The first week
Thanks so much for all the messages of love and support that we have received. Life has certainly thrown us on a different road to the one we thought we were travelling and we are taking it day by day.
I know many of you are interested in how we are doing so thought I should write an update. Apologies if there is too much detail in here but its hard to explain simply…
Albie is a gorgeous wee boy with a very uniquely put together heart. He has what is called “transposition of the great arteries” which means that his aorta and his pulmonary artery are in the opposite places to where they should be, resulting in deoxygenated blood circulating his body, and oxygenated blood circulating his lungs(Instead of the heart pumping in a figure eight, he has two separate circuits going on).
Amazingly, Albie also has a hole in his heart. This would normally be a problem, but it has been saving Albie (along with the help of a ventilator and lots of clever drugs). The hole in the heart has inadvertedly been mixing the oxygenated and deoxygenated blood together so that oxygen levels around his body aren’t critically low.
Initially it was thought that he could have a relatively simple operation to move each artery into the correct place, sew up the hole and he would be all tickety boo as it were.
Unfortunately, Albie also has pulmonary stenosis. This means that his pulmonary valve is too small and needs total replacement. They want to do this, with the repositioning of the grand arteries, when he is more robust at around 8 kgs (approximately 6 months).
In the meantime, to see him through the next six months or so, they blew another hole in his heart yesterday to help to create higher oxygen levels and this operation seems to have worked. Next we will wean him off the ventilator and all of the drugs and see how he stabilises.
It is needless to say a terrifying time. Behind all of this medical explanation for where we are at, are two parents very much in love with their stunning wee boy – he is just gorgeous and we are looking forward to holding him which we hope we get to do tomorrow. It is quite surreal to be dealing with this journey but we are trying our best.
Starship Paediatric Intensive Care Unit is amazing and the staff there are phenomenal – he is absolutely in the right place We are also well supported in Ronald McDonald House, where we are staying. Marcus and I both see the irony in feeling some obligation to the golden arches, but this place truly is fabulous!
Please keep us in your thoughts and/or prayers
Lots of love to you all,
Sarah, Marcus and a beautiful wee Albie