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

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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

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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.

Stoma

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So going back to our first admission to Southampton, Romeo had thrush on his bum so the nurses would often be changing his nappies and checking it out when one of the nurses must have noticed something.

Completely oblivious whilst waiting for a date for his heart surgery a surgeon comes along to his cot, he introduces himself as a surgeon and automatically I just think great this is the heart surgeon, Romeo’s op will be soon. He starts asking questions about Romeo’s bowel movements since birth, I think it’s slightly weird but doctors always seem to ask about poo. So then he asks to examine him, sure I say.

He’s not examining his heart or chest though, he undoes his nappy and starts to examine his bum. This is when he tells me, Romeo has an anterior anus. I am in complete shock, this has come out of nowhere. With all the medical professionals who have checked over Romeo why only now at 4 months old is someone telling me there is something wrong with his bum.

This will require surgery, at the moment he is passing stools normally but as he gets older this is going to start causing problems as his anus is too high up and not in a natural position for him to pass stools.

I was devastated by this, to the point where I just couldn’t even tell anyone. I needed time for this to sink in, my baby has ANOTHER problem. He will require ANOTHER surgery. As if he hasn’t gone through enough already. Apparently anorectal malformations are linked to heart problems, once again Romeo would require more genetics testing to see if there is a chromosome abnormality causing his trio of defects. After a long 6 weeks these came back okay but still my poor little baby was going to have to endure more pain, surgery and recovery.

2nd October 2019 – Romeo went down for his op at 12pm, the anaesthetist took him from us in the theatre reception. I was gutted I couldn’t be there to hold his hand whilst he went to sleep. I know this op isn’t as major as his heart surgery but it’s still tough knowing that your baby is laying there being cut open. We didn’t know how long this op would go on for as they weren’t 100% sure if they would need to go ahead and give him a stoma. The hours started ticking by and I knew that they were most definitely going ahead with the stoma. We got to go to theatre recovery at 5pm to see Romeo. He was so calm; must have been the morphine, but it was nice to see that he wasn’t in pain.

The next day Romeo slept most of the day, which is good he needed to recover. The stoma nurse came round to see us and showed us how to change his bag, it really isn’t as bad as I first thought it might be. That evening I noticed Romeo’s work of breathing was bad, his chest was really recessed with every breath he was taking and he was breathing fast, really fast (92 breaths a minute). I asked the doctors to check him over, his chest was clear so they couldn’t work out why he was like this. He also started swelling up all over, now I started to worry as swelling can put a lot of pressure on his heart. He had a chest x-ray that night but it was all clear. The next day he was getting worse, more swollen and faster breathing. By now the nurses looking after him were starting to get worried. I demanded that they get a cardiologist to check him over, after waiting 6 hours the cardiologist came and did an echo. Thankfully his heart was fine but no one could understand why he was breathing like this. They increased his diuretics to reduce the swelling and I asked the doctors for him to be put on high flow oxygen just to help with his breathing, they agreed and luckily over the next 3 days he was back to normal.

Over those days I was now emptying his stoma myself, it’s a bit smelly but really not that bad and not as frequent as changing a nappy. The stoma nurse came round another 2 times and I changed the bag with her observing. I now feel confident with it and we were discharged after a week in hospital.

So far so good, no leaking. Time will tell how I get on with it but this isn’t permanent. Thankfully once his bum is fully recovered his stoma will be reversed. The way I look at it is it’s just another way to poo, just like he has another way to feed and it’s another string to add to my bow as a nurse mum.

I didn’t know if I would ever really share this story, I almost felt a bit embarrassed about it at first. In denial. But what is there to be ashamed of, my baby is special. He’s been through 2 ops in 2 months, this is part of his journey. He is an incredible young man and been through more than most adults have in their life, I’m so unbelievably proud of him ❤️

Surgery

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At 4pm on Friday the 9th of August we carried our baby down to theatre. He didn’t have a cannula in yet as he is notoriously difficult to get a good vein, just like his mummy. After about 10 blood tests in 3 weeks most veins were ruined by now.

We went in to the room with him while they put him under anaesthetic, the anaesthetist was a lovely guy named Mike and he made me and Jimmy feel so relaxed. He held the gas mask above Romeo’s face whilst I held his hand, it took ages for it to kick in, to the point where Mike had to put the mask to his own face just to check it was working. 5 minutes later Romeo was asleep, he went so peacefully and didn’t put up a fight at all which was more reassuring, it would have been horrible to leave him knowing that he went to sleep in distress. After we left him they would put in a cannula and a central line to administer the full anaesthetic.

