Sepsis

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4 days into the new year and Romeo was admitted to hospital again with worsening heart failure. He was extremely puffy all over due to fluid overload and was kept in whilst they adjusted his medicines and kept an eye on some arythmias he was having. This worked in our favour as it hurried up his long overdue operation for his stoma reversal, peg and skin biopsy. After a couple of days in hospital we were discharged for a week before we were due to come back in for his surgery. His cardiologist had decided it was best to admit him a couple of days before so that he could be started on Milrinone to help with his heart failure and to give him the best chance possible as this surgery was extremely risky due to his poor heart function.

20th of January was the day of surgery, originally he was on the afternoon list but there was a lot of different procedures he was going to be having all at once and due to him being so risky they wanted to get him done first. Although this wasn’t cardiac surgery he was so high risk that he had two senior cardiac anaesthetists looking after him. The night before Romeo’s consultant had come to see us and explained that due to his heart, the risks involved and Romeo’s poor overall prognosis that a decision had been made that if anything happened to Romeo during surgery they would resuscitate him but they would not offer him ECMO. This was a devastating blow as this made this surgery even scarier but we had no choice but to go ahead with this so that once and for all we could finally move ahead with transplant. That morning we both walked down to theatre with him and the anaesthetists let us both stay and kiss him whilst he was going under, once again they promised to take good care of him and they did. Within the first hour we had a phone call to say that he handled the anaesthetic well and that they were about to start the list of procedures. He was in surgery for about 4 hours in total and we were finally able to go and see him in PICU. To both of our surprise he was already extubated and awake.

After surgery

He spent one night in PICU and the next day was taken back up to the ward, it was the biggest relief knowing he had made it through this surgery. We’ve had a lot of conflicting opinions from different doctors telling us he would not survive this op so to have him back on the ward safe was the best feeling. Unfortunately within 24 hours we were brought back to the stark reality of how ill Romeo could be. It was decided that night that he would be admitted back to PICU; where we still are 3 months later.

Over a couple of days it was clear he was declining, his oxygen requirement was getting higher and higher whilst he was working harder and harder to breathe. Within 3 days he ended up on the ventilator. This was the start of our nightmare. The day after he was ventilated it became apparent that Romeo was in big trouble, he had sepsis. Looking back now it almost seems a blur, so much happened it’s almost hard to remember but visually it was very apparent that every organ in Romeo’s body was shutting down. He swelled up like a balloon due to his heart and kidneys failing, his skin yellow and translucent as his liver was getting worse and worse. They were getting the blood ready to put him onto dialysis as by this point his kidneys had started completely shutting down.

You don’t realise at the time but all of a sudden there is a box of tissues next to you, you never noticed them before. The consultant is asking you to come to a room so they can talk to you. The kind of room you know exists but you never think you will find yourself in. Strategically placed sofas, a box of tissues on the table, posters on the wall very fitting with the conversations you know you’re about to have. They told us that this was probably it, they were getting ready to put Romeo on dialysis but the chances are he wouldn’t survive, they would arrange for palliative care to come and speak to us about our wishes. At that moment then the ground swallowed us up whole. We took a moment to process everything that had just been said to us, we sat and cried and spoke about how we would want to proceed. Conversations you think you will never have as parents. We had it all planned out, we shouldn’t have to but we did because this was now our reality.

I’ve always said Romeo is a cat with 9 lives, I’m sure he can sense when we’re having awful conversations about him. By some miracle shortly after that meeting with the consultant Romeo’s kidneys started working again, it was slow, really really slow but it was progress. His urine output was 5mls an hour, a couple of hours later it was 10mls. We never in our lives thought we would be so obsessed with a catheter and urine but this liquid was like gold to us, this was our hope. Our baby was there fighting, he wasn’t ready to give up. He was still very critical and it was very much a case of taking it hour by hour. The next day it was decided that we would get him baptised and also palliative care arranged with the ward for his sister to come visit him. Despite the situation we had a lovely afternoon memory making and doing handprints. He remained very critical for the next couple of days on every inotrope going. He had more infusions and lines coming out of him than I thought was possible but day by day he slowly started getting better. He showed us all what a fighter he is.

