Reading 

Reading back through some of my blog posts at the end of last year I realise how much of a dark place I was in. Reading the things that went through my mind on a daily basis. We’re almost 8 months into this year and already things have dramatically improved for me. 

By the end of April I got my wish of being depression and anxiety free after I got through counselling, I got my eldest son’s autism diagnosis. I re connected with my mum and younger sister. I think once my thought pattern changed, I realised I was never going to change them. If I was never going to change them why bother trying? I made more effort and in turn they did too. They accepted my children are different and made more effort with them too. I see them on a weekly basis now, there’s more communication between us. 

My life has improved no end since April. Hearing the news I had waited 2 years for finally freed me from the weight of feeling so shit. I love how my life is and it’s not perfect it’s still hard work but I don’t hate my life. I don’t think about clothes 3 days in advance. I don’t hold back on what I say anymore afraid of hurting people’s feelings or them not liking me anymore. 

Things are heading in the right direction. I’m starting to understand my children more. My 6 year old with his needs and wants and how he has to do things his way, I’m teaching my youngest son makaton, he’s copying things we do when we teach him. He started walking 3 weeks ago and he’s got such a funny character to him. 

Life is what you make it, you can cry, kick and scream that you haven’t got perfectly healthy “normal” children or you can grab life by the bollox and say I’m doing a bloody good job at raising my children each with their own individual extra needs. Things can only go forward from here. No more looking back. ✌🏻

Chd awareness

Tetralogy of Fallot (TOF) is a congenital heart defect that is present at birth. Symptoms include episodes of bluish color to the skin. When affected babies cry or have a bowel movement, they may develop a “tet spell” where they turn very blue, have difficulty breathing, become limp, and occasionally lose consciousness. Other symptoms may include a heart murmur, finger clubbing, and easy tiring upon breastfeeding.


The cause is typically not known. Risk factors include a mother who uses alcohol, has diabetes, is over the age of 40, or gets rubella during pregnancy. It may also be associated with Down syndrome. Classically there are four defects:

a ventricular septal defect, a hole between the two ventricles
pulmonary stenosis, narrowing of the exit from the right ventricle

right ventricular hypertrophy, enlargement of the right ventricle

an overriding aorta, which allows blood from both ventricles to enter the aorta

TOF is typically treated by open heart surgery in the first year of life. Timing of surgery depends on the baby’s symptoms and size. The procedure involves increasing the size of the pulmonary valve and pulmonary arteries and repairing the ventricular septal defect. In babies who are too small a temporary surgery may be done with plans for a second surgery when the baby is bigger.Most people who are affected live to be adults.Long-term problems may include an irregular heart rate and pulmonary regurgitation.

TOF occurs in about 1 in 2,000 newborns. Males and females are affected equally. It is the most common complex congenital heart defect. It was initially described in 1671 by Niels Stensen. A further description occurred in 1888 by the French physician Étienne-Louis Arthur Fallot, after whom it is named. The first surgical repair was carried out in 1954.

Wording taken from Wikipedia 

World Heart Day

Some Bonds Cannot Be Understood ❤️
Some bonds cannot be understood…

Unless you have walked them before… 

A path that I would not have chosen… 

A future I just can’t ignore.
We’ve all watched our children intently… 

Memorizing each line… 

And let them leave our loving arms… 

And prayed things would be fine. 
We’ve paced the halls awaiting news… 

And wondered just what lie in store… 

We’ve felt our own heart’s racing as… 

We walked through an PICU door.
We’ve seen the child we love so much… 

Struggling to overcome… 

The lines…the cords….the monitors… 

No thoughts…no words…would come… 
We’ve prayed for an improvement… 

We’ve laid it in God’s hands.. 

We’ve cried…we’ve hoped…we’ve worried… 

We’ve wondered of God’s plans. 
We’ve learned just how a heart works… 

Each valve and artery… 

We’ve asked alot of questions… 

We’ve faced each surgery. 
And somewhere down this well worn path… 

We’ve met more families… 

Who know exactly what it means… 

To live with this disease. 
We’ve smiled at every triumph… 

And shared in every sigh… 

We’ve prayed for a child that struggles… 

And each family that must say goodbye. 
Some battles are fought with bullets… 

And weapons made for war… 

While these are fought in silence… 

Behind a hospital door.
We’ve wondered what lies in our future… 

We’ve been thankful for just one more day… 

We’ve stopped and watched with tear-filled eyes… 

Our children…as they play. 
We’ve struggled with ounces and weight gain…

Why won’t my child just eat? 

