Romeo had been sleeping a lot more, in fact he was only awake for an hour at most a couple of times a day. I missed him, in a weird way it was like a gradual way of his absence becoming more present. Despite this he almost had a routine of awake time, he didn’t have a lot of energy it would consist of flicking between his favourite things to watch; Luca, Moana, Cocomelon & Peppa Pig. Playing with his favourite toys. We would read his favourite books to him, laying next to his bed reading whilst he would put his hand on ours through the mesh of his bed guard. We would listen to his favourite reggae songs on the Alexa and have a dance in the kitchen. All the things he truly loved doing we did with him in those final weeks.

October 11th 2021, unbeknownst to us his last full day here. He had been suffering with a cold for the last couple of days and certainly looked a lot more blue round his lips and extremities but I wasn’t as concerned as I had been in the September as he seemed well enough in himself. It was just a normal day at home, he watched Luca and Peppa, we read books in his room, we danced in the kitchen to Alexa. I had daily calls with the community nurses and mentioned about his cold she said we could have a zoom call with the palliative care doctor if I was concerned but he seemed well enough other than a few more vomits. We decided that day to give him dioralyte instead of full feeds to keep him hydrated and to keep it down and he had a few adjustments to his meds.

We had a new water colouring mat arrive that day so in the evening when he was awake we did some drawing like we always did, we noticed the cat hanging around and paying more attention to Romeo than usual but didn’t think anything of it. Whilst drawing Romeo would pass his pen to us to have a go but this time he held it out for someone else, I even made a comment saying “there’s no one there Romeo, mummy draw?”, he shook his head and he was adamant of passing his pen to someone we couldn’t see. Now it’s a well documented phenomenon that during end of life people tend to see deceased relatives. I don’t know who he saw that night but he wasn’t scared, he wanted to share his pen and play with this person, whoever it was it was Romeo’s guardian angel and they came to lead him on his way.

The Monday before we had a new nurse on his package, she was an experienced nurse who had worked in PICU before we had been there. She was back on this Monday, she started her shift that night at 10pm and like clockwork Romeo woke up again, he always did wake up at this time probably being nosey to see who was looking after him through the night. He was extra cuddly and a bit more miserable than he had been through the day, I noticed he was a lot colder than he had been before so attempted to put socks under his baby grow but he didn’t want them on, I also noticed his breathing was a bit noisier but didn’t think too much of it as he did still have a cold. Lucia was a bit grizzly that night and normally every time he went up to his bed I would kiss him but this night with the commotion with Lucia I forgot. He waved at me from the stairs like he always did when he went to bed, I just didn’t know that would be the last time I would see it.

When I got into bed with Lucia I realised I hadn’t kissed him goodnight, normally once he was settled in bed we wouldn’t disturb him but whilst Jimmy was laying with him he realised and something made him text me to say I could come and kiss him goodnight and I’m so thankful I did. I had previously text my mum that night saying I was worried about Romeo due to the blueness and him being more cooler round the edges, I text her a lot when I was concerned about Romeo but we would always see how he is in the morning, he wasn’t as poorly as he was in September so it wasn’t an immediate concern. That was the first night in a while that I went to sleep worried about him, worried that he could deteriorate and it could be a matter of days not knowing that it could be a matter of hours.

Just before 2am I woke up to a knock on my bedroom door, I opened it and looked for the nurse in the hallway but couldn’t see her. I shut the door and got back into bed thinking I must have dreamt it, then I heard another knock. I got out of bed and went into Romeo’s room where she was observing him and his breaths, I immediately went to wake Jimmy up not knowing just how severe things were, I walked straight back into his room and he had took his last breath just as I had got through the door. I just remember Jimmy walking through the door and her saying “I’m so sorry, he’s gone”. She immediately picked him up and placed him in my arms whilst my heart completely shattered.

I remember despite the immense pain and shock I felt calmer than I thought I would be in that situation, my legs didn’t buckle beneath me, I didn’t let out that blood curdling scream I thought I would, I just kissed and cuddled him and cried. We knew this was coming eventually, it was more of a feeling of shit, it’s actually happened now and coming to the realisation that he was actually gone. I had been living with anticipatory grief for a long time before this day, maybe that had prepared me mentally; slightly, but still not enough. I don’t think there is a pain worse in the world than a parent losing their child.

