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

Trachesostomy and Problem solving 20th April 2011

After Benjamin was so poorly we decided we needed a new plan so had a meeting with Rob martain and Peter Davis. The general feeling is Benjamin needs support throughout his recovery but that the nasal ventilator is no loger a solution to that. They brought up the subject of a trachestomy and we heartily agreed. We had fought it when it was mentioned three months ago but now after seeing benjamin crash very time he is excubated we know its the only way to go. Its a simple operation ( although nothing seems simple with Benjamin) and they want it done before the bank holiday.
A trachestomy would allow him to be supported in his breathing and hopefully grow. This meeting was also needed to plan a time scale for his care. Peter made it very clear but in a gentle way that the plan was to try and have Benjamin home for his 1st Birthday. That is six months ago. Im sure you can imagine that those wors took a long time to sink in and caused some tears. So we carry on nad we adapt again and we teach, play, feed and be Mom and Dad and pray that we beat that plan and if we dont , then we focus our energy on helping him enjoy the time we will be spending here.

Benjamin on off Ventilation issues.... So many problems now

While we were moving house we had our A Team look after Benjamin. Kerry, Kelly and Liz so we knew that he would be absolutely fine. We weren't expecting any changes while we were moving home. Well we were wrong. Benjamin was having a funny moment and Professor Wolfe decided that he may be ready to come off the ventilator and put him on the vapour therm. There seemed to be an air of contemplation and awe that he managed to be settled on the vapour therm. when Liz phoned to tell us their plans and then to say it had worked and that he seemed ok. Me and Dave were surprised and very happy.When we go back to Bristol we will get to see our little boys face, his bonny little nose and hear his voice.
We then heard from Kerry that Benjamin wasn't doing so well and that he may have to go back on CPAP. That's not so bad its still not the ventilator. Benjamin was working very hard, his breathing was stronger and heavier and his colour was grey. Maybe CPAP will be better and we go back to our little boy with a little hat and most of his face showing.
All Monday morning we looked forward to seeing Benjamin, with some trepidation but excitement. He looked great when we arrived.  He was wearing his yellow duck baby grow, wrapped in his blanket and was awake and watchful. He loves his daddy's voice and just stared at him the whole time we were there. After about 45 mins Benjamin became quite unsettled and a little mottled. We finally left him sleeping so hoped that it was just excitement of seeing Mommy and Daddy.

I received a phone call at midnight telling us he had got worse and that he was going to have to be re-intubated ( ventilator back in) and that he still hadn't passed any urine either. So we knew it may have to happen but it was so sad. There are two sides to the feelings you get when your told something like that. The mommy side cries for the loss of your child's freedom to move, interact and play with you. having not seen his face for nearly 5 weeks, that little glimpse is heart wrenching. The other side is the grown up thinking that its better to be on the ventilator so that his heart you understand that its better to wait and  isn't pushed to hard and that the possible damage done to his heart function is minimal and will hopefully not even be an issue. as a grown up you know its better to wait til he is strong and naturally ready to come of the ventilator.
Sometimes I want to scream at the grown up side and tell it that I don't care whats sensible. I want my baby home! Why cant we have that normal life we are craving and why do I have to wait so long?
People tell me it will come but WHEN!!!!!!!

Rant over, Benjamin is now very poorly now. He is on the tube again, his kidneys have been damaged as the blood wasn't getting around as it should when he was working so hard. They have put in a PD catheter which is a type of dialysis. The tubing and bungs involved go through his belly which is just so awful.
He is on muscle relaxant so he is paralysed again and is on sedation and morphine. He was taken off his feeds til the afternoon.
We have gone from an active, verbal baby to a baby who cant move, cant interact and is poorly again and all in 3 days.Once he is stable again, we will be talking to the doctors and surgeons about having a traceostomy! Will we ever get home???