Now came the long wait, his surgery was expected to last atleast 6 hours and Mike said he would ring the ward at 8pm to let them know how they were getting on. We didn’t want to leave the hospital grounds really but decided to go to the nearest shop to get some food. This was my first time in a supermarket in about 3 weeks and it felt good to feel a bit of normality, we decided to eat away our worries and just bought a load of shit food like sweets, crisps and chocolates just to get us through the next couple of hours. For about half an hour it was like our worries went away for a bit but it’s still in the back of your head that your baby is laying there whilst a surgeon repairs his heart. We went back to our room in Ronald McDonald house and ate, I read a book and Jimmy was probably watching football videos. Romeo was wearing a pair of socks when we took him down to theatre and Jimmy took them off whilst he was going under, it’s the best thing he has ever done. We spent the remainder of the time just constantly sniffing these socks as they smelt like Romeo.

It finally got to about 8pm so I decided to ring the ward for an update. “They have said they are expected to finish surgery at 10pm, the surgeon will be up at about 9pm to see you.” This was reassuring, surely everything is going well and they are running on time. We head back up to the ward and wait in the quiet room, now every footstep I hear I am on edge, is this the surgeon coming?

Finally at 9.30pm the surgeon comes in to see us, he has a smile on his face. This is the best feeling ever. “Everything went well!” That’s all I needed to hear, finally my baby is safe! They did a lot in that space of time, Romeo had an ASD and a VSD which they have put a patch in, his pulmonary valve they have managed to cut across and extend but this will need a full replacement, maybe in 4 years, maybe in 60 years but most likely when he is a teenager. The right side of the heart was extremely thick so they managed to cut away a lot of the extra muscle and his tricuspid valve they managed to do a complete repair. This was leaking severely and had caused congestion in the vein to his liver, they didn’t think they would be able to completely stop the leak but they are miracle workers and now there is no leak out of this valve and hopefully in time his liver function will be back to normal.

I don’t think I could ever thank him enough for what he has done for Romeo, he truly is a life saver. Thank you Dr Laverson and Mike the anaesthetist we will forever be grateful for everything you have done for our son!

At 11.30pm finally we were able to see our baby boy in PICU ❤️

The hospital bubble

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Exactly one month ago today I took Romeo to the GP, he wasn’t himself. He was crying constantly, was missing about 2 bottles a day and just impossible to settle. The diagnoses… colic. Now I know my baby boy and this wasn’t just “colic”, something was up with him. 2 days later I had text my nurse as I noticed he had thrush in his mouth and was starting to get really concerned about his feeding, she told me if I am really concerned to take him to the children’s unit in our local hospital. I took him there expecting to go home that night with some medicine, oh how naive I was.

They agreed he needed to have an NG tube fitted as he just would not take a bottle, we were then expecting to be in a couple of days until he had established feeding again.

It’s just thrush, it’s just a cold, he has had a viral infection, it’s the heat. They were trying to rule out everything until 5 days later when a student nurse was on shift. She noticed his head bopping whilst breathing which is symptomatic of respiratory problems. She must have told the doctors and thank god she spotted it, within a couple of hours he had a chest x-ray and an echo which confirmed his heart was enlarged. Knowing his condition I don’t know why it took them 5 days to check his heart and it makes me so sad to know he was struggling for that long without anyone picking up on it.

The next day we were taken by Ambulance to Southampton General Hospital, to the Ocean Ward where they specialise in paediatric cardiology. It was now obvious that we wouldn’t be leaving until he had his open heart surgery. The emotions hit me like a tonne of bricks once we got there, suddenly I am surrounded by really sick babies and children. Everything was a whirlwind and it all started to feel more real the gravity of Romeo’s condition.

The doctors do their rounds every morning, Romeo had a couple of outpatients appointments before but had never actually been seen by his named cardiologist, luckily that week he was the cardiologist on ward rounds. He took one look at Romeo and said he would need his surgery very soon within the next couple of weeks. He’s 4 months old and only weighs 9lb, this poor kid has been struggling for a while. He needed to be a certain weight for surgery, but could never realistically get to that weight because he needed surgery.

