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.

Apple and pear for lunch with a side order of blue water

Today was so great. Im fact the last few days have been great. Benjamin had his first taste of Apple and Pear puree. It wa ssuch abig thing for me and turned out to be  abig thing for him too. It was so sweet to watch him try the food. Helen the SALT nurse sat with me and we tried the puree as it was to start with but I thnk it was too much for him. So we watered it down and he seemed to take that better. He licked his lips then had an expression of complete concerntration.
Feeding your baby is something you take for granted but when it comes to feedinga baby of 6 months who has never had anything in his mouth , you realise how much babies hae to learn and how everything is so new and scary. Benjamin did really well eating the tiny amount he did and we will be trying it twice a day to build up his swallowing actions.
Benjamin has aloso been introduced to water in a bottle. We put blue dye in it so we can actually test if its his belly by asprirating his NG tube. The only thing with blue water is that the doctors etc panic when they come over to see him as the last thing you want to see ona cardiac baby is blue lips!!
He doesnt take the whle teat in his mouth but he does lap at the water like a kitten, its so cute! Im hoping in a couple of weeks he will start to drink from the bottle properly and be eating a little more food. It will be fun trying it all.

Benjamin has had such a good week, he is now 10LB, finally double figures, and has started having baths again. He couldnt have a bath properlly due to all his lines and wires so bath time is one of my favourite days.
Benjamin is smiling alot more, he is interacting with people and fixing and following.
Mom helped with Benjamins last bath . It was fun sharing those times with mom. Justice decorated Benjamins Emergency Tracheostomy box and sat watching while I carried out a suction. He is such a brave intelligent lad.
Life is starting to feel normal again, as normal as it can be. He is doing really on his tracheostomy and adjusting well. I have learnt to change his dressings and tapes, I can suction when he needs it and Im more confident about getting him out of bed and holding him like anyone else would hold their baby.
Im hoping to be able to do floor play soon as well, and put him in his buggy. We also hope that he will qualify for a mobile ventalator called a nippy which would mean we can take him out of the ward. Can you imagine my joy when I heard that, I nearlly bear hugged the doctor.

The only down side is the doctors have told us that they plan to get us home and hopefully without the tracheostomy but it probably wont be for a while. They hope were home for Benjamins first birthday. That means we would have been in hospital a year, away from family for a year and most importantly away from Justice for a year.

We know that benjamin will come home well and I know the time we have spent away from everyone will be worth it.

Benjamin really is very small.....

I didn't really realise how small Benjamin was until I started talking to the lady next to us. She has been in PICU for  a long time adn her baby has heart issues. He is 3 half months old and weights 11 lb , Benjamin is 6 months old and weights 9lb!!!!! It really hits home when you talk to other moms.
Here's hoping he takes to solids ( purees ) and starts to meat up xxx

Forgot to say 3rd may 2011



GORGEOUS BOY

 Benjamin now has a flexi trachy, which if you look in the pics is a tube which sits much lower under his chin so he can move easier and if he needs a suction its easier to do. He does fall asleep holding it at times which is really sweet. Ill be having to change them very soon so im having to do some study and verbal checks with the nurses. Al full on at the moment again.

Tracheostomy and Purees 3rd may 2011

Well we have had a great few days with Benjamin. Since this tracheotomy went in he has been alert, much more mobile and seems so mu ch happier. I think he is still getting used to it as he does gag sometimes but generally he is doing really well. I still haven't had my Trachea training yet and I'm nervous but keen to do it. I saw the entry site the other day and it did make me feel nauseous. I told the nurse how I felt but she was pleased about it as it meant we would be safer as we wouldn't be so blasay about things.
Anyway he is so gorgeous and so sweet. He has developed the "Forrester stare" when the nurses get to close to him. Its very funny! I'm waffling again.
Benjamin is going to be on the tracheotomy for some time as well as his inatropes. He is on allot of sedation drugs so a plan has to be put in place to try and sort them out and take off 2 or 3 of them. His feeding still isn't at the optimum and his weight gain is stationary at the moment. There is a 3 half month baby next door who weights 11lb and Benjamin only weights 9lb at 6 months. It makes me realise how small he really is.
The SALT  nurse came down, she deals with swallowing and speech etc and she assessed his swallowing. He took water off a sponge happily and then she gave him a bottle and he licked the water from the teat. I was beside my self as I was so happy.She thinks trying the water fora few more days and then on Friday we will try Purees PUREES OH MY GOD AT LAST!!!! I cried , Mom cried and even Dave shed a tear.

The doctors plan to wean his ventilation so they can put him on a "nippy" which means me and Dave will be able to wheel him around the ward so he isn't sat in is cot for so long. I'm sure it will take time but it will be great. I'm hoping we have a  good summer and he can go on the mobile ventilation as there is a little garden by PICU which i could sit in with him.

Benjamin has his Trachosotomy 21st April 2011

Benjamin now has his trachy. It was quite a quick operation and isn't too scary to look at. And the most amazing thing is we can see his beautiful face. He is the most gorgeous thing I have ever seen, bar Justice of course. 
The trachy is " fixed" for a week. It is stitched in place with Long stitches that are used to keep the entry site open if the trachy does fall out. The long stitches are taped down to his chest with the words DO NOT REMOVE wrote on them. I really hope they didn't write that on when the tape was on his body or he may be tattooed for some time with those words.
The surgeons will change his trachey the first time round and then Me and Dave will learn how to do it. We will have to learn how to suction his secretions , snot and spit!, and how to perform an emergency change .

With all the worries to one side, we finally have our little boy on a steady long term breathing plan which will hopefully help him grow. His monogen milk should be changed soon so he can go on a high calorie feed and we can see his smiles and all his expressions.
No doubt I will add more about his trachy but I wanted to share the news and the pictures with everyone xx

Hours after his operation, sleepy but beautiful

Chilling in his chair, He was awake but obviosly got comfy