Labour

7

So after 3 attempts they finally broke my waters. It’s true what they say you leave your dignity at the door when you go into give birth, in the last 3 days I’ve literally had my vagina poked and prodded by about 10 different people.

It was an uncomfortable feeling but made better by the fact I could have gas and air however I didn’t feel that gush that people talk about, to be honest I felt nothing and still wonder to this day what it feels like when your waters break.

Now time for the hormone drip so they need to insert a cannula. First attempt “I’ve hit a valve” great what does that mean? “I’m going to try the other arm. Oh no I’ve done it again!” Third time lucky they have to get an anaesthetist in to find a good enough vein to insert the cannula. I’m finally up and running with the hormone drip and labour is starting!

It’s 8.30pm change of shift and Laura the midwife from the day before is back, it’s nice to have a familiar face again and I’m convinced she is the midwife who will deliver my baby.

The hormone drip is making my contractions really strong now, it should be 4-5 in 10 minutes but I was having between 6-8 in 10 minutes and they were intense. I am now crying and begging for an epidural, it’s been a long couple of days I feel exhausted and I can’t physically move as I’m strapped up to a heart rate monitor.

There must be a thing about 3rd time lucky as the first 2 times they inserted the epidural they hit a nerve, the whole left side of my body twitched violently, I almost felt like giving up with getting an epidural but I’m so glad she managed to do it right 3rd time. It’s a strange feeling not being able to feel anything waist down but the pain was finally gone!

Every time the hormone drip is put up the baby’s heart rate started dropping, the doctors came in to discuss it with us. They wanted caesarean to be a last case scenario as the time was going on I almost wanted them to just do it already.

5th April – It got to 8.30am and Laura’s shift was over, I was gutted I really thought he would come on her shift. The next midwife was Sian who was also AMAZING, she was due to examine me at 9.30am, I didn’t have high hopes for this as the last 2 times I hadn’t progressed from 4cm but I thought the end is near after this examination they would have to take me to surgery. “Do you want the good news or bad news?” Might aswell start with the bad and finish on a high. “Bad news is your going to have to start pushing, good news is your 10cm”. I honestly thought she was joking, finally this baby was on his way after 17 hours of labour and even better I didn’t need a c-section!

At 10.41am our beautiful Romeo was born weighing 4lb5oz, he screamed as soon as he came out and they managed to put him straight on my chest, Jimmy even got to cut the cord. I wasn’t expecting any of this I honestly thought he would be put on oxygen straight away and whisked off to NICU but after a quick check by the paediatricians he was all okay, already exceeding everyone’s expectations, our little fighter ❤️

Induction

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April the 2nd – I didn’t really know what to expect when we got to Southampton. I had my hospital bag in the car just in case but I kind of thought I would be going home that night, oh how wrong I was.

This was the first of 6 days spent in hospital. They scanned us and everything was as they thought from my hospital notes, the baby is measuring small and they needed to induce me as he is not gaining enough weight.

“Good news, we can induce you tonight!” Secretly I just wanted to have one more night in my own bed. But off we went to the delivery suite, they did the first induction but realistically nothing was going to happen that night so they sent Jimmy home until the next morning when they would examine me at 6.30am. I had to sleep in a labour bed, it was the worst nights sleep ever and I was so jealous of Jimmy getting our bed to himself.

April the 3rd – 6.30am and they examine me, nothing has happened so they do the 2nd induction. They have to leave so many hours between doing them but I thought today could be the day I have my baby, this is his birthday.. how exciting!

Hours have passed, many of which I have been strapped to the heart rate monitor not being able to move! We are now onto our 3rd midwife Laura she was lovely and by the evening time she examined me, still no change. Time for the 3rd induction.

After this as progress was really slow Laura had arranged our own room on the ward for me and Jimmy to both stay the night with our own beds. The last proper nights sleep I will probably have for 18 years.

April the 4th – Okay so today has to be the day surely, today is his birthday.

The doctor did not come round to examine me until late morning, I was so bored and fed up of being in hospital now and it didn’t help with people constantly texting and asking for updates when there was no update to give, this was a long drawn out process. Finally when the doctor examined me she said good news we can break your waters today we are just waiting for a delivery suite to become available. Finally it felt like something was happening. It wasn’t until about 3.30pm they took me down to delivery.

