#bigkidsforgosh

I am sitting on the sofa with C Beebies blasting out and I look to my right, I feel a little hand grab  mine. Elijah looks up at me and says, ‘Mummy’.

This is one of those things that happens about a hundred times a day, but now and again I really take stock of them. I sweep his fringe out of his eyes and give him a little hug.

There was a time that I may not have ever been able to do this. To be able to raise my (nearly) two-year-old as a normal, happy and healthy little boy. He may not have even be here at all.

I am only able to do this because of Great Ormond Street Hospital.

After Elijah’s diagnosis of Tetralogy of Fallot at birth, after his admission to NICU we had always known he needed open heart surgery to repair his heart. To put it simply, to save his life.

Being a mother to Elijah means everything to me. GOSH saved my family.

It was scheduled to be around the 6 month of age mark that he would have this surgery, from the latest consultant appointment and surgery meeting it was now looking like 9 months.

I couldn’t wait any longer so we contacted the most helpful and understanding lady in the Cardiac booking office at GOSH. She made us an appointment to come down for pre admission and be put on the cancellation list. If a surgery spot came up, we would go down quickly. It didn’t however happen like that.

After going down for all of the routine pre surgery tests, we left with a surgery date for two weeks’ time. The staff, surgeons everyone we met were so nice, so helpful and really tried to make this process as easy for us as it could be. Even when Elijah’s surgery got cancelled 30 minutes before he went down to theatre. They brought me nappies, milk and you could tell how guilty they all felt for sending us home. They even paid for our trains back to Norwich.

The train journey back after the surgery was cancelled.

Surgery was rescheduled and the whole process was repeated two weeks later. We stayed in the same hotel we had done previously, as a family again the night before. At 7am we walked across the road and this was it the surgery was going ahead. The nurse we had from the very start stayed with us, walked us to theatre and even stayed with us when Elijah was being put to sleep. She hugged us, she supported us but most of all she generally cared about us.

I have written lots about how hard it was when Elijah had his surgery but GOSH really were amazing. When Elijah came out of surgery and into intensive care the nurses let me ask lots of questions, they also respected me when I didn’t want to talk at all. They didn’t care when I called them at 3am asking how he was. They treated me as a person, but most of all they treated me as a mother.

Elijah a few hours after surgery

Due to living so far away the hospital put us up in a shared flat 5 minutes down the road. It is essential that we were close by, just in case something happened. After Elijah went onto the normal ward we were able to stay in the same shared flat, and a bed was offered by Elijah’s bedside as well.

Do you know this is all funded by the hospital? They allowed us to stay close by to our child who had just had one of the biggest life threatening surgeries you can have. The hospital can only continue to do this if the funding continues.

Last year I teamed up with Elijah’s nursery and local community and we raised around £1000 for GOSH.

The day we left GOSH -5 days post surgery

This year I am launching my own social media campaign. It is a small gesture to try and repay them for saving my son’s life, for giving me the chance to raise my child as a normal little boy. How on earth do you put a price on that? You cannot, so it is vital we support this amazing hospital so they continue to help as many families as they can.

The surgery scars

You take it for granted that your child will sleep in their own bed, in your house tonight? With you nearby if they need you? GOSH needs the fundraising to carry on so they can provide a bed near your child on the ward, to put you up in a shared flat if your child needs an operation or treatment, or just to even be able to get home when things do not go to plan. For sensory equipment, toys and playrooms for children to feel like children again. For vital medical equipment and research so they can carry on preventing children’s illnesses, pioneering amazing treatments and surgeries and to have the cutting edge technology to do something like repair your child’s heart. To get the best surgeons, train the most caring nurses and play workers. It is vital.

Having been through this, it can be the smallest of thing like a fold up bed on the ward for a parent but that can cost around £200-£500.

I feel as I have been through this, I am incredibly lucky, it could have been another story. Elijah is likely to need another heart surgery when he is a teenager to have a valve replaced depending on his growth. He will most likely have the surgery down at GOSH again.

At Christmas last year do you remember that ITV drama with Paloma Faith as Tinkerbell they put on?  The young girl had Elijah’s condition, and was having her valve replaced with the same surgery as he will likely have. It was based in GOSH. Peter Pan is the symbol and heart of GOSH, with JM Barrie gifting the rights to the hospital. It has inspired, provided hope to millions of families. He was the boy that never grew up, which is slightly ironic as because of the hospital my baby boy is able to grow up!

Bit aren’t we all big kids at heart? I know I am so this is the basis of my charity campaign!

 

 

 

Okay, so here is how to take part;

1.Take a pic of yourself being a big kid!

2. Donate by TEXTING NMUM and a £ amount to 70070! or visit

https://www.justgiving.com/fundraising/confessionsofanicumum

3. Share it far and wide social media.

4. Include how to donate so everyone will know how to get involved.

I really hope you can all help me raise money for this amazing cause, after all, it could have been a very different story if it wasn’t for GOSH and that little hand may not have been reaching for mine.

 

Similar NICU MUM posts;

Elijah's admission to NICU

The one with Elijah's surgery

The longest wait

A guide to surviving your time in NICU

How blogging helped me with PTSD