It’s been a while since I have shared, I feel like for me this post has been the hardest part.
Firstly… IT’S A GIRL! Of course she is a girl, causing us little dramas already (takes after her Mumma) - ask my parents! We had a gender reveal that we shared with some close family & friends which was really special. I’ve never been one for big events and jumping onto what everyone else is doing, but it was a small get together in our home and it was a special moment to share as we all found out at the same time the sex of our babe. So I can now say SHE and we are both over the moon we are expecting a girl.
Secondly, I touched base on an earlier post that our Harmony Test appointment had picked up a possible heart defect. We had this confirmed at 21 weeks with a trip to a cardiologist at Kings College Hospital which we had been referred to. Although I expected it and knew that she has a heart defect, there was something about having that confirmed I found and still find incredibly difficult to come to terms with. My pregnancy has been a very healthy one and I have been lucky to enjoy it as much as I possibly can, but it hasn’t been easy emotion wise.
Being a first time Mum and experiencing a completely new path and challenges is a journey in itself, throw a prenatal diagnosis in the mix with a health condition and you’ve got yourself months of anxiety and worry about whats to come. For us it is the unknown, yes we can be told worse case scenarios by doctors but it doesn’t make it any easier knowing thats what they give. I am mentally preparing myself for the worse, it’s hard not to worry especially being a natural born worrier.
I’ve accepted her diagnosis of having Down Syndrome, that’s not who she is it’s just a part of her. Yes life will be a little different but I feel like we will appreciate so much more and that’s what a lot of people lack is appreciation for all the little things. It’s the thought of your child being sick, being in hospital and having surgery and the word ‘survival rates’ being mentioned to you and that it’s ‘lower for children with DS’ in terms of open heart surgery. It really does not matter how many people tell me about someone they know who’s got a hole in their heart and live a “perfectly normal life”. What if our little girl doesn’t live a ‘perfectly normal life’? I know people only say it to comfort you but for anyone in our position, maybe you feel the same that the only person who can comfort you is the person you are going through this with. I just feel broken right now of everything to come, my feelings will change in time, I will pick myself up because I have to, but for now I feel so incredibly sad this is happening.
Going back to our appointment the cardiologist talked us through what a normal heart is and how it operates with its four different chambers and then what our baby girl’s heart looks like. The tears just fell down my face as he spoke, I had that horrible lump in my throat and I just wanted it all to go away. People tell me that I am strong, but the person I admire the most is Dom. How he keeps it together for me I don’t know, he is there holding my hand or giving me that little squeeze on the back of my neck to say ‘its going to be okay’ and I am so grateful he is there. I made myself to be that independent woman who says “I don’t need no man” and I snap my fingers with some sass but the truth is I do need him, more than ever. I say to him “I couldn’t do this without you” to which he replies “you wouldn’t be in this position without me in the first place” and we have a little chuckle.
So our baby girl has a complete Atrioventricular Septal Defect (AVSD) which basically means there is a very large hole in the middle of her heart, along with a leaky valve. She will need to have surgery and this won’t close on it’s own. When the baby is born she could struggle with her breathing, and be quite breathless as if she is constantly running. I tell you now I will pray every day that a miracle happens and this isn’t the case. I always pray for her strength and good health anyway but I think we need a miracle.
The past few weeks seem to have been the hardest, I feel like I carry on as normal but inside my own heart feels cracked. We had our second cardiologist appointment today, and its the last one as they said we don’t need to go back until she is born. I’m writing this today because it feels right, my eyes are tired from crying and all I want to do is go to bed for a whole week and wake up feeling better. I feel emotionally exhausted and she’s not even here yet.
Not the most positive post from me, but at 28 weeks +5 days pregnant I am still here riding this rollercoaster of life. Nothing worth having is ever easy, I have to remind myself this on the hardest of days and I just picture our little girl here with us when the times right for her arrival and I feel so much emotion and love, that I cannot wait to share it with her.