But heart parents …we’re a tough group… 

We’ve learned how to face a defeat. 
We’ve faced those moments…others do… 

When life has got us stressed… 

But it doesn’t take long to remember… 

That we are richly blessed. 
We’ve taken on a whole new role… 

One we wouldn’t exchange if we could… 

We know that life is difficult… 

We hold onto all that is good. 
God chose each of us carefully… 

I do believe he smiled… 

Some bonds begin with strangers… 

And each very special child ❤️

Final draft 

After the call last Tuesday from the charity I mentioned I received the final draft via email this morning. I know there’s hardly anyone that gets what a big thing it was for me to share my sons story but I’m proud of myself. It was hard and emotional telling it but I hope that it can provide some comfort to another family dealing with what I dealt with. 

Here’s the final draft obviously for my privacy I’ve removed names and any personal details inline with my blog. 

Or’s story K already had a son, O when she and her husband decided to try for another baby. They had no trouble getting pregnant and the nine months of pregnancy passed without incident. In April 2015, little Or arrived by emergency caesarean section and seemed perfectly healthy. However, the next day, during Or’s newborn tests, the medical team noticed a heart murmur. Although relatively common in newborn babies, Or’s doctor decided to investigate further they did an ECG and Or was sent for an echocardiogram later that day that revealed he had a congenital heart defect – Tetralogy of Fallot. K was in complete shock and couldn’t take anything the doctors were telling her in. Her little boy had been feeding well, his colour seemed fine – she couldn’t believe this was happening to her baby. Why Or? K blamed herself – thinking Something she had done during pregnancy caused Or’s condition. Tetralogy of  Fallot usually does not require immediate surgery, so Or was sent home from hospital and began to settle in with his new family. His first cardiology appointment was at 4 weeks old. It was during that appointment that she was told the full extent of Ors condition and that it required open heart surgery at around 6 months old. K was warned to keep an eye out for any signs of heart failure – colour change, lethargy and rapid breathing. They had regular check-ups – and one month before Or was due to have surgery, at 5 months old, The community children’s nurse noticed that Or’s oxygen levels were dropping. Immediately blue-lighted to their local hospital and then, after a further drop in oxygen levels, to the regional cardiac unit , Or was beginning to turn blue and was breathless. His heart was beginning to fail. Five days later, when he was strong enough, Or had open heart surgery to correct the defect. It lasted 5 hours. Finally K and Her husband were told that it had gone well, and that they could come and see their baby boy. The relief that K felt was so strong that it overrode any pain and fear she felt at seeing her little boy hooked up to machines. He was alive, and that was all that mattered to her. After a week in Intensive Care, Or was transferred up to the ward, and 8 days after the operation he was discharged from hospital. K felt elated. She couldn’t wait to get home, back to normal and back to her own bed. That was 1 year ago. Despite a few small issues since then, Or has gone from strength to strength. K says, “We were so lucky. If the newborn checks hadn’t been done so thoroughly, and if the ECG machine hadn’t been on site, our story may have been very different. Or is a cheeky, mischievous and very observant little boy, and he utterly adores his big brother, O. The work of T T is so important to find babies like Or. The earlier these defects are picked up, the better for the baby and their family. I am so grateful that Or was given the chance to fight his condition.”

Still feel emotional reading this even though I’ve read it over several times. I’ve written this story myself in my very first couple of posts but this is written by someone else as told by me. 

CHD and what it means 


http://www.scribblesandcrumbs.com/2015/01/12/10-things-you-need-to-know-about-congenital-heart-disease/
I read this on Facebook and it brought tears to my eyes. It’s a re order that CHD children and babies are so incredibly special. They all share that little faded scar down their chest known as a zipper scar. 


Sometimes it’s hard to remember that little scar inadvertently saved my little boys life. It’s a scary thought. It’s getting incredibly close to his heart anniversary. And I start thinking back to the scariest and most worrying time of my life. I’m grateful he’s still here more then anyone will ever know, I look at that scar and remind myself of what he went through and realise I’m so incredibly lucky. Many CHD mothers haven’t been so lucky they lost their little angels to something that couldn’t be defeated. I am reminded every day of to struggle he’s had over his life and he’s only nearly 16 months. I feel so envious and jealous when I see younger babies crawling, rolling over and walking. All the things he could have been doing by now if it weren’t for his heart defect and his open heart surgery. Every little milestone not important to anyone else is huge to me. I know some people don’t get it and they don’t share my excitement. My baby boy stood unaided for like 5 seconds today something that made me so incredibly happy and proud but who do I tell? Why share it? It’s not a big deal to them like it is to me. 