Being baptised

Stroke

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It’s been a long time since I’ve updated this blog, mainly for a good reason as Romeo had a really long run of good health. 7 months without a hospital admission, he had seemed the best he had ever been although looking back at pictures of him now I can see that actually he looked very sick and had been deteriorating over time.

December the 18th started as any normal day, he seemed his happy and cheeky self and gave us no cause for concern. It was his sisters last day of school and we were excited to go and pick her up with him ready for a couple of days of Christmas fun at home. Myself and Romeo stayed in the car whilst Daddy collected her from the playground, they had an assembly that over ran so were taking a bit longer than usual. Romeo started getting unsettled in his car seat so I jumped in the back and gave him a cuddle, he seemed to get really hot so I took off his hat and jacket. He was unusually upset, something didn’t seem right with him. As I put him back into the car seat he made a scream that I didn’t recognise; I had never heard this noise come from him before. Immediately I sensed something wasn’t right. I jumped back in the drivers seat whilst his sister and daddy got back in the car. I was driving home fast, I could just sense there was something wrong with him and I needed to get him back home to assess him. I hurried us all in the house, Jimmy had Romeo in his arms. As soon as we walked through the door I asked how is he and I noticed that he was completely floppy on his right side, I immediately shouted he’s having a stroke. Jimmy told me to call an ambulance straight away. I’m normally so composed in medical situations with Romeo but this one completely blind sided me, he was fine this morning, how is this even happening? I was stood in the garden on the phone to the ambulance screaming for them to hurry up, collapsed to my knees begging for them to get there as soon as possible. I probably didn’t even make any sense to them but I was in complete shock, we all were.

The ambulance arrived quickly, I explained he was having a stroke, he was overdue a prescription of aspirin as he was high risk for blood clots due to his restrictive cardiomyopathy. We were blue lighted to the hospital but unfortunately this is where the urgency seemed to end. Maybe I didn’t make it clear enough, maybe they’re not used to seeing babies having strokes, maybe I wasn’t assertive enough either way after being blue lighted to hospital in 3 minutes it took 3 hours for a doctor to assess Romeo. Luckily by the time a doctor came to asses him he started to regain some movement in his arm and leg. He had a CT, Angiogram and and Echo but they could not find a blood clot anywhere so it was decided that he had a mini stroke. He remained in hospital for a couple of days and started on his overdue prescription of aspirin, thankfully he regained full movement after this event.

In the CT scanner

I would love to tell you that this is where the story ends when it comes to his stroke but unfortunately not. Unbeknown to us this mini stroke did in fact damage his brain, he has a small area of scarring on this part of his brain which affect the movement in his right limbs. After being discharged from hospital just before Christmas we thought things would go back to normal but this stroke was just the beginning of Romeo’s decline in health.

In the next post I will go into our journey in intensive care but for the purpose of keeping this post about his stroke we will fast forward to the early hours of St Patrick’s Day otherwise known as Daddy’s birthday. Romeo was already intubated at this time, he was due to be extubated on Daddys Birthday but unfortunately we were woken by a phone call from PICU. Romeo has had another cardiac arrest.

We went over to the PICU to see Romeo straight away, they had resuscitated him and sedated him further. I don’t think the doctors had noticed as they were more concerned about his heart rate and blood pressure but as soon as I saw him I could see that his right arm and leg weren’t moving again, once again they were complete dead weights. You could lift them and gravity would take over, he had no control over his limbs even just a cough would send them flying in the air almost like a puppet on a string due to him having no control over his reflex. We were hopeful this was just another mini stroke and that by the morning he would have regained movement. Morning time came and he was exactly the same, no control whatsoever. I started getting concerned now, last time he had regained movement within hours; 8 hours had passed and still nothing. They had arranged a CT scan to have a look.

