Dealing with it

The day after

Its a Saturday, we didn't have a good sleep. Been up most the night trying to get our heads around the news. Started the day as normal as we could for our girls, we aren't going to tell them until we know more about it and figure out how to do it. How do you tell your daughters that their baby brother is sick and might not make it?
So breakfast was done, we tided up a bit as Stuarts mum and dad where coming down to see us. Got us and the girls washed and dressed, then Stuart went to get his mum and dad. Once they were in and settled with a cuppa we talked about things, as there is family history with Chd and they have been threw it before they knew where we should start. We talked for hours, and before we knew it, it was dinner time and they had to go. After they left Edith our heart nurse rang me. She asked how did our night go and had we told family. I didn't really know what to ask her as we had all this information and didn't know what it meant. So she said to read a booklet she gave me on Hlhs and to write down anything i wanted to ask for next time she rang, as she would ring for a few weeks to make sure we had everything we needed to know before we seen Dr Sands again. The staff have been very good with us. Edith said anytime i need to talk to ring her even if it was just to make myself feel a bit better, I'm so grateful for them as i don't know what we would have done if they weren't as good as they have been. Any questions we have had they have answered, even if we have asked it 100 times, because any parent knows you can never have silly questions when it comes to your child's health.

Getting on 

So now that we have a complicated pregnancy i have had to change hospitals, as the last one was a low risk and i obviously cant go there no more. So i got a booking appointment for the 27th June and have just seen a Dr Ong who done a growth scan on the little man, as heart babies can have trouble growing due to their heart. He was a very nice man, sat us down went threw our notes and said that he doesn't deal in the heart he just does growth. So i got on the chair, lay down and there our wee man was, in all his glory (yes he was flashing). The scan lasted only a few minutes and Dr Ong was happy with his weight. He was already weighing 2lb which was good for how far i was. We left the hospital with good news and it felt as if we would never have good news again, only a few days before hand we had our bad news and felt as if we'd never get over it but we realised that our man is a fighter and he can do it and we can do it too as we have our family's and each other to get us threw.
My friend Sarah helped me as well to understand the workings of the heart and what the written report meant as there are so meny official words its like trying to read a dictionary to a 6 year old. I had no clue. So it was time to read up on the operation he has to have in Birmingham children's hospital as in Northern Ireland there is no specialist Dr's that can do the operation. His operation is called the Norwood procedure, there are 3 stages of this. Stage 1 he will have at only a few days old. It converts the right ventricle into the main ventricle, pumping blood to both lungs and body. This is because his left side is under developed that's why his condition is called Hypo-plastic Left Heart Syndrome. The main pulmonary artery is cut off from the two branching pulmonary arteries that direct blood to each side of the lungs. Instead a connection called a shunt is placed between the pulmonary arteries and the aorta to supply blood to the lungs. So basically they have to rewire his heart so it can supply oxygenated blood and can work with only the right side working for both right and left ventricle. The 2nd stage is called the Glen operation which he should have around 4-8 months old and the 3rd is the Fontan operation which he should be around 3-4 years old for that one. Depending on how well his heart copes the ages can vary between children.