Moving House went well- 16th April 2011

We are finally in our new house. Dave has done an amazing job all week and we had help from Mike, my moms neighbour, dad and Marcus so managed to move in 3 hours. Obviously the new house is full and we can hardly move but its lovely to sit in the garden on the decking and have a brew imagining how it will be to have Benjamin home. All three of us stayed Saturday and Saturday night , Me Dave & Justice, which was lovely. Its been 5.5 months since we all stayed in the same house together.
I want to say Thank you to Barry, Marcus, Mike and Dad for helping us move and tip things and Thank you to Mom for helping clean and unpack and for Feeding us some amazing food while we were there.

Echos and Snores 12 April 2011

Benjamin had a great day today. He was very awake and happily playing with his jungle gym. I gave his morning wash and nappy change but still cant dress him yet.
The cardiologist came over to do another echo to check his heart. These scans normally last 45-60 minutes and Benjamin gets quite unsettled after a while but not today! The screen has lots of colors and lots of movement so he quite happily sat in his make shift sofa watching the screen while he had gel squeezed all over him and a cold probe run over his entire chest. When I next looked at him he had gone to sleep. Unbelievable! He obviously isn't fazed anymore by it. When the scan was over he woke up had a wiggle and then sat up to watch the Zowie again.
The cardiologist said that the heart function looked good and the valve was still leakimg but we knew that. In fact as an informal evaluation the echo showed good things and definitely not a step backwards.

I have been roped into knitting a corgi for the ward. William wants the royal family knit for the wedding. I have attempted  it and the body looks good but the face... well the only way to describe it would be the Sylvester Stallone of corgis. He has a chin that would crack coconuts lol
So to try and reconcile my knitting skills I made Benjamin a little blue hippo and that worked out great.
( Ill add photos shortly)

Medically Benjamin has had very little changes. His Fentanyl has been reduced slowly again. and his Hickman line is booked for Friday again. That's about it really. Its all very frustrating and sad but I know that eventually it will get better. I just hope that we get home by the height of summer.

New and exciting times with Benjamin 11 April 2011

Benjamin was very awake today and very wiggly when I arrived this morning. His beautiful dark brown eyes were so sparkly and his eyebrows were on overload. Zowie was on today so I was able to get his enoxaparin ready , administer then give him a lovely wash. He still suffers from a temperature so clothes are out of the question still. Its funny how getting your baby washed and dressed is so important and so gratifying so I'm looking forward to dressing him one of the many outfits my mom has bought. After washing him and wrestling with all the wires plugged into his legs to put on his nappy, we weighted him. Benjamin now weights 4.14 kg which is 9.12 lbs. He lost weight last week so I was pleased to see the gain.
After weights i got cuddles... for TWO hours. Benjamin cuddled in, pumped his arms around and kicked his legs like any other baby would. He has lost all his hair now so I stroke his forehead which makes him cross eyed!
Later on in the afternoon Benjamin was wide awake and fidgeting. I  decided to do his mouth care and gave him so water on the pink sponge lollies they supply. He sucked that lolly pop dry and when I took it away seemed to be looking for more. His non nutritive feed was due so we decided to give him it on the sponge. Benjamin loved it and as i dripped each drop on the sponge, he sucked away as if it was a bottle. He even took 3ml of water too. I was beside myself with joy. There is always an issue with babies that have never suckled and had feed in their mouth, to develop an aversion and never take to a bottle or even want anything in their mouth. The fact that Benjamin sucked on the sponge and took the milk, which tastes disgusting, and seemed to enjoy it is a really good step towards normal development.
 Unfortunately he swallowed a lot of air, over 30ml, and his belly got very hard. He also started to work very hard and had to have his oxygen turned up slightly as he went a little dusky.
That took the edge of my happiness a little but I'm sure its just something to deal with over time. Benjamin is such a beautiful boy with such a sweet and funny personality. I'm so excited to share that with all my friends and family.