A short while after he came back from CT the neurologist came over to see me and explain the findings from the scan. She had his previous scan from December on the computer to crosse reference with this one. On the scan from December she showed me a small area of scar tissue, to the untrained eye it would be impossible to see but as they know what they are looking out for she managed to point it out to me. On his latest CT she showed me the same area of brain but this time the scar tissue has expanded and changed colour. This is the area of his brain that was affected. Unfortunately there is no way to tell whether it would be lasting damage, it was a case of wait and see. It also put him at higher risk of this happening time and time again.

Nearly one month on from this latest stroke Romeo still does not have full movement back. His leg moves quite freely and his arm is gradually moving more and more, the main issue now is his hand. He doesn’t have any strength and has lost his grip. His left hand is his dominant hand now and he will use this all the time. It’s heartbreaking watching him and his lack of confidence with this hand now, he was always playing and inspecting toys with both of his hands and seeing him lose that is difficult.

For a child his age his brain is still developing, this part of his brain may not work properly at the moment but they are constantly evolving and creating new pathways to learn how to do these things again. We are hopeful though that with time and physio he can start to regain this strength and grip.

Romeo’s Story

Romeo’s Story

At our 20 week scan Romeo was diagnosed with a form of congenital heart disease called Tetralogy of Fallot. This is made up of 4 heart defects; a large VSD, overriding aorta, pulmonary stenosis and right ventricular hypertrophy. This particular CHD can sometimes be linked to genetic conditions so we had an amniocentesis to see if there was a genetic link, 2 weeks later just before Christmas our results came back negative and we felt a sense of relief.

5th April 2019 – 4lb5oz

Romeo was born on the 5th of April 2019 at a tiny 4lb5oz but he didn’t need any immediate medical support and his heart was okay for the time being. He would be closely monitored by the cardiologists over the coming months and they would aim to do his full repair at around 6 months old. At 3 and a half months old Romeo had stopped taking bottles as he just didn’t have the energy to feed. I took him to our local hospital and an NG tube was placed as he had lost weight and was already diagnosed failure to thrive. A couple of days later an echocardiogram and chest X-ray showed that his heart was very enlarged and he was in heart failure. The next day we were taken by ambulance to Southampton Childrens Hospital and started on diuretics to help his heart. We spent over a month in hospital and at 4 months old he had his open heart surgery for his full repair. It was also discovered whilst we were here that he had another congenital defect elsewhere on his body which he has had another surgery to repair so they requested for genetics to do further testing to see if this and his heart condition were linked; this again came back negative.

Open Heart Surgery – 9th August 2019

We had cardiologist reviews every 3 months after this but his heart wasn’t getting any smaller so he carried on his diuretics. In February last year we were back in hospital as he was showing signs of struggling again and his medication was increased. We were admitted to Southampton for an unrelated gastro review but whilst there they did lots of investigations, they had decided to do a cardiac catheter to check the pressures in his heart due to its size and shape.

After Romeo had been resuscitated – 27th Feb 2020

During his cardiac catheter his heart stopped twice but they managed to get the rhythm back after some chest massage. When we went to collect Romeo in recovery he didn’t look right and was very unsettled, shortly after he was placed into my arms he went into complete heart block and his heart stopped beating again, he went cold, purple, floppy and unresponsive. I immediately placed him on the crash trolley and got pulled away whilst they resuscitated him. Luckily they managed to get him back pretty quickly however they decided it was safest to take him back into the cath lab to place temporary pacing wires, they kept him intubated and took him down to PICU to wake him up there. They discussed him in their team meeting and it was decided he needed a permanent pacemaker to prevent this from happening again.

The day we got his diagnosis of Restrictive Cardiomyopathy – 1st March 2020

After discussions in the meeting we were given his shock new diagnosis, Restrictive Cardiomyopathy. This is the rarest form of cardiomyopathy affecting less than 1 in a million children, in this form of cardiomyopathy the heart does not relax properly due to the heart muscle being very stiff causing the atriums to enlarge. There is no cure for this all they can do is manage his heart failure with medication and eventually a heart transplant. With this new finding and due to Romeo’s weight being so low and the other diagnoses he has they did further genetic testing, once again this has come back negative but they are sure there is an underlying genetic condition.