After about half an hour I called my mum, I couldn’t physically say the words but she knew, I think all I could muster was the word “mum” and she came straight over. Over the next couple of hours all our immediate family came to see him and us. The out of hours doctor came round to verify his death and the nurse arranged all the admin and kept us going with cups of coffee. We played Luca on the TV for him, it was comforting to have it on in the background even though he was no longer there, it was just what we did with Romeo and felt right. I danced with him in the kitchen one last time to Bob Marley and just tried to take in every last moment with him at home. The hours that passed were slow and torturous, we were waiting for the hospice to be ready as it had always been arranged that we would take him there when this day came.

The time had come, we were ready to go. The nurse put his hat on and wrapped his blanket around him and then it came, that blood curdling scream of realisation, my baby was dead and this was the last time he would be at home. We carried him out to the car one last time, I got into the back and the nurse placed him on my lap, she gave me a hug and a kiss and sent us off on our way to the hospice. She was incredible the whole night, she held everything together in what must have been the most difficult shift and she was so compassionate; I often think of her.

Looking back all the signs we’re there, all the things I knew to look out for they were all there, maybe I just didn’t want to accept it. I always had this thought that he would die in my arms and although he took his last breath as soon as I walked into the room it kills me that I wasn’t holding him when he did. The only comfort I can take is that we were there immediately, she was by his side and he was peaceful. He went in the most peaceful way we could have ever wished for him, in his own bed at home and most importantly he didn’t suffer.

“If there ever comes a day when we can’t be together, keep me in your heart, I’ll stay there forever”

In loving memory of our sweet angel Romeo 🤍 05/04/19 10.37am – 12/10/21 02.00am

We spent just over 2 weeks in PICU after we got told Romeo was palliative, during this time they arranged for us to go to Peppa Pig World with all of our family which was just the best day ever. Romeo stayed awake the whole day, didn’t cry once and just enjoyed every moment we were there. We are so glad we got these special memories with him that day, I have the sweetest video of him all excited in the ambulance kicking his legs the whole way there, he must have got back to PICU and thought it was the most boring place ever as he was so stimulated. We were also finally able to take Romeo off the ward on our own, we would take him for walks around the hospital, to the gardens, over to Ronald McDonald and every couple of days we would take him to the sensory room, as he was still on the milrinone and at this point he was in the best mood he’s ever been in, it was so amazing to see and we managed to capture some really lovely moments of us together as a family.

There were quite a few things that needed to be sorted to enable us to take him home, he still needed bi-pap at night time so they had to arrange the home ventilator and training for us, he was also coming home on a lot more medication than he had previously, some of which had to be ordered in specially for him. As he had been dependent on Milrinone for 4 and a half months we couldn’t just wean him off this, they arranged for him to go onto an oral version called Emoxinone, it wasn’t as good as Milrinone but the closest they could get for us to go home on, this drug helps with heart function. During the switch over on to this Romeo had to be monitored, it’s not a drug that is used very often and they had to get advice from another hospital in the UK as they had never sent someone home on it before. They also discussed Romeo’s pacemaker with us, initially they wanted to switch it off completely but we weren’t comfortable with this, he was the happiest and healthiest he had ever been and we weren’t ready to lose him if he just had an arrhythmia, we agreed they could reduce the back up rate down to 50bpm and I’m so glad we did as it turned out Romeo did suffer with quite a lot of arrhythmias.

On the 17th of May 2021 we were transferred from PICU to our local hospice, this was an emotional day and felt like the end of an era knowing full well we would never be coming back to Southampton with Romeo. We were happy it was finally one step closer to taking him home for good. We only spent 2 nights here, it was a step down from hospital to get us used to being in complete charge of his care but we were ready and fully capable and decided to leave early so we could finally see all our family again with Romeo with no restrictions in place.

Taking him in the car ourselves for the first time in 5 months was just the best feeling, when we finally got home and took him into the house he seemed quiet and subdued just taking it all in, he knew it was home and recognised it but it had been such a long time for him that I think it took him a while to adjust to the fact that he was finally back now. The first couple of days at home were so amazing, he still had the effects of the Milrinone in his system and was just the happiest, he had so much fun playing with his sister and cousins and for a while you would almost forget that he was palliative, he seemed so healthy and perfect it just didn’t seem possible that he was terminally ill.