Benjamin is ok ... & April 2011

I arrived this morning expecting to see Benjamin looking rough but when I got there they had stabilised him and he looked lovely. He was awake and seemed pleased to see me as his blood pressure was quite high and heart rate quite fast until I started talking to him and it all went to normal happy numbers. In one way I love seeing his monitor as we can really see how happy he is and how settled he is with different people.
Becca and Lizzy a student nurse looked after him today and they were very watchful.
When I visited him this evening he was flat out comfy, arms up by his face and chewing his bottom lip. A very happy settled little monkey.
 His Hickman line procedure is cancelled tomorrow due to having a bug grown in his cultures so they will wait til Saturday.

Phone goes at 06.00 and Dread sets in ........... 7 April 2011

Kerry calls me at 06.00 to tell me Benjamin has had a little blip!  He became unsettled and went a grey colour. They manage to find the cause and it was that his central line which is in is groin and runs through a central vein was leaking!!!! His Milrenone ( heart medication) Fentynl ( sedation Medication) and his Frusomide ( diuretic) were all on the line so he wasn't getting anything for what ever time. These Inatropes ( medicines or drugs , what ever you want to call them) are all on and need to be weaning very slowly. They definitely can not be turned off just like that.
So they gave him a new Inatrop called Dobutamin due to his colour and hope to get that back off today. They have gone up on his Fentynl and paralysed him again. The paralysis wont last long but its a side ways step we could do with out and it all adds pressure to Benjamin's body. His ventilation had to go up too so they need to wean that too again.
 Luckily Kerry was on and she is always on the ball.
When I called back at 07.20 Benjamin was doing better and his blood pressure and heart rate were better. Cant wait to see him now, just to check myself.

Big meeting with steven and Rob 6th april 2011

We have a meeting planned today to meet with Rob Martin and Stephen Marriage, Benjamins Core Consultants. Its later on the day so we are able to spend some time with the little wiggler and do his cares. After administering his enoxaparin and  other meds, giving him a wash and changing his botty, Its cuddle time. Benjamin is really into the mirrored disco ball by his head so I make sure he can see it and watch it spin. Today is a good day so far!

More Belly time but tryimg to escape his bed

We meet with Rob and Stephen and Zowie , our nurse for the day.It was a very interesting meeting as we found out that Benjamin still has a long way to go and they will not be letting him home until he is extremely stable. Rob said that Benjamin has been and is still a very complex baby and he never dealt with a baby with his level of difficulties, with such a complex valve problem or such a determined little boy. That was very scary to hear but very good to hear as it just proves how serious they take the situation and how much they are putting into his care.Stephen says sometimes it hard not to believe Benjamin is indestructable  but we need to be aware he is deliacte and the sedation and ventalation issues are just part of what he has to overcome.
We asked about the CT scan he had last week and we found out there may be an issue with his brain. He may have Brain atrophy, not apnea as I mentioned earlier in my blog.

Benjamin has fluid surrounding his brain as his brain is quite small compared to a normal brain and the question has been raised if he was born that way. There is no way of knowing that at this stage and they will have to review it as he gets better.  Me and Dave can deal with learning difficulties so its not a major issue but as always I'm sure there is more to it than that.

It was really nice knowing that they have noticed how we have been dealing with things and that they thanked us for being so patient and so seemingly calm about it all. That made me laugh, If only he knew I've had murerdous thoughts at times. Luckily never towards the doctors or nurses, just generally to stupid bus drivers or rude students who knock you to the ground so they can get the last tin of beans in the local shop  lol

So we carry on knowing we will be here for 3 months maybe more. We will adapt and change and deal with the situation knowing that we are closer to taking him home and that we will be a proper family soon.