Pacemaker Surgery – 23rd March 2020

Just before Christmas last year Romeo suffered from a mini stroke, since then he was also admitted to hospital with worsening heart failure due to his restrictive cardiomyopathy. We came into hospital again mid January for more surgery to reverse his colostomy and for a skin biopsy for further genetic testing which has since come back clear. Unfortunately he suffered from sepsis after this surgery and nearly lost his life. He has since remained in PICU where he has had a rough recovery suffering from another cardiac arrest and another stroke which has left him with weakness in his right hand. He remains in PICU dependent on a drug called milrinone which helps with his heart failure, he is also now on Bi-Pap due to being ventilated for so long. We are currently waiting on results from a muscle biopsy to see if he has mitochondrial disease, providing this comes back clear he should hopefully be placed on the urgent list for a heart transplant. Unfortunately he will have to remain in hospital until he receives a beautiful new heart, they predict this can take anywhere between 6-12 months.

Click on this image to register as an organ donor 💞

Spreading awareness for organ donation is vital to help babies like Romeo, no one wants to think of the worst happening to a loved one but it is so important to have those conversations and to share your wishes as you could save up to 9 lives.

One of a kind

Romeo is one of a kind, I hope by sharing his story I can spread awareness around the importance of organ donation. Time is against us now as his restrictive cardiomyopathy has progressed so much but we have hope that one day somebody will make the selfless decision to share the gift of life with him and that we will find the perfect match so that he can have a future.

ONE In A Million

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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.♥️

Pacemaker

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After fighting off a staph infection and adenovirus for 3 weeks Romeo was finally ready to get his permanent pacemaker fitted. Genetics and Neurology had requested an MRI of Romeo’s brain under the same anaesthetic to take place just before his pacemaker as once this is implanted he would never be allowed an MRI due to the magnets interfering with the pacemaker.

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.

The day we nearly lost you

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For a month now Romeo has been showing a few signs of worsening heart failure, I’ve been back and forth to our local hospital a few times regarding this. Every time they told me he was fine.

I hate that word “fine”, he’s not fine. I know my baby better than anyone else and I’m glad I stuck to my guns and fought for him. After he put on 7 ounces in one week (fluid retention) I decided to call our cardiac Liason nurses and they arranged for us to come in for a 3 day admission in Southampton. He has basically come in for a full MOT, he’s seen gastro, optometry, genetics and neurology but it took a while for the cardiologist to come and see us. I asked to speak to them and once again she said he’s “fine”, I disagreed and asked someone else to look after all the symptoms he’s been showing at home. They took a chest x-ray and his heart is very enlarged and finally his consultant agreed something is not right.

1 week later he had an investigatory cardiac catheter procedure, I signed the consent form, nothing too major on there other than risk of stroke. He went down to cath lab at quarter to 9 on the 27th of February, by 11am I started getting that sinking gut feeling something wasn’t right. About 15 minutes later the consultant came to see us to explain the findings. He told us that the pressures in his heart are very high he has a severe leak in his pulmonary valve and a moderate leak in his tricuspid valve. The pumping chambers are stiff and the collecting chambers are extremely dilated. He also mentioned his heart stopped twice during the procedure but with 10 seconds of chest massage he was okay. This immediately alarmed me, he said it’s uncommon but not unusual so I trusted what he said and we went round to recovery about 15 minutes later to collect him.

In recovery they were getting the trolley ready for me to jump on and hold Romeo to be wheeled back to the ward, he was extremely unsettled and I immediately knew he didn’t look right. As soon as he was placed into my arms I said to the nurse he doesn’t look good, his legs were mottled and I could see he was in a lot of distress. She proceeded to open his nappy to check his groin where the catheter would have gone in, as soon as she touched him he had a breath holding spell only this time it wasn’t just a breath holding spell, his heart stopped whilst he was in my arms.

