Okay so in 2 weeks time my baby will be 3 months old… 3 months 😳 where has the time gone?
So a little update to where we are, Romeo now weighs 7lb6oz so still about the same size as a newborn, it’s nice that I still feel like I have a newborn baby but I do often get looks from strangers when I’m out probably thinking she’s not supporting that newborns head, he is perfectly capable of holding his own head up now. I always get comments “that’s a new one”, actually he’s been around for a while and that is definitely a smile and not wind.
Romeo’s first smile was on the 16th May, it is beautiful his whole face lights up I love it and fall more and more in love with him everyday 🥰
Since starting this blog I made Romeo his own Instagram to post photos of his progress and I have to say the whole CHD community is amazing, it’s nice being able to speak to other parents going through the same thing and I’ve had lots of nice messages from other mums who are about to embark on this adventure. I was speaking to one mum who prompted me to ring the hospital, since Romeo was born he had only had his oxygens saturation’s taken once at a hospital appointment and that was because I asked them to.
Long story short because Romeo didn’t go into NICU when he was born they basically didn’t refer him over properly, so since contacting the hospital things are starting to fall into place and making this all seem a bit more real.
We have a nurse now come round to us every Friday to take his saturation’s and weigh him; so far so good averaging around 97, one day he got all the way up to 100!
We now also have a dietician which we should have had from the very start considering his birth weight. She has prescribed us Infatrini so Romeo can start bulking up and gaining the weight he needs for surgery. It’s been a nightmare trying to sort out his repeat prescription and the last couple of weeks have felt like I have constantly been to the doctors and pharmacy trying to get it as last weekend we ran out and I had to give him his old formula which didn’t really agree with his stomach. But finally after speaking to the GP the repeat prescription is in and the chemist are ordering it in each time so my kitchen is starting to resemble a shopping aisle in the supermarket.
We have also been to visit the Ocean Ward in Southampton which is where Romeo will be based when he goes in for his surgery. They carried out an Echo on Romeo and during this they found another problem with his heart, he has Tricuspid Valve Regurgitation which at the moment is not problematic however I fear this will mean further surgery when he is older for a complete valve replacement.
Sometimes I feel a bit cheated out of my maternity leave, every week is dictated by either a hospital appointment, doctors, nurse visits or waiting around at the pharmacy and now that 3 months have nearly passed it makes me scared. Time is flying by and I feel like I haven’t been able to properly enjoy my time off with Romeo and I know the quicker it is going the sooner he will be wheeled down to the operating theatre.
Now I know I should be thinking positive but I’m only human and sometimes it’s okay to be upset or scared. Being a mum is the toughest job you will have in your life and you just want the best for your baby and deep down I am so scared for the future with him, he looks so happy and healthy on the outside and it kills me knowing the battle he is about to face. We still don’t have a date for surgery, he basically needs to double his weight before then and luckily so far we haven’t had any Tet Spells but I am a realist and know that it could happen at any time and I need to prepare myself for that.
But from now on I will just be enjoying every single day I spend with you Romie, falling more in love with you and holding you tighter each day. I haven’t been cheated out of my maternity leave, this is my new normal now and the fact that I have Romeo by my side I wouldn’t change it for the world. My special little warrior ❤️