, so they would like to have a look when she is still. She has two holes in her heart and one valve (as opposed to two, so they will separate it during the operation).

Coraline’s weight has plateaued a bit over the past month. A friend who is a Biology teacher explained this to me (as did the Cardiology team at the Evelina). For Coraline, she takes in the same amount of food as a typical baby but she will be burning more of it to keep her system going due to the holes in her heart, so she puts on less weight. And giving her more food would not rectify it, as there’s an optimum volume of feed for her size and stomach. Apparently she should eat her weight in kilos x 150ml per day. Also due to lower muscle tone, she is working hard to produce her sucking reflex to drink her milk which will be using energy. She takes diuretics daily in the morning and evening to help ease pressure on her system from her heart - we use a syringe to drop them in her milk. 


One of the health visiting team makes a home visit to weigh Coraline each week (which is above and beyond what they usually do), after which the Cardiology team from the Evelina Hospital call to check on weight gain. A Dietician from the Evelina recently prescribed high calorie formula to supplement the expressed breast milk Coraline has at the moment to help her gain weight. As her Godmother said, “Haven’t we all got a high calorie diet prescribed over Christmas?” I have been exclusively pumping breast milk for her since she was born because she couldn’t latch on. She has been on this high calorie supplement since last week and has put on 200g (she has 100ml expressed breast milk, 30ml high calorie Infatrini per feed)! Yippee! We also need to keep her upright for thirty minutes after a feed so that she doesn't bring it up again as she is prone to doing that generally. I liked it when I went to the Chemist’s to pick the milk up and they said, “don’t worry, we’ll look after her”.

Beginning to smile

Beginning to smile

Walking to the Evelina for our December monthly heart scan

Walking to the Evelina for our December monthly heart scan

As regards keeping her healthy, my friend also explained that when we get ill we have reserves of energy to fight off an illness and to raise an immune response. But for Coraline she won’t have the same kind of reserves. So this is why we are doing our best to keep her healthy and well. This is why we are living our, “do you have a cold?” existence at the moment for anyone who comes over! We don’t go to group settings with Coraline, or to baby groups as we have been advised by the Cardiologist not to. It’s a carefully calibrated decision; ensure Coraline is social and stimulated but for us to do all that’s possible so that she is not exposed to risk of infection. We have noticed that she loves to meet new people and has a beautiful, endearing flicker of a smile for them.

I thought it was worth painting a picture of our lives just now. Our lovely lives. I potter about with Coraline, friends come over, I meet friends in coffee shops, we go on lots of walks and we go to various appointments for her development and health or they come to us. All the while I check to make sure everyone we are around is in good health.

So that’s our day-to-day and we find the upshot is it basically makes you more conscious of being really grateful for all the care around us (we marvel at their expertise) and for simple pleasures. It makes you adore those cosy, unfettered days choosing what you want to do when you have them. Plus you have more appreciation of considerations or appointments others may have in their day-to-day lives, once you have them in yours.

Merry Christmas from us on our high calorie diets, to you on yours!


Breastmilk, Health, TherapiesLiz