Getting Better and showing Improvents 5 April 2011

Kerry is back today. Its her first day back since starting on the Out reach team and its good to see her. We had a catch up and an update and I am now doing Benjamins enoxaparin Injections again. It feels good to be able to wash and dress him and  do his cares and meds. Benjamin still has an on off temperature so clothes don't stay on him too long but he looks cute for the time he does wear them.
Life is getting more confused than ever and harder and the Liaison nurses have been chatting with me and have organised a meeting with Benjamin's consultant so we can have an update of his progress in medical terms.
These times don't seem so bad when I see him moving, interacting and even smiling and I Hope that people reading this don't just cry , they smile too and read the hope we do have. I'm aware that many more people are reading this that I first thought and are crying a lot but that wasn't my intention. This is a sad a story but its also a story of courage, strength and amazing people. Benjamin is a strong boy and the nursing staff are clever, amazing and determined  and my family and friends are a source of strength to me and Dave.
I caught Benjamin smiling the other day and it makes me so happy.

HAPPY CHAPPY !

Thank you everyone xxxx

Mothers Day 3rd April 2011

I got a cuddle today and it was great. It filled me with the biggest happy moment I have had in weeks.

We had been in Bridgwater since Saturday sorting the house and spending time with Justice and my parents. Saturday was a full on clean and tidy day followed by a  lovely meal at moms. It was very strange to be home and to sleep in my actual bed. I have to admit I miss it even being surrounded by boxes and mess. Benjamin is doing well, just a few temperature rises but Liz is there so I know he is ok. If anything happened she would be on the phone straight away.
Sunday was a different kettle of fish. I cried all day, or at least tried to push them back. Its been so long and I feel so alone at times that being home and surrounded by my family proved too emotional. Had a good chat with my mom and spent time with Justice. He bought me a lovely card and some very tasty chocolates out of his own money. He is so grown up and so tall.

Loves it on his belly

After another fantastic tea and a nip out to the shops for some normality, we came back to Bristol. We went straight to Benjamin and he was having la ovely time. HE was wide awake and fascinated by the disco ball by his bed. By his bed was a card and a little glass bottle with some flowers. His nurse , Zowie , had gone out and picked the flowers and wrote the card. The card was beautiful and had a little green foot print in it. Under the card was a sheet of little green foot prints and Benjamin had green toes lol. How I kept the tears back I don't know but It finished my day off. I had presents and cards off both my boys and mothers day was great.

31st March 2011- So many issues to think about

Martin is watching Benjamin today and read him the entire book of green eggs and ham. It was so great as he did voices and even more great was Benjamin's heart rate lowered so he obviously liked it.

We have several issues to ask about:

• Stiff lungs from echmo and issues with Ventilation
• Delicate heart and the lack of reserve. How is his heart function?
• Addiction/Need for sedation and how we are going to deal with it

Benjamin's needs alot of physio as his upper left lobe is sticky and compressed. The problem areas keep swapping from left to right day by day.
He will need a Hickman line as his lines are end of days and he will be on his sedation for some time yet as well as his heart medication. We just have to wait til they have a slot for him.

When children are in ICU for a long time they can develop Brain apnea which is when the brain stops working as it would normally and development can become stunted. It is reversible and wont stop him doing normal things once we are able to interact with him and he starts to show interest. Its a scary thing but playing with Benjamin isn't going to be a chore. There are plenty of people around him to keep him entertained.

That night we spent half an hour with Benjamin. He was awake and happy and his numbers were good and we were not expecting that as after the two calls we had through the day we expected him to be unsettled and an awful color. It was a relief.

Benjamin spiked a temperature and has had to keep going to his antibiotics.
His Monogen milk is going up 1ml every 6 hours as they are worried that his lungs wouldn't be able to maintain to much of a upheaval. He still has his chest drain in so any excess fluid could get out but it would still put pressure on his  body.

