Heart Transplant!!!

After Benjamin's scary time we had a catch up meeting with peter and Rob. The meeting was not exactly what we thought it would be and we have been told that Benjamin's heart function hasn't improved as much as they would have liked even with his weight gain. They believe there is nothing medically or surgically can be done in Bristol so they would like to put Benjamin forward for a heart transfer at Great Ormond street in London.
Its a major process and involves a life time or after care and medication and there is a limited life span of these transplants and that is only if he is accepted. We will need to go to London to meet with the heart transplant people and decide from there. I want to write more but I'm very drained but will update soon.
On a very positive note Justice is down with me in the half term and he has had his very first cuddle and his first personal smile. Today I had Dave Justice and Benjamin all in the bed space together. I had all my boys with me at once and it was perfect.

Big Chubby baby

Its time for a catch up

I haven't been on my blog for ages and \I keep meaning too. Things have changed so much in the last few weeks, So i guess ||I better start telling you of all the great things Benjamin has been doing. He is smiling more, He is doing really well with his trachy and we are so much more interactive with him. He is loving bath time and now sits in his pushchair. Ive yet to push him in it but its great to get hm out of his bed and sit with him in his chair. He can see more and we are more face to face. Benjamin is also doing well wit hiis bottle and tasting foods.Its so much fun planning what to give him day to day but ever so hard fitting it all in. By the time I have given him a wash, get dressed, give his enoxaparin, and catch up with the rounds info, its 12.0 and he is ready for his sleepy drugs ( sedation drugs) and he sleeps for two hours or more. We have a great routine and I love getting cuddles while he drifts off.

A morning in my pushchair.. ill be out soon

Things have been progressing well, Benjamin is amazing us with every new thing he learns. He has a play supervisor visit him twice a  week as well as a music therapist. He really likes the bells and actually grabbed for them at one point. That seems a silly statement but its not as Benjamin has had such a rough start to his life that everything new and "normal" is a massive step toward him enjoying "normal" things that babies like. So when he smiles, touches and grabs a new toy, turns his head to look for me and even cries when he is cheesed off or tired, I feel like all the tears spilt have been worth it. Its so easy to forget how poorly he is when he looks so good.

Unfortunately Dave arrived late last Friday night to find the doctors surrounding Benjamin and putting in Arterial access as well as putting up medazalham and morphine and paralysing him. They believe he had another heart attack( episode ). Needless to say that weekend was not the best as we were really unsure how much damage had been done to his heart and if he would recover. We were on tender hooks for days and were unable to go home so I missed spending the weekend with Justice. I felt so guilty about not seeing him and I really miss him.Benjamin eventually started to get better and his mediation was dropped down slowly and he was slowly allowedd to wake up. It was very hard to see him like that again. I couldn't hold him or feed him, or even dress him, it felt like everything had been taken away from us again.
After a week Benjamin seemed like a different boy, not only was he feeling better and up on his feeds , he had gained weight. On 2 June he weighed 12lb. He is a chubby bouncing baby boy. He is just so yummy and we could finally hold him and chat to him. Things are starting to look up.