He turned purple and floppy and completely unresponsive, the nurse said can we get some help round here and I screamed at the top of my lungs “HELP!” and they put the crash call out. I just put him down on the trolley and jumped off into Jimmys arms, all the doctors ran out of the cath labs to assist Romeo, they ushered us off down the corridor. I was screaming and crying and could not physically hold myself up, Jimmy had to keep hold of me as my legs had completely given way. Everything was a blur, I don’t know how long we were in there. I don’t remember who the people comforting us were, I don’t remember them getting me a chair or cup of water all I could think was please do not let our baby die! This wasn’t even supposed to be a risk in the catheter procedure, let alone in the recovery room with us there. How and why is this happening? What would have happened if this had happened in the corridor on the way back to the ward?

They took us back to the ward into the quiet room, I’m not even sure if they managed to bring Romeo back round or not by this point. The cardiologist came to see us, he said he’s okay, he’s screaming (this was a little white lie but it did reassure us) and they were going to take him straight back into the cath lab to place some temporary pacing wires. A little while later he came back and said he’s managed to place the pacing wires successfully but they needed to take Romeo to intensive care to wake him up there so it would be a little while before we could see him again. He also said in 27 years of his career he has never seen this happen, Romeo went into complete heart block in his left side most likely due to them touching something in his heart during the procedure and throwing off his rhythm but they were not 100% sure how this happened.

When we got to PICU I wasn’t expecting to see Romeo completely sedated and ventilated, this was a shock to the system, more so than after his open heart surgery. The doctor in the PICU was actually the doctor who resuscitated Romeo so she explained everything that happened. Initially I thought he only had a shot of adrenaline but actually he had everything, chest compressions, defibrillator, oxygen and a whole host of drugs to bring him back round. She explained that as he had 1 minutes worth of CPR it was unlikely that he would have suffered any brain damage but they have taken bloods to rule it out. They extubated and woke him up a couple of hours later and it was the biggest relief seeing my baby awake and alive!

The next day we got discharged from PICU back up to the ward in high care. When we left PICU they handed me the discharge paperwork and astonishingly enough Romeo arrested twice in recovery, once in my arms and another time after he was ventilated. Since Thursday Romeo is doing really well, he hasn’t used his pacing box once however he will be getting a permanent one fitted next week as they can’t rule out that it won’t happen again, he has finally managed some little smiles and giggles although today he spiked a really high temperature. I’m hoping this doesn’t come back as an infection as this could be extremely dangerous as currently he has pacing wires connected to his heart and if these let in an infection it could be critical.

The next plan is for Romeo to have his 2 valves replaced but this operation carries massive risks and will mean that he will need many more surgeries in the future for replacements. I think for now they want to do the pacemaker as a safety net and we will continue to manage his heart failure with medication until he is a bigger size for the valve replacement surgery to be a success.

If anything the last couple of days has shown us just how precious life is, just how strong Romeo is and that no matter what new diagnosis get thrown at us we just want our baby boy here with us! 🖤

A New Year

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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! ❤️

Behind the scenes

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We are all guilty of it, everything you see on social media is the best bits of our lives. But in reality there is a lot going on behind the scenes when you have a medically complex child.

So let’s start with the NG tube… gone are the days of worrying about having bottles and sterilisers taking up space in the kitchen. Having a baby who is fed through an NG tube takes up ALOT of room and equipment, plus a lot of the stuff is single use. So our first delivery was 28 boxes, 2 weeks later another 36 boxes. Now I’m lucky I have a garage which is now home to all these boxes, I don’t know how people do it if they live in a flat. I went out and got some box units to store in my kitchen which looks so much better than having a wall of cardboard boxes, these can be filled with the contents of about 10 of the boxes so eventually I will get through it.