They have multidisciplinary team meetings every Monday, Tuesday & Wednesday. We arrived on a Wednesday so he wouldn’t be discussed until the next week. In hospital you come to realise the weekends are nothing days, no one is around and absolutely nothing happens which means no progress. It’s strange in real life your working week you are wishing away, in the hospital bubble you are wishing away the weekends just so you can start moving forward again.

The next week comes and now they have found a few more issues with Romeo outside of his heart, they arrange for an ultrasound to be done on his liver, kidneys and spine to rule out more related problems. This now pushes us back another week as this was not done in time for him to be discussed in this weeks meeting.

After another long weekend I’m excited it’s Monday, they will definitely discuss him and we are going to get some answers. “Do we have a date for surgery yet?” I ask the doctors. “Between me and you, he will be going down on Thursday but we will let you know for sure by Wednesday”. I feel excited knowing that finally my baby boy is going to be fixed, he desperately needs this surgery but at the same time it is the scariest thing we will ever have to go through. The surgeon is going to stop my babies heart and stick him on heart/lung bypass whilst he sews it back together, it’s the most horrible thing to imagine just picturing your baby laying on that operating table.

Wednesday comes around and we now meet the surgeon, we sign the consent form which feels like I am signing my child’s life away and then we shake the hand of the man who is soon to be holding my babies heart in his hands. I want to spend every minute of the day with Romeo, cherishing every second and enjoying his last proper bath. Thursday morning comes around, I am back up at the hospital at 7 in the morning, again wanting to spend every single second with him. Today is his big day, he is second on the list and I notice the first little boy didn’t go down to theatre until half 9. I thought this was a bit late as I know his procedure is really complicated, but still I am hopeful today is the day. The anaesthetist comes to see us around lunchtime and I am sure it’s still going ahead. At 3pm the liaison nurses started getting a bit concerned, time was ticking by and still no word from theatre. 10 minutes later the nurse in charge comes in to see us, “I’m so sorry, theatre have just rung and they have cancelled Romeo’s op today. The surgeon is going to be too tired.”

Yes I don’t want a tired surgeon carrying out an operation like this on my baby but I have literally been on an emotional rollercoaster all day long, every sound of a trolley I think is a porter coming to get Romeo, every time I see someone in scrubs I think they are coming to collect him, I have been on edge all day and now I feel like we have taken a massive back step and are now going to have to go another week without a date for surgery. Later on that evening the doctor came round to see us and told us we were now on the list for tomorrow, we were still second on the list so there was a high chance the same thing was going to happen to us again.

Friday morning I felt a lot calmer, it felt like Groundhog Day but we had been through all the emotions already. I felt like if it happens it happens but I’m not getting my hopes up. The little girl who was first on the list went down a lot earlier than when they started the day before, this felt like they were heading in the right direction this time but then it started getting to about 2pm, they had already started sewing seeds in my head at this time the day before that surgery would be cancelled so I started giving up hope. At 2.30pm one of the doctors had come out of theatre, he said the surgeons were all up for Romeo’s op and felt a lot better than the day before and that they would be ready for him in an hour.

Coming up to 3 months

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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 ❤️4458B589-DFA7-4974-B775-E35E42E506AE65049919-F5AE-485C-B112-25E5C75486D6

Feeding

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When you have a baby with medical conditions you need to be open minded about feeding. I honestly did not know what to expect with Romeo, would he be put straight into NICU when he was born? Would he need a feeding tube? Would he tire to much from feeding from the boob?

Ultimately I wanted to breast feed after all breast is best! When Romeo was born the midwife tried helping me to get him to latch but he couldn’t his mouth was just too small. I hand pumped and used little syringes to get the milk in his mouth the first couple of times. As I spent 3 days on the ward after birth I had midwifes on hand to help me with breastfeeding and no one could seem to crack it, he just couldn’t latch on so I had to use the little bottles of Aptamil and topping up with syringes of breastmilk on the side. This was hard though my breasts weren’t producing enough milk, there was one night I had just managed to hand pump a couple of mls into a pot, Jimmy sucked it up in the syringe and then accidentally squirted it all over me. I needed to get out of hospital and start expressing properly this was hopeless.

Once out of hospital I finally got a pump but finding the time to sit and express as well as bottle feeding, changing and sleeping was hard. Romeo was struggling with the bottles as well, we have tried most of the bottles and teats out there and the first week or so it was taking over an hour to get him to take a bottle. I kept trying him on the boob but he just couldn’t do it, this would frustrate him and me.