There was an awful lot of admin that came with palliative care, lots of medicines needed arranging between our gp, pharmacy and hospital. We had weekly visits from the community nurse to take Romeo’s bloods, change his dressings and to monitor his condition and monthly calls at first with our palliative care doctors. We also had 6 weekly home visits from the GP and meetings with the agency that was putting our package in place for overnight care. I was on the phone near enough every day speaking to some kind of medical person but this didn’t hinder the time we had together, we felt more support than we had ever experienced with Romeo and all the teams we had in place were amazing and went above and beyond for us.

After about a month our care package was put into place and we started with 3 nights a week, initially they wanted 5 but it felt like overkill as we wanted to provide him with as much care ourselves as we physically could. A lot of his nurses from PICU joined the agency and it was so nice having people we knew and who knew Romeo in our home caring for him overnight.

Romeo had a few infections in his time at home which we had to take him to hospital for antibiotics due to him having a central line but as he was now palliative I made sure that the hospital never kept us in overnight, we were at home now and there was nothing that was going to separate our family unit.

Towards the end of July it was apparent that Romeo was deteriorating, his mood just generally seemed lower, he was a bit more breathless and tired than before so it was agreed with palliative care that he would be started on morphine. That first day I just remember feeling so upset, we had spent months in hospital weaning him off morphine and now here he was straight back on it but knowing that this was it now and he would be on it for the rest of his life. We started having calls with palliative care every other week which soon became weekly, more and more drugs were being added to manage Romeo’s symptoms and less and less milk was being given to him due to his gut slowing down. His mood was getting worse due to lack of oxygen flow to his brain so we started getting deliveries of the more controlled medicines. Unlike in hospital where you have doctors and nurses on hand to agree to administer drugs it was now all our judgement. We had to decide when we thought he needed something stronger. One weekend he seemed to be struggling, his mood was extremely bad and he was almost inconsolable, it was on his symptom management plan to administer midazolam when he got like that, we had spoken to the doctors and nurses lots about it previously and had tried putting it off for as long as possible but it was apparent he needed it now. Unfortunately I read the bottle wrong and gave him 10 times the amount he should have had, I noticed my mistake straight away and called the hospital for advice but it was just a wait and see how he responds situation. He had previously had much higher doses than this in hospital so it wasn’t overly dangerous for him but it was still terrifying for me and I felt awful for doing it.

During our time at home we tried to make as many memories as we could, we took him to the aquarium, we would take him to feed the ducks, spend time with our families and go for little car drives which he loved. We also managed 2 little breaks, we were due to go to a caravan park in Wales for a week but typically the day before Romeo woke up with a temperature. The hospital knew how important it was for us to get away as a family and put him on oral antibiotics so we could still go. Unfortunately the oral antibiotics just didn’t shift it for him and after a day and a half we made the decision to bring him home to have IV antibiotics. His health was more important. We then had another week at The Bluebells, our favourite place to take Romeo. They have lots of amazing facilities but our favourites were the sensory room and swimming pool. Our nurse agreed to meet us there one day to change his Hickman line dressing so we could take him swimming which was so special for me, I loved taking him swimming and to be able to do it one last time meant the world to me.

A week later in August just after his nurse had left one morning my waters suddenly broke 3 weeks early, I had polyhydramnios so there was an awful lot. I was stood out in the garden in the start of labour calling around everyone involved in Romeo’s care, even then he still came first. We had a backup plan of getting a 24 hour care package in place so he could stay at home but that was due for 2 weeks later when I was supposed to be induced. We arranged for him to go to the hospice for a couple of nights, this was the longest time I had ever gone without seeing him in my life, it was only 48 hours but I had spent every day of his life with him and having no choice but to leave him with someone else broke my heart. The hospital were great and knew our situation so made sure that once Lucia was here and we were both okay that we would be the first to be discharged so we could go and pick up Romeo. I’m so glad she did come early so she could meet her brother and spend time with him even if he wasn’t that interested in her at first.