Just a few of the many boxes
I highly recommend these for any parent with lots of medical equipment

Now the other thing with the NG tube is that it comes out, ALOT. This requires someone who is medically trained to put it in. Monday to Friday 9-5 is great, a nurse will come out to do it however that’s rarely the case. You see Romeo’s favourite time for his tube to come out is between the hours of 11pm-5am which involves a trip to the hospital. He has had his tube since the 18th of July, finally on the 25th of October I got signed off by the hospital to pass it at home myself. The benefit, no more early trips to the hospital but on the flip side it’s not the most pleasant thing to have to do to your own baby.

On top of what feels like a weekly tube change we have the plasters, these last about 2 days. Babies cry, they get wet, they peel off so you have to restrain your baby to replaster every other day.

And now comes the pump. Romeo has 7 feeds a day which take half an hour at a time. For 3 and a half hours a day he is attached to the pump, you can’t leave him unsupervised whilst the pump is running as if he starts to vomit there is a massive risk of the milk going into his lungs. For atleast an hour after his feed I also have to keep an eye on him to make sure he doesn’t vomit as since having the NG he is a really sicky baby. On a good day we have 1 big vomit, on a regular day we have about 3. Multiple changes of clothes for me and him and also multiple bedding changes. I have to keep on top of my washing all the time as we get through a lot of clothes and bedding.

So that pretty much sums up life with an NG, it’s not an easy task but it is vital. This tube that comes out of his nose physically keeps him alive, Romeo will just refuse to take any milk orally.

Stoma bags; these last for 2 days. Every other day I have to change his stoma. This really isn’t as bad as I had first thought it would be. Luckily Romeo isn’t rolling around everywhere so changing it is easy. I have only had one leak so far which I managed to spot straight away so a quick bag change and he was all good, it even leaked in the nappy so didn’t require a change of clothes. Again having a stoma means more equipment to store and another prescription to keep on top of, thank god for for those storage units I got!

Hospital appointments, doctors appointments, visits from the community nurses, trips to the pharmacy and endless calls to all of the above plus dieticians, SALT, surgical nurses and supplies companies. Anyone who has looked at the calendar on my wall can see how full this is. Every week our nurse comes out to weigh Romeo and a couple of times a month we will have some kind of appointment be it at the hospital or doctors. This is never ending but is part of our normal now and atleast we are getting out of the house which at sometimes can feel like the most difficult task.

If I plan on leaving the house, bam he’s been sick on me and him. Change our clothes, now his next feed is due and he needs to be attached to the pump. It’s a vicious circle and sometimes we just physically can’t get out. Now the anxiety kicks in… what if he’s sick in the car, is there a safe place to pull over? What if I don’t have enough spare clothes on me for when he’s sick? What if his tube comes out? Has his pump got enough battery in it? What if his stoma starts leaking, do I have all the stuff with me? It’s crippling sometimes, I feel like I’m imprisoned in my house but then I pick myself back up again and I just get on with it, I have to. I may come out with a million things in my bag but atleast it’s all there for just in case.

Due to all of the above Romeo is eligible for DLA which is a huge help as just because you’re in hospital, your bills don’t go away, you still have to pay petrol and parking for visits back and forth to a hospital which isn’t even local to you. It can get expensive. But the dark side of DLA is the form, 60 pages of you explaining why your child isn’t “normal”, it’s depressing it really is, but truth is my child needs round the clock care and I need to do it no matter how emotionally draining that form is. I can’t even get a babysitter as I would need to train people on how to feed him, how to change and empty his bag. My life has completely changed, my career will need to be put to the side for now as Romeo needs my undivided attention and atleast this is a bit of financial security for us for the time being.

It’s not easy, every day there is a battle but it is rewarding. Every victory, even the tiniest one can make all the difference. I hope this post has given you an insight into our daily life and to all my friends and family please don’t ever feel like I’m pushing you away if I cancel plans or have gone a bit quiet, chances are I have just encountered a little hurdle whilst just trying my best to look after this beautifully complicated child 🖤

CMPA

15

7 days. 7 days is all we lasted at home!