30th March 2011

Benjamin had two episodes related to the ventilator and positioning as well as secretions. He went grey and his heart rate and blood pressure dropped. It didn't last long but was upsetting as we had to go to Bridgwater to sort out the rent and new house details. Andy was having him again today so we know he will be watched carefully and it really does help when he has a nurse a few days on the trot.
When we got into the estate agents there was confusion as they all of a sudden wanted £275.00 off us . Me and Dave looked at each other and both said "what for?"  So when she said oh that's standard admin fees we were less than pleased. After i explained with a slightly raised voice that I had already asked about that a week ago and that we couldn't afford that as well as finding the Deposit money before we need to move. The woman mumbled something about telling us and shuffled in her seat. I'm sure she could tell I was fighting back the urge to smash her face in the desk several times !!!1 Anyway all sorted and they called us back 2 hours later to say that could drop it to £150.00 now to do "us a favour" lol my word what a day we had had and it was only 15.00 pm.

We have wiggles !!!

29th March 2011
The muscle relaxant has been taken off and sedation is being brought down, Because of this Benjaim has been moving. He is moving and raising his eyebrows and wiggling his big feet. I gave him a lovely wash and dressed him in his stripy baby grow.What a lovely morning

But I then went for a tea and when I returned he was surrounded and being bagged and sucked. His sats had dropped to the high 70s and he lost some of his chest movement. They found that his lungs are stiff and they feel his lung collapsed due to coming off sedation, waking up and maybe starting to feel pain or discomfort. It was not what I was expecting but it didn't take long to settle him and get his numbers back up. They put him prone and let him settle over time. He did have to have muscle relaxant again so all is wonderful movements were gone again.

We had loads of visitors today
The OT reassessing his splints which were working well
 Rob martin to say he kept missing me and that he was s pleaded to see Benjamin doing so well. He had been in Australia so had been away when Benjamin went on Echmo.
Anne the head nurse from ward 32 came to see him and say hi.

Emma looked after him today and it was lovely to see her as its been a while and we talk about lots of "normal" stuff

New chest stitches are looking better

28th March 2011 Diaphram Operation

Today is the day he has his operation, we are booked in for about 16.00 so it ant be a very long operation. That's a relief!
He is looking better today and is in a negative so is obviously weeing alot. I had alook at 3-4 days of his x rays to get a bit more understanding of the issues with his lungs. It was fascinating. Not only did I see the fluid build up and eventual lack of fluid but I also saw his stents and the metal stitches that hold his sternum together. The stents are so much bigger than I thought they would be and really makes me realise what he is going through.

Operation was successful and already there is some release and relief in his chest. The docs managed to wean some of his ventilator down slightly.

Benjamins newest plaster

27th March 2011- A New milk

There is fluid build up in Benjamin's Right upper lobe so a chest drain has to go on to drain it. Yet another drain in his beautiful little body. A cloudy substance started to drain out and the Doctor/ Dietitian tells me it is a substance called kyle ( I hope i have spelt that right)
Kyle is a fat which travels through the lymphatic system, it passes through the super venous artery into the heart and out through the lungs. Back through the entire body and back into the opposite side of the liver. Glucose, sugars and proteins run through the other side.The problem with it is that the kyle is leaking through the lymphatic system and pooling in any small spaces it can and those spaces are in his lungs.
The Lymphatic system is quite fibrous and has been damaged whilst he was in surgery. It is an unfortunate thing to have happened but couldn't be helped.

He will need to go on a prescribed milk called monogen. Monogen does not contain Kyle and will need to be given to Benjamin for 6 weeks. This will allow the system to repair and become stronger. All these different feeds need to be introduced so slowly, and at the moment he is having 1ml per hour due to the NEC he had. Nutrition is not great at the moment and every week he doesn't have feed in his mouth is another month that he could suffer from feed aversion.

I did have mommy time today. I gave him a top and tail wash and brushed the little hair he does have. It was so lovely to be able to touch him with out him reacting to it.I got such a buzz from those 15 minutes of baby time. I also got to look at his pressure sore and it is starting to granulised tissue so it is healing really well. Hopefully another 4 weeks and we can wash his hair :-).

Benjamin is having his operation on Monday 28th , but is the 3rd on the lst so this feels like a minor operation compared to all the rest and we have never been 3rd on the list  before. Woo hoo!

25th March 2011 Unsettled little monkey

When