Further Scans

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I was back up at Southampton at the end of January this time the cardiologist scanning was Dr Black. He was happy with how the baby’s heart was developing, the diagnosis remains the same but actually at birth his condition will not affect him straight away therefore they were happy with me to have as normal birth as possible at my local hospital providing he was growing as normal.

I had no plans or hopes for labour and birth as I did not mind what happens just whatever is best for the baby.

We had further scans in our local hospital which were regular growth scans as I was now classed as a high risk pregnancy. The first one wasn’t great he was measuring on the 5th percentile. 2 weeks later we went back and he had put on an ounce. 1 ounce in 2 weeks surely that’s not good. He had now dropped of the percentile.

The consultant did not want to interfere with birth due to his heart condition so asked for me to be re scanned in 3 weeks, this would take me up to full term at 38 weeks.

The final scan, he is still measuring small so the consultant was called down whilst we were waiting they put me on the heart rate monitor to see how baby was doing (the first one of many)

After a while the consultant spoke to us she had arranged for us to go to Southampton for a further scan that afternoon as they were not happy with me now delivering locally as the baby had not gained enough weight and they did not know what to expect with him from birth. I suppose the important thing is that I deliver somewhere where there is specialists on hand should he need them and deep down I was glad, the last thing I wanted was to give birth and have my baby blue lighted to another hospital.

The Results

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December the 22nd – The longest 2 weeks ever. My anxiety every time my phone rang was through the roof. Not knowing whether or not if we were going to be delivered another shattering blow, it’s all I could think about every day and I was scared, really scared. The thought of Christmas was a write off all I cared about was knowing what lay ahead for us and the baby.

An emotional rollercoaster; this brought me and Jimmy so much closer together as we were the only people who were really going through this, now I know all our family cares and feels the impact too but this was OUR baby and only we can make the decision on what is best for us and the baby. We didn’t know anyone else in a situation like this so we really leaned on each other for support during the wait.


The phone rings, I can tell by the number it is Southampton. “Hello, we have good news the results have come back and your baby has normal chromosomes” I can’t even remember what else she said I just burst into tears with relief and immediately rang Jim to let him know. This was the best Christmas present ever, now we don’t have an easy journey ahead of us with his heart condition but atleast this was one less thing for us to have to worry about. As a parent you want the best for your child, I know we could handle it no matter what was thrown at us but this really was the best outcome for us.

Amniocentesis

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December the 10th – So after having the weekend to reflect on everything we had just been told we decided it would be best for us to find out for sure whether Romeo did have 22q. I called up the fetal medicine unit on the Monday morning and told them I would like to go ahead with the amnio, they had an appointment that day for 11.30 so I got myself ready and my mum took me down there.

The amnio consists of them scanning to see where baby is laying and where is best to take a sample of amniotic fluid they then insert a long thin needle into the womb and extract some of the amniotic fluid for testing every chromosone. The results of this can take 10-14 days, great that would literally take us up to Christmas. I remember being so strong whilst being there, inside I was screaming but I didn’t let out a good cry until I got home and was on my own.

Whilst there we discussed the “options” as I was now 22 weeks pregnant. Now this isn’t the nicest of subjects to bring up but I need to be honest and truthful; basically the legal limit to terminate pregnancy is 24 weeks however in cases like this they are able to do so later on but it needs to get sign off from several doctors. The procedure is injecting the babies heart to stop it beating and then being induced to give birth to it. This was heartbreaking to hear and I knew that I physically and mentally could never go through with that. This baby was given to me for a reason regardless of what health problems he may have he is still a life, my baby and I feel him kicking and moving around inside me every day. No matter what the outcome of the results I knew that this baby is here to stay and I will fight for him always.

The Diagnosis

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December the 7th – 2 days of worrying and fearing the worst, no matter what anyone says or how many times you are told it’s going to be okay it’s still scary. What if they do find something wrong with his heart?

We went to fetal medicine in Southampton, there were 2 doctors and a trainee in the room scanning us, it was interesting to see how much clearer this scan was compared to ones we had previously. After about 20 minutes of scanning the doctors took us to another room for us to wait for the cardiologist to come over from the main hospital. As she left us in the room she said she could see a small hole in the heart, to be honest this was best case scenario for us and automatically me and Jimmy felt slightly relieved. A hole in the heart can sometimes mend itself before birth or even after, this was nothing compared to some of the defects I had read about online. Whilst we were waiting we were in good spirits planning to pop into TGI Fridays for lunch after the hospital already planning what we were going to order.