The first couple of days were bliss and everything we could have hoped for, it was like being back in that newborn bubble, feeling like you’ve taken your baby home for the first time.

But Romeo was still really sick, it was becoming more frequent. Changing bed covers in the middle of the night, not wanting to go any where in case he was sick. Going to the supermarket and having to embrace my top being covered in sick just so it didn’t go any where else in the aisle.

By day 5 he was really quite bad, he threw up every single feed and now he wouldn’t settle, at all!

In a 48 hour period the most he slept was half an hour at a time, he probably only had 8 hours out of those 48. Me and Jimmy would have to do shifts of staying awake with him through the night, trying anything we could to settle him. Nothing worked.

We were getting increasingly worried now. We had our cardiac review in Southampton the next day but we’re toying with the idea of taking him to hospital. But if we take him to our local hospital chances are we wouldn’t be discharged in time to get him to his cardiac check up but at the same time we can’t just roll up to Southampton in the middle of the night. We held out that night, it was torture and we had no sleep but it was needed.

As soon as we got to the Ocean Ward they saw how unsettled he was and did blood tests straight away, they somehow managed to do an echo although he screamed the whole way through. His heart was fine, his blood tests were fine but he was so dehydrated by this point and this definitely wasn’t helped by the heatwave we had. He was actually drinking bottles, draining the whole thing (something he hasn’t done in 2 months) although he couldn’t keep them down.

The next 2 days consisted of Romeo being fed dioralyte exclusively to see if his milk was the problem and by then he had perked up completely and not one single vomit. Everyone agreed he clearly had an intolerance to the milk.

He’s always been difficult, we have tried 5 different milks with Romeo and none ever seemed to agree with him. Either “reflux”, runny poos, him crying with bad belly ache. I often voiced my concerns about it on our last hospital stay but it was always palmed off as reflux.

Finally he was prescribed some amino acid milk as the dieticians agreed he has cows milk protein allergy and honestly it made all the difference, he is so much happier and no longer in discomfort. We were discharged again after 5 days in hospital.

So for all you Mumma’s out there, trust your gut if something’s not right. Keep hounding them and don’t let the doctors continuously tell you it’s just “reflux”

Recovery

14

Romeo spent 2 days in PICU, he recovered so well from his surgery. He was out of theatre at about 10pm and was extubated at 10am the next day, I couldn’t believe how quickly he was smashing the post surgery milestones.

It’s strange that first day after surgery you expect to see them hooked up to a ventilator in a coma like state. It’s so very different, they look like tiny drunk humans waving their arms and legs in the air whilst drugged up on sedatives. I took one video of Romeo like this, I wish I took more just to remember how it was.

The worst part is seeing them all puffy and swollen, they look like a different baby. I remember his voice sounding so hoarse where the ventilator had been and he let out a cry which just didn’t sound like him desperately trying to let a tear out of his swollen eye, it was heartbreaking. All you want to do is give them a big cuddle but with a chest drain, catheter, arterial line, central line, pacing wires, oxygen and heart rate monitors this was near on impossible. Holding him for the first time was scary but amazing at the same time, luckily we only had to wait 2 days to hold him again. I didn’t want to put him back down, I felt complete again.

He moved up to HDU from PICU and spent another couple of days here, he had a couple of hiccups on the way and just needed a little bit extra help to breathe to give him a bit of a break but other than that he did amazing, they are incredible little humans these cardiac babies. They really do bounce back after such a traumatic experience.

Day by day more drugs get weaned and more wires and tubes get removed. The withdrawals from the morphine are tough but it’s so worth it in the end, our end goal was to be wire free so we could take Romeo to see the fish on the ward and 6 days post op he was finally ready! 🐠

After 11 days we were finally discharged from Hospital, it was the best feeling just knowing we could take our baby home and spend some quality time together as a family. Just having Romeo back in his own bed asleep next to me was priceless and what I had been longing for so much after a gruelling 6 weeks.