The last 6 weeks have flown by. I had such a fantastic response to the blog, thank you to everyone who messaged me, it definitely helped us get our heads around what can only be described as a nightmare. So many people have been in touch to offer support and we have been in contact with people who have faced similar problems and had happy endings, so this has been a major help!
I never thought at the age of 33 I would begin to study the workings of the human heart, my head is full to the brim with medical terms and procedures. I figured the more we know the better equipped we will be when Doctors are explaining details that quite frankly, baffle me.
We went back to Oxford for a follow up scan on the 7th October, this was as we expected, no changes to baby's heart.
The offer of an amniocentesis is still hanging in the air, I must have been asked about 20 times if I want to have this. We are aware there is a higher risk that babies with heart defects may also have other chromosomal abnormalities present at birth but the way I see it is, these are the cards we have been dealt and both Alan and I will love this baby no matter what. If baby does have any other problems then we will face them when he is here, I am praying he is 'normal' apart from what we already know and so far all the signs are good, we have an estimated 1:5500 chance of him having downs, as for anything else we will just have to keep our fingers crossed.
The process to move our care to Birmingham has begun as we have bought a house there, so this stressful episode now has the purchase of a house and all that goes with that chucked in for good measure! Hopefully we should be in before Christmas so we're really looking forward to the move, it'll be a good distraction. The rooms have worked out well as the one for baby has a lovely brand new blue carpet in it!
Speaking of which, I discovered that he will also be quite blue when he is born, this completely freaked me out, BLUE!?? But having spoken to a few people this is the norm with heart problem babies, normal colour will be resumed when he is put onto the drug to keep his heart valves open and working.
Baby's due date is the 25th January and the plan so far is for me to have a c-section slightly earlier at Birmingham Womens Hospital, then Birmingham Childrens Hospital is where he will have his first operation, this will be to fix the coarctation of the aorta. We don't know how soon they will operate at this stage.
He will need to have the DORV(double outlet right ventricle) and TGA(transposition of great arteries) corrected aswell and also have the large VSD(hole in the heart) fixed, these will be done in one go or a series of op's, depending on the surgeon and also on how baby is doing.
We are seeing Dr Paul Miller on the 3rd November for another detailed heart scan at B'ham Childrens Hospital, hopefully at this appointment we can start to organise things and get a proper plan in place.
So that's where we are at right now, looking forward to Christmas with little Gracie and the prospect of a new home. There's not much else we can do other than sit tight, stay positive and wait.
Oh and decide on a name for the little chap, we have one or two in the pipeline...