It was a big adjustment having a new baby in the house whilst caring for a terminally ill child, as I was breastfeeding Lucia it made it harder for me to do as much of his care so during this time Jimmy had to do most things for Romeo now. At times I felt so much guilt, he would hold his hands up to me and shout for me but I couldn’t pick him up as much as I wish I could. From here on our care package started increasing and we soon went from 5 nights a week to 7 nights a week.

Romeo had started suffering from funny spells, these were basically arrhythmias. He would have them randomly the first one we noticed was during a bath one night, other times they coincided with medicine and sometimes they would come on if he was really upset about something. He would go clammy and pale and we could spot them straight away. We spoke to the consultant who warned us that these could be deadly for him and one day he might not recover from one which was horrifying.

Watching him deteriorate over the next couple weeks and months was torture and now that looming feeling of coming to terms with his fate was hanging over us. He was tiring a lot more and spending less time awake, his mood was generally lower and leaving the house with him was becoming more difficult as he just wasn’t up for it. I remember the start of September I had a conversation with his nurse and I asked her do you think he will make it through the month and she said sadly, “honestly, no”. This was heartbreaking but deep down I knew it myself, I could see it. I had started googling signs of death nearing, reading everything I could just to try and prepare myself.

September 19th 2021 – the day I thought I was going to lose him. The GP had just been round to observe him and he definitely seemed a lot worse than the month before, his colouring was awful, he was extremely lethargic and breathless but the thing that really struck me was that the sparkle in his eye was nowhere to be seen. He just looked vacant and like he had had enough. Our community nurse came over shortly after to drop some meds round and she was immediately concerned, she could see it to. He wasn’t right. We had a zoom call with the palliative doctor at the drop of a hat to discuss what was happening and how he was. I asked her how long we had left and I remember her saying if he’s deteriorating in days it’s weeks, if he’s deteriorating in hours it’s days and I remember just thinking he was getting worse by the hour. I was convinced he was going to die that night. I was petrified, I think even the nurse on that night was worried, but soon enough morning came round and he was still here, he still wasn’t great but he was here. In my heart I thought this will be the night he passes away. All our family rallied round us that weekend and the house was never really empty which to be honest I struggled with. I was scared that this was going to be my last day with him and I didn’t really get a moment to myself with him. I remember laying with him in his bedroom and saying to him if you’re ready baby you can go, I didn’t want him to suffer anymore. His body was tired. He was tired. Our care package had only just increased to 7 nights and they were struggling to get a nurse to cover that night, eventually they called to say someone could come but I declined. I thought this was going to be our final night together so we put his mattress downstairs, we set up an air bed next to it and the 4 of us all slept downstairs together as a family, not knowing what the night may hold. Then morning came round again, and he was awake, he was alive and he was almost back to his sassy self shouting at us to fill up his water bottle. He came so close but he wasn’t ready. Day by day he got better and that sparkle in his eye returned.

Knowing how close he came that weekend we soon realised that if he ever got poorly like that again then he wouldn’t come back from it. We now knew the signs and it made us appreciate every second, minute, hour of the day so much more. October came round and weirdly I didn’t feel that sense of dread I felt in the beginning of September, I felt confident in Romeo and his strength. He was now sleeping 20 hours of the day but when he was awake he was playful and chatty. We were looking to the future again and thought maybe he would make it till Christmas, little did we know we only had a matter of weeks.

PICU was Romeo’s home for 117 days, this place will forever hold a special place in our hearts. Despite all the scary times, devastating conversations and just witnessing our little boy go through so much in there it felt like home to us and we made so many happy memories with Romeo there when he seemed his healthiest thanks to the magic wonder drug Milrinone.

I think in total Romeo was intubated 7 times in PICU, it was a long road with lots of ups and downs, he nearly left once but ended up with recurring infections and had to stay. He moved beds 8 times in there we often joked that he was going to try out every bed space. We were willing to spend over a year in there, however long it would take to get him a new heart. Gradually we started moving more of his stuff in there, toys, clothes, books, his playmat; making it more homely for him and he loved it. The nurses would fight over him at handover time and even if some of his favourites didn’t get to look after him for their shift they would be sure to come over, say hello and check on him.

