The day of the surgery arrived a day that will be forever etched into my brain. Tuesday 15th September 2015 I sat by my boys bedside from 3:30 I wanted every second I could get with him before he had to go to theatre. I sat there watching him sleep wondering if I would ever see him again. I draw the curtains around his bed because I want him all to myself and I don’t want anyone to see me cry. The surgeon comes at around half 7 I’d cried from 3:30am and I still wasn’t done. I cried the entire way holding my baby boy in my arms carrying him to the operating theatre. I didn’t want to go in because I knew I had to leave him there and walk away, I had no choice it was that or eventually his heart wouldn’t cope anymore.
I laid him down and they gave him the anaesthetic and he fell asleep. I held his hand and kissed his head and told him I loved him. Now I’m not a religious person but I prayed that it wouldn’t be the last time I ever get to tell him that. I walked out and it broke me I cried harder then I had ever cried before. I didn’t want to leave my precious baby with strangers he needed his mummy.
By 1pm I still hadn’t heard anything, it had felt like days not hours. I wanted my baby back I needed to see he was ok. 1:30 pm came a knock at the door that the operation had gone well and as soon as picu were ready we could go and see him. I was so anxious to see him not at all scared my boy was alive that’s all I could have hoped for. I walked into picu and relief washed over me the machines didn’t scare me I was just so happy to see him I ignored all the machines and kissed him.
I couldn’t wait for my first cuddle with him after his surgery, he seemed so fragile I was scared of breaking him but I wanted my baby back in my arms. It had been days since I last held him and the moment he was passed to me it was like the first time I’d ever seen him just that rush of love came over me and I didn’t want to put him back down. After 4 days his character was coming back he was playing and smiling my boy was getting better. He spent almost a week on picu before going back to the ward.
It was an extremely tough time and I didn’t cope well my anxiety rose every time they shut down picu because of ward rounds and life threatening situations with other babies. You always thought to yourself “is that my baby?” Or “thank god it’s not my baby” It was so hard going between wanting to spend time with my eldest son and going back n forth to picu to see the youngest. I didn’t eat, I didn’t sleep that much I just went to and from each boy for a week before we were finally allowed home.
It was the hardest and longest 2 weeks of my life I had never felt so alone and out of control. I had never been so terrified of anything before in my life and nothing will ever come close to how I felt back then. I was so glad to be back home but my anxiety didn’t go away I still live with it 5 months on.
We get through 5 months of weekly and monthly checks with no issues it’s like it’s not real, it’s like he’s not got any issues with his heart. One day changes all of that. The nurse came to check his sats as usual but it’s a mix between the sats probe for tiny babies being too small and the probe for toddlers being too big. She goes to try another machine but the sats are 74% far too low the hospital said no lower then 85%. I start to panic and she tells me it’s gotta be a 999 call to go to hospital I grab as much as I can get expecting to only be in for one night he still seems fine. He wasn’t blue he wasn’t struggling to breathe. By this point I am on the phone to my mum in tears. Full on panic mode.
The ambulance turns up and the nurse has to go through everything and we are taken to our nearest hospital leaving behind my eldest son at home with my other half. Trying to explain what was going on when I didn’t know myself.
We are taken to triage they assess him and then take him to the children’s ward I’m given hope that providing the sats stay stable we can go home the next day. That wasn’t the case they only got worse and it meant we weren’t going home. More panic and more tears. I got no sleep the night before I wanted to be at home with my boys in my own bed.
We were transferred to the specialist hospital about 60 miles way from home and the cardiologist comes to see him and says you’re stopping in and he will be having his operation next week. I broke down and cried in front of everyone I wasn’t ready for this, I couldn’t cope with it and I wasn’t strong enough to help my boy through this.
The last 5 months had no where near been easy, I struggled every day with the impending operation. I coped alone for 3 months not saying anything to anyone how I really felt. I kept everything inside and it was eating me up. Eventually the outer me cracked and I had to let people in and open up to how I really felt. This was extremely hard to do but it finally meant the load was shared. As much support and help as I got I still couldn’t get my head around what was going on I couldn’t cope I cried so much but it was real his operation would be in a matter of days.
I’m new to this whole blogging thing and don’t really know where to start. So maybe the beginning would be a good start.
So really my story starts with the decision to have a second child something I always said I never wanted until I changed my mind. I had one son already and didn’t want him to grow up being an only child so we tried for a baby. I guess we were lucky in the fact it didn’t take long to conceive. At my week 12 scan everything was fine it came as a relief as a family member found at her 12 week scan the baby wasn’t progressing it was devastating. So thank god everything was ok with my baby. I had a gender scan at 16 weeks and found out I was carrying another boy. 20 weeks scan came along and everything was fine. So skip a few months and get to the birth.
I had my baby boy by emergency c section he was born at nearly 7pm as far as the doctors could tell he was born healthily.
The doctors came the following morning to do all the routine newborn checks it was then they heard the heart murmur. Apparently it’s quite common and mostly goes away after 24 hours except my little ones didn’t. They came back the next day heart murmur still present they then came a few hours later to do an ecg It was then decided they woud do an echo. Then came the diagnosis Tetralogy of fallot except I was so distraught I didn’t take any info in just “something wrong with his heart” we were allowed to go home luckily as they weren’t sure we would be allowed. I was told immediately that if there were any problems overnight to ring 999.
No problems occurred and the midwives came to check us both over Saturday morning the day after we got home I had to explain his diagnosis as best I could. We had to have a community nurse come once a week to check his oxygen sats and a health visitor come. He had to be weighed on a weekly basis as cardiac babies can fail to thrive. Not a problem my boy had he gained weight nicely, had no blue episodes he was as if he was a normal healthy baby. I was convinced they got it wrong.
At 4 weeks old he had his first appointment with a cardiologist I was convinced that it was all ok and he would be discharged but I was wrong. They explained in more detail his diagnosis
Tetralogy of Fallot (TOF).
A combo of 4 defects that cause oxygen-poor blood to circulate the body, which can cause the child to look blue, or called “blue baby”. The 4 defects include: pulmonary valve stenosis(valve is too small), ventricular septal defect (hole between lower two chambers), overriding aorta (aorta is shifted and receives blood from both lower chambers), and right ventricular hypertrophy (right ventricle muscle is enlarged).
This defect requires surgery and is sometimes accompanied by a genetic disorder such as DiGeorge or Down Syndrome.
There is no cure for this. Children with TOF will require life long follow up. Luckily he doesn’t have the DiGeorge or Downs as he had the genetic testing.
It completely threw me I had spent 4 weeks thinking everything was fine but he wasn’t. He had monthly cardiology appointments and weekly sats checks and got weighed weekly everything was fine in fact he gained weight like any other normal healthy baby would. He never dipped. He did the exact opposite of what the doctors said to expect. I was devestated beyond words it was incredibly difficult to take all the info on board. Open heart surgery at around 6 months old.