A New Year


I haven’t updated this blog in a while so I thought I would give you an update as to where we are with Little Romeo!

Next week he will be 10 months old, it’s crazy how quickly time has gone 😳. Mumma has started organising his first birthday party which I am so excited for! He’s had such a tough year he deserves the best party I can give him. 🎈

Since I last updated he has had 3 Echo’s and 2 ECG’s. He is still currently on 3 monthly cardiac reviews, the right hand side of his heart is still very dilated. His tricuspid valve is leaking moderate to severe, he also has a small ASD which is shunting blood flow left to right which is affecting the dilation of his right side. His latest ECG is also showing right bundle branch block. Currently he is still on his diuretics to reduce swelling on his heart but I am unsure as to what the next steps are.

He still only weighs 12lb3oz, the cardiologists have referred him to genetics for further testing to see if there is a genetic reason why he is still so small however all other tests previously have come back fine and his paediatrician is thinking that his slow weight gain is more due to how hard his heart is working and how much calories it is consuming. He had endocrine bloods taken which show that all his growth hormones are normal which gives me faith that genetics will come back okay. His bloods did show that he has a low iron count and has now been put on iron supplements.

We are still currently feeding through the NG tube, we have tried to alter feeding plans to help with weaning but it’s very hard to get the most calories into him. We have now been referred to SALT to help with his oral aversion. His psychological trauma goes very deep and I feel that this will be a long journey to wean him from the tube. He has a fear of wet textures like purees and I believe this is down to how much he is physically sick. Our gateway in is hard foods like biscuits and rice cakes as he is more willing to put these into his mouth so we are focusing on that.

He is sick atleast twice a day; now I’m not talking about baby sick like a little bit of dribble out the mouth, he full on wretches to bring up all of his stomach contents. It is horrific to watch and I wish more than anything I could take this away from him as he has a genuine fear in his eyes every time it happens. 😔

He still currently has his stoma, we are waiting on a date to get this reversed which should hopefully be in March. I have asked the team to go ahead with a G Tube at the same time so he doesn’t have to go under anaesthetic twice as ultimately he will need a G Tube. An NG tube should only be used temporarily, we are now on month 6. I can’t wait for him to get the G Tube, I am hoping this should reduce his sickness and also I can start him on a blended diet which I think is crucial for getting him to start gaining weight. It also takes away the trauma of weekly tube changes which should make a detrimental change to his mental health with regards to trauma and stress.

Romeo also had his hearing test last month, I truly thought it all went okay. I’m with him everyday he can definitely hear. But the results show other wise. They suspect he has conductive hearing loss in both ears and also glue ear. We will be going back to see the audiologists every 3 months to explore further.

Developmentally Romeo is not much further than he was last time I updated. We are currently working on trying to get him to roll on his front, he is so close and I’m hoping in the next couple of weeks his will master this. He still currently doesn’t sit unaided but we are spending more time in his bumbo trying to encourage him. We are waiting on a referral to physio to help with this. Cognitively though I believe he is there, he is so good with his hands and his pincer grip. He can now shake his head and he loves to high 5 and play peek a boo!

Comparison is the thief of joy! Last year everything really took a toll on my mental health. I would forever be comparing him to other babies his age and worry constantly about his future. My anxiety was through the roof and I was showing signs of post natal depression as well as post traumatic stress disorder. I have started seeing a counsellor once a week which has helped me massively and I’ve learnt to control my feelings and emotions. Although they are all completely valid I understand that I should not let them consume me as much as I did.

We’ve been on a rollercoaster and it is okay not to be okay. We’ve been through more in a year than most people have in a lifetime but I have learnt to embrace each day as it comes, live in the moment and appreciate Romeo the way he is. I don’t have a clue what this year has ahead of us, but what I do know is that I am going to make the most of it. I am going to enjoy every moment with Romeo. I am going to celebrate even the tiniest victories and I am going to carry on being the best Mum/Carer/Nurse/Friend to him as I can! ❤️

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