From January to April he was very poorly, he had operations for his Hickman line, muscle biopsy and lumbar puncture. One day we were taken by complete surprise when the doctors came over during handover and told us he needed intubating again as his work of breathing had increased from another infection, this was the last ever time he was intubated but the scariest. They gave us 5 minutes to kiss and cuddle him whilst they sorted out all the trolleys but told us he may not handle it, this was terrifying and we were taken to the parents room to wait for an update. Luckily he handled it better than they expected and he spent the next 7 days on the ventilator, we were getting prepared to extubate him on the 17th of March which also happened to be daddy’s birthday but that night we were woken by a phone call in the early hours, Romeo had suffered a cardiac arrest. We rushed back over from Ronald McDonald to see him and I could tell straight away he had had another stroke. His central line had somehow fallen out of his neck so they had to anaesthetise him to put another one in which caused him to arrest, it was apparent from this that he probably wouldn’t have handled any more anaesthetics. The next day was torture, he was stuck in a prolonged SVT with his heart rate continuously stuck at 160bpm, baring in mind his resting heart rate should have been about 90bpm. He wasn’t regaining movement in his arm and leg and it was one of the worst days in there watching him struggling. He stayed on the ventilator for another 7 days after this and during this time he was moved from a cot to a bed so that we could lay with him.

When Romeo came off the ventilator this time he was so different, we finally started seeing his personality shine back through, he seemed so much happier and healthier. We brought his bath in from home and once his femoral line was removed we could give him his first bath since January which he absolutely adored, he gave us the biggest smiles which we hadn’t seen in months. It was incredible and a real turning point for us. From then on he had daily baths in PICU which everyone loved watching and it was often our favourite part of the day. It took a long time to get the movement in his arm and leg better but he was now able to play and roll around like he used to at home. The nurses would take him for walks around the unit and everyday he would go and stroke the elephants at the entrance of the ward, this became his daily ritual.

We celebrated Easter, one of the nurses had arranged an Easter egg hunt around the ward which he loved. The next day was his 2nd Birthday and the staff made it so special, they decorated his bed space with bunting and balloons and one of the nurses made a delicious cake for us all. 2 days later we then celebrated our Wedding at the hospital chapel which really was the most magical day made even more special having Romeo there with us. We could never thank all the staff in there for all the amazing memories they gave us and all the times they went above and beyond for our family.

Romeo was finally getting better day by day and we could start taking him for trips off the ward to the coffee shop or gardens on the hospital grounds, he had so much wonder in his eyes and it was beautiful just spending time in the fresh air with him. In the background there was a lot going on, we had asked for a second opinion from Newcastle with regards to listing Romeo for a transplant and we were anxiously awaiting results from his muscle biopsy to find out whether he would be a suitable candidate.

On the 30th of April we finally had some answers, but not the answers we wanted. Although his muscle biopsy had come back clear for mitochondrial disease the transplant team at Newcastle had decided that Romeo was not a suitable candidate for transplant and there was nothing more that could be done for him. Our hearts completely shattered knowing that the only thing that could save him was no longer a possibility. Our baby was now palliative.

In hindsight this was probably the best decision as much as we wanted him to have a chance at life realistically Romeo wouldn’t have survived another year in hospital, he would have suffered unnecessarily and that is selfish of us for wanting to put him through it knowing that we never would have got the right outcome. As much as I wanted to keep fighting back then I am so grateful that we did eventually take him home; no more suffering for him, surrounded by love with his family as he deserved and slipping away in the comfort of his own bed.

Originally after Romeo’s cardiac catheter it was discussed that he had 2 very leaky valves, the plan was to discuss whether or not to replace these valves whilst they performed his pacemaker surgery. Every time the doctors came to do their rounds I was anticipating to find out what the plan was until one day the doctor came round and told me that Romeo has Restrictive Cardiomyopathy and will eventually need a heart transplant. He just dropped this bombshell on me in a passing conversation, Jimmy was eating his breakfast in the kitchen so I had to break the news to him and obviously he was devastated.

Thinking about it more I wasn’t happy about how we were just given this new diagnosis, it was insensitive of them to just drop it in to conversation like that without us both being together and given the opportunity to discuss it in length and ask questions.