Finally Dr Roman the cardiologist arrived and was ready to scan us. After 15 minutes or so they took us back to this room however this time there was lots of people in there; the 2 doctors, trainees, cardiac nurses and the cardiologist and the first thing they said was “We’re here to discuss your options”

OPTIONS! Immediately when you hear this you know something is seriously wrong. Every time Dr Roman explained something to us it was like a gentle blow gradually getting heavier and heavier.

He pulled out a picture of a heart, here is a normal heart and here is what your baby’s heart is like. Your baby has Tetralogy of Fallot this is made up of 4 defects; a large ventricular septal defect, over riding aorta, pulmonary stenosis and hypertrophic right ventricular wall. Okay so I have never heard of Tetralogy of Fallot but from this day on these words will forever be engraved in my brain.

So this is treatable with surgery usually when the baby is 3-6 months old, he can go on to live a happy healthy life but will need continuous cardiac follow ups and may need further surgery when he is older. Before surgery he may have cyanotic spells where he turns blue and runs out of oxygen as the oxygenated and de-oxygenated blood is mixing.

Okay so I know this isn’t the best news but it’s treatable and we can handle this, me and Jimmy reassuringly looked at each other.

However some babies with this condition have a genetic condition called 22q micro deletion, this is an extra chromosome. Now we have all heard of Down syndrome but this is one I have never heard of before. Babies born with this can have learning difficulties but the severity of this is not known till they are older. This is a whole different condition for us to consider, the heart is treatable but now hearing that our baby could have 22q which cannot be treated by surgery was a massive shock and something we were not prepared for. At the 12 week scan you have blood tests to check the fluid of the neck for genetic syndromes and ours came back fine so why are we only hearing about this now. The only way to test for this is either an amniocentesis or a blood test when the baby is born, now the amnio carries a 1 in 100 risk of miscarriage, considering our baby’s heart condition was 1 in 3000 this seems like pretty shit odds to us. We left that day with some thinking and hard decisions to be made.

The car journey home was a good 40 minutes but it felt like a lifetime we just sat in complete silence just trying to process everything we had just been told. I text my mum to tell her how we had got one, I was so broken inside I couldn’t physically talk to anyone about it.

This was all so much to take in, with pregnancy hormones already getting the better of me and now this I decided to sign myself off from work for a week to process everything.

20 Week Scan

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December the 5th – so technically I was 22 weeks pregnant when we went for our 20 week scan, I’m so impatient that we paid to have a gender scan a couple of weeks before this and we found out we were having a boy! This was one of the happiest days in my pregnancy, I’ve never seen Jimmy look so happy before. A son, every man wants a son. Someone to share his love of football with; another spurs fan in the making! ⚽️

I’m so glad we did this as our 20 week scan was anything but happy. I remember the day so clearly, it was pissing down with rain. There were no spaces left in the maternity car park so we had to walk in the rain from the main car park to the maternity building getting soaked!

Romeo was in an awkward position so they sent me off for a walk when we came back into the room to be scanned again I noticed they were spending a lot of time looking at his heart, it was at this moment I started to get that awful gut feeling that something was wrong. “It might just be the way he is laying and we can’t get a clear view of his heart. I would rather get a second opinion on this” the sonographer said. We were escorted to one of the quiet rooms in the unit whilst we awaited a midwife to come in and explain more. “We’ve referred you to Southampton for the cardiologist to have a better look at the baby’s heart, we don’t know whether it’s the way he is laying or if there is a problem with his heart so we would rather get a second opinion from the Fetal medicine unit there.” I burst in to tears, this was so vague I didn’t know what it could mean as far as I was concerned my baby was fine I had heard his perfect little heart beating in my 16 week midwife appointment and now I’m being told there could be a problem. Automatically you just fear the worst and when I got home that night sure enough I started googling the hell out of heart problems picked up in the 20 week scan, probably not the best idea but I just wanted to know there and then instead of waiting 2 days.

The Journey Begins

Intro

🖤 WELCOME TO OUR BLOG 🖤

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My name is Suzie and this blog is about my beautiful son Romeo and his battle with CHD.
At our 20 week scan we found out that Romeo has Tetralogy of Fallot, he had his full repair for this at 4 months old.  Unfortunately at 11 months old Romeo was diagnosed with Restrictive Cardiomyopathy, this is a progressive disease and the only cure will be a heart transplant.

This blog is therapeutic  for me to write my feelings about his diagnosis and journey and hopefully this will help other parents who find themselves in the same position as us. ❤️

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