It’s a lonely world of the possibility of a cough being a chest infection rather then just a cough, infections being picked and treated asap, its infections every few weeks or months, it’s trips to a cardiologist once a year. Physio every few weeks and people asking if he’s crawling yet. This is easy compared to what it was this time last year. It was weekly sats checks, monthly  hospital visits and weekly weigh in’s on top of everything else. Some parents don’t know how lucky they are have to have healthy children they take it for granted and ignore their kids in favour of mobile phones and websites and sitting and chatting rather then interacting with their child. Sometimes I wanna scream it to the top of my lungs everything my little boy has been through but neither of us need pity. I don’t want people to pity him and ask questions which is why I keep it quiet. 


That article published last Sunday I’m thinking and hoping no-one I know from baby groups saw it. Because once they know it’s out there and it’s staying on there. They ask too many questions as it is and they don’t know anything. I like my life being private. Other shout about their problems I choose to blog. 

Local news


During a mad moment on Friday night I emailed my local newspaper and shared my story about the closure of Glenfield hospital. To my surprise they actually published it. I am extremely nervous it’s the first time it’s public knowledge about my youngest boy. I’ve kept things relatively private keeping things between friends and family. I’ve never gone public until now. I’ve shared it on my Facebook wall but I’m I totally regretting it thinking people will see it as attention seeking. Thinking people I didn’t want to find out will know once it gets shared along the Facebook route. I don’t want pity for him and I don’t want to have to talk about it to anyone else. It’s in the past and if Glenfield weren’t under threat the article wouldn’t have been published. 


I’m not an attention seeker I kept things to myself for 5 months telling no-one outside of family and very close friends about his heart defect. I didn’t go posting everything on Facebook I create a new account and only added close friends and family to it to keep them informed of progress etc. The first time I posted on my normal account was the night before the surgery. Even then I didn’t go into details. 


It’s had a couple of positive responses from friends but it’s the ones that’s do say anything silently judging me for sending the story in. Fuck them they didn’t live through it I did. They didn’t see their 5 month old baby on a ventilator helping him breathe or being under sedation for days. They didn’t have their 5 month olds heart repaired. I did. So I shared my sons story and I hope people are inspired by it. They can save their pity for someone else my baby boy don’t need it. 

In other news my youngest boy now 5 months can bum shuffle round in a circle and he stated to try and pull himself up on to legs in the bath. Nothing stops this boys I cousins be any more proud of him. Today with the help of the sofa and his dad he stood up for a minute. Such an amazing moment for me as his mummy. My family don’t really get the meaning of this and how special it is to us. To them it’s not important to me it’s made my day. He’s coming on so far he’s amazing bless him few more months and the boy will be off and there’ll be no holding him back then. ❤️

A year ago

A lot has happened in a year. A year ago I was struggling with everyday life having a 3 month old baby with a heart defect the impending surgery and the fact my eldest was leaving nursery. I went to a baby group at my sons nursery I’d been going for 6-7 months while I was pregnant. The nursery manager was a friend and she had helped me when I found out about the surgery and the heart defect to the full extent. 

The six weeks holidays were starting a year ago today that’s when I couldn’t cope any longer. I couldn’t carry on bottling up my fears and feelings anymore. The health visitor had been to see the little one at the baby group and weighed him. No issue with his weight and I kept it together until she had gone for a meeting in the nursery office with another parent. Then the community nurse came to check oxygen sats i’d built up a bit of a relationship with her frequently asking questions and nothing  was ever too much for her. All she said was “you look more worried this week” with that I was in floods of tears. I talked through my fears with her and she re assured me but it didn’t help this time. During the holidays i’d be alone no baby group no support network. I was scared how I’d cope I was alone and terrified. 

The nurse left and I was still clearly very upset, the health visitor came out of her meeting and saw the state I was in. I’d never confided in her before, I was always fine. I didn’t know what help she could give even if I had spoken to her sooner. She came and spoke to me and she put a referal in to a charity called Home Start.

 A week later a family co ordinater came and visited me at home. She was lovely. she listened to everything I had to say while I told her everything that I was going through. They have been amazing to me. I had weekly visits from the lady I met and she organised me a volunteer to offer emotional support. In honesty I don’t know where I’d be without them being involved with my family. I couldn’t have coped if it weren’t for them, they have been in my life for a year and now I know I have that support I use it. They are there every time I have a break down, I need help, I need someone to talk to. They never judge me. They are so incredibly supportive I can’t be more thankful to them. 

They helped me when my little one came out of hospital which was only a few short weeks after they started their support. They helped me with settling my eldest into school and his investigations into autism. They have come to appointments with me, wished me luck for hospital visits and come to counselling sessions with me. They helped me with my depression and anxiety and helped me with the fear of leaving the baby. They have provided no end of support that my family didn’t. They still provide support a year later, someone to talk to when things get too much, someone to go to various appointments and support anyway they can.

I would honestly say my life has improved since they got involved and started supporting me. If you need any kind of support I’d suggest you look up your local Home Start office they could change your life too.