Restrictive Cardiomyopathy is the rarest form of cardiomyopathy affecting as little as less than one in a million children. Because of this it is difficult to diagnose and to this day they still haven’t 100% given us the official diagnosis however his cardiologist is adamant this is what Romeo has, all the signs are showing it. His heart muscle does not fully relax and is very stiff which in turn has led to complete heart block, his atriums are enlarged, he has a leaky tricuspid valve, a leaky pulmonary valve and a leaky mitral valve. All of this combined leads to Romeo having a back flow of blood to the veins causing an enlarged liver and increased swelling all over. He is in congestive heart failure which we are currently managing with medicine however the only cure for this will be a heart transplant.

We are yet to be referred to the Transplant Team at Great Ormond Street Hospital however Romeo will have regular appointments at Southampton to keep a close eye on his heart as this is unfortunately a progressive disease. He has been through so much in his life so far but this is only just the start of his journey and this will be the biggest battle he is yet to face.

Since we have left hospital we have celebrated Romeo’s first birthday, this is a massive milestone especially considering that just over a month ago we thought we had lost him. It wasn’t the birthday we had planned, due to the global pandemic no one else could celebrate with us but we had video calls and our own little party and barbecue at home and the day that lockdown gets lifted we will be sure to celebrate with all our loved ones.

It’s crazy to think just how much this little guy has been through in his first year of life, he is the strongest person I know and he has taught me so much. I don’t know what the next year has in store for us and I don’t know how much time we have before he starts showing the signs that he needs a new heart. It hasn’t been the easiest road but I am so appreciative of everything we have been through because he is here with us and that’s all that truly matters! Happy 1st Birthday Romeo, you are an inspiration and we love you more than words could ever explain.♥️

Romeo was first on the list for the day, with all the madness of Coronavirus we weren’t sure if Daddy would be able to see him before hand as the ward had restricted it to one parent only by this point. Luckily the nurse in charge allowed him and we are so thankful as this was his riskiest op yet; carrying a 5% risk of sudden death, major organ damage and stroke.

The minutes were ticking by and finally the cardiac anaesthetist came over to see us, he told us they were discussing Romeo in the MDT meeting that morning as the general anaesthetist was not comfortable with doing the MRI due to Romeo’s previous episodes of complete heart block. It was frustrating as this was our only chance to really get a better understanding of Romeo and his developmental delays and seeing the impact his lack of weight gain is having on his brain however I was happy that they were honest with us and if they weren’t comfortable doing it then we weren’t either, it’s not worth the risk. They told us if he went into heart block whilst he was in the imaging unit they would not be able to get him out in time to resuscitate him which just doesn’t even bare thinking about.

He finally went down to theatre about 10am, we were both with him when they put him to sleep. The hardest part of that was watching them put the defibrillator pads on him, they obviously were very concerned as to how Romeo was going to react to another anaesthetic and it immediately took me back to that day that his heart stopped in my arms. As the gas started working it’s magic I was warily looking at the screen just expecting the numbers to start plummeting however Romeo was on his best behaviour and went down with no issues. The surgery itself was about 4 hours and we got the call to come back up to the ward to speak to the heart surgeon. He came into the room smiling and we knew he was fine, he had no funny heart rhythms the whole time which was such a relief. We went down to see him in PICU an hour later and later on that evening he was extubated and moved back up to the ward the next day.

The surgery was a full sternotomy again opening up the old scar Romeo had from his first heart surgery, the device itself is 2 x 4cm and is situated on his right hand side below his ribcage. Due to Romeo’s size it’s fairly noticeable through his skin but hopefully as he gets bigger and the pacemaker settles in more you won’t be able to notice it.

I’m unsure as to whether Romeo has even used his pacemaker yet, we are due our first virtual pacemaker clinic next month so I will get a better understanding then. Initially I had an app on my phone which connects by Bluetooth to his pacemaker but that wasn’t working properly so they sent us out a box which records all the data and we can transmit to the clinic. His rate is set at 90bpm so any time his heart rate drops below that it will send a little shock to the heart to put it back in rhythm. Hopefully the battery should last around 8 years before it needs replacing.

We are so thankful Romeo has his pacemaker, it’s his safety blanket and should he ever have any rhythm issues again this will save his life. And once again we are incredibly proud of Romeo, this was his 4th surgery and he recovered amazingly well and finally 5 days after his op we were discharged from hospital.

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! ❤️