Albie’s story

written by mum, Abigail

“This is Albie. He is 6 and a half months old. At his 8 week check up, they discovered that he had a heart murmur.

“After being referred to Leeds General Infirmary at four months old, we learnt that Albie had Tetralogy of Fallot and will need open heart surgery. Fast forward two months, and we found ourselves bringing him in for that open heart surgery…

“I was so proud and relieved of how well Albie was dealing with the fasting. No bot bot since the night before, and he didn’t complain once. My happy smiley baby boy. He then yanked out his cannula, and before we knew it, its was 12:15pm and it’s time to go.

 

“He was smiling away at all the doctors and surgeons around him, then they put the mask on his face. He grabbed my cheek in a panic, looking to me for help, and the tears just exploded out of my eyes. His hand become weaker and that was it, he was asleep.

 

“It was time to leave him. Me and daddy gave him a huge kiss on the forehead, told him we loved him and we’ll see him soon. I placed his little bunny teddy next to him and we left the room.

 

“The next few hours were agonising. The surgery in total, was 7 hours long, and we were so relieved when we were told that everything went okay, and we can see our little boy in an hour.

 

“It was coming up to 8:45pm, and we were allowed to go see Albie in PICU (ward L47). The cheeky boy had his eyes open a little bit and stared straight at us, then they closed again. We were told that he is highly sedated but he still keeps fighting the sedation. We managed to crack a smile stating ‘that’s Albie!’

 

“I had never even imagined what it would feel like to see my tiny little baby with so many wires and tubes going into him. It was scary. My emotions were running wild. The nurses on L47 are astonishing. They made sure Albie, myself and James were always comfortable. It definitely wasn’t easy leaving him to go get some sleep ourselves. But we made sure we was back at his bedside early each morning.

“The next morning, Albie opened his eyes again. He stared into my eyes and began crying. The weirdest part to see was, that because of the tubes in his throat and the anaesthetic still waring off, no noise came out of him, but his face and body movements showed us that he was screaming! Finally, I was allowed to hold him. This was overwhelming with all the tubes and wires, quite difficult in fact, along with the fact that I was worried of him having further discomfort. He struggled to settle on me, and that really made me cry. He’s a proper mummy’s boy and I was missing him.

 

“3 days post op, he pulls out his feeding tube, cheeky little sausage…and they decided it was time to bottle feed again as he was doing so well. The nurses included me in changing him which helped me mentally so much to have some parenting back in my life.

 

“4 days post op, daddy haves to go back to work so I’m anxiously alone. I walk into L47, and I see 3 nurses making my baby smile. The matron on shift that day informed me that he woke up smiling today, and of course mummy over here cried with happiness. My baby boy is back.

 

“Later on in the day, after Albie was progressing so well, he is transferred back to the ward (L51).  It was like a celebrity leaving. Every single person on shift made sure to show their care and say their goodbyes as his cot was wheeled out of there. I was so so happy watching him smile at them all. Knowing that he really was getting the best care a parent could ask for.

 

“We arrive on L51, instantly, the nurses get to it, to make sure Albie is comfortable and that they are fully informed of his case and introduce themselves to me. The day goes by, with regular checks, some scans and re-introduction to bottle feeding with his own bottles. His neck cannula was removed, his wound dressing, and eventually was only left with the wires for his ECG checks. Seeing his wound for the first time was very intense. It hit me. My little baby had just had open heart surgery, and now he’s smiling and giggling again. It’s amazing.

 

“The following day, now 5 days post op, Albie has done so well that he is ready to move rooms again and I can stay the night with him. That night was difficult. After having his ECGs done, he could not settle back down, and he screamed the ward down from 9pm – 4am. He just wanted to sleep with mummy holding him bless him.

 

“Day 6 post op rolled around and it was discharge day! Albie was in a fantastic mood and couldn’t stop smiling. It’s like he knew that he was going home.

 

“We have been home for just over 24 hours. He has been very happy, very sleepy and being a good boy taking his medicine.

 

“Everybody in LGI are all tremendous. From bringing cups of tea, changing his nappy, Allegra in PICU bringing over the crafts trolley so we could make some bunting for Albie, and of course, medically caring for our baby. We cannot thank them enough. You all saved our little boy and we are forever grateful.”

CHSF exists to support local heart warriors and their families. Empowered lives, because of you. There is no better way to explain our charity than using a powerful story – like yours.