Now I know people think they are trying to help you by giving advice about breast feeding, you should try this and try that but the truth is when you have been trying and trying there is nothing worst than having someone patronize you by saying try this. The day that my milk dried up I cried, I felt like a failure. I am a woman, I have given birth to a baby, I have produced milk to feed my baby but I have failed and now my milk has gone.

“Have you given up on trying to breastfeed now?” – honestly this is the worst thing you can say to someone who’s baby wont latch. It’s not that I have given up, it just doesn’t work for us and that’s okay. I am no less of a mum or a woman because I haven’t breastfed; the most important thing is that my baby is feeding, yes bottle & formula wasn’t my first choice but he is getting chunky and putting on weight and that is all that really matters.

Hearing Screening

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When Romeo was first born his right ear was basically non existent, completely squashed into his head. I asked the midwife, this will pop out wont it? She told me yes most babies are like it, its just where they are all squashed up when they come out.

Whilst we were in hospital Romeo had his first hearing test, that came back okay in the right ear but no clear response in the left ear. We were surprised as we would have thought if anything they wouldn’t get a clear response out of his small squashed up ear. We weren’t concerned at this point as a lot of the time it is just a build up of fluid in their ears from birth.

At 5 days old they repeated the hearing test and again couldn’t get a clear response so they referred us to the hospital that afternoon. This time he had an ABR where they test the receptors in the brain. They tested both ears again this time and now there was no clear response in either ear. Now we were starting to worry and wondering was he even reacting to noise? The poor little boy has enough battles to face let alone not having his hearing as well. Over the next couple of weeks we were checking every time there was a loud noise to see if he reacts and it wasn’t reassuring, he didn’t seem to be reacting to anything.

The thing that upset me the most about this was knowing that my little baby would be going in for open heart surgery in a couple of months, he will be placed in a medically induced coma whilst he is placed on life support to give his heart a chance to recover. We won’t be able to hold him, the only thing that could possibly comfort him is our voices and what if he can’t even hear that?

A couple of weeks had passed and we started noticing him reacting to certain sounds; the sound of a can opening, the door shutting. This was starting to look promising and by the time his audiologist appointment came around I had hope that whatever it was that was preventing him from hearing had passed.

He passed in his right ear at the audiologist appointment however in his left ear he can only hear above a whisper. They wanted to see if this would improve and we went back a couple of weeks later. It was the same result, he has full hearing in his right ear but partial deafness in his left ear and can only hear certain frequency’s out of this ear. We will go back when he is 8 months old and can sit on his own and turn to sounds to see what the next steps will be.

To be honest the partial deafness we can deal with, that first day at hospital when we thought he could be completely deaf was heartbreaking, every thing feels like a small victory when you have imagined the worst.

Our First Month

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I ended up staying in hospital for 3 days with Romeo, by the end of it I couldn’t wait to get out of there and just take him home; although the help I received from the midwifes on the ward was amazing, you just kind of want to get on with it yourself.

Being a first time mum is hard but being a first time mum to a baby with a heart condition well that’s even harder. There’s no instruction manual for babies, you can read books etc about them and what to do but when you have a baby with a serious heart condition and no one else around you who has been through it, that was tough. I was scared to even let him cry for longer than 2 minutes, what if he runs out of oxygen and has a TET spell? What if he’s not putting on enough weight, tiring from feeding and needs and NG tube? These are all things I have to consider now.

As I’ve got to know Romeo I know he is one tough little cookie and a lot more resilient than you first think, I can leave him for longer than 2 minutes to have a cry, hes a baby thats what they do… Eat, Sleep, Poo & Cry.

I felt more reassured after going to his first cardio appointment on the 29th April, his Echo and ECG came back fine and all as expected from my scans when I was pregnant. At the moment his sats are good and the pulmonary valve is a good width however as he gets bigger and his heart grows his pulmonary valve will get narrower and that is when the cyanosis can start. The target weight for surgery is 7kg, Romeo is 2.5kg he still has a long way to go until they can fix his little broken heart.

Our first month has been good, hes putting on weight like he should and I feel like I really know Romeo inside and out now. I know what his little cues are and if he is hungry, pooped or just needs some cuddles. We even survived Daddy going back to work and it just being the two of us. Being a parent is tough but it really is the most rewarding job there is and its true what they say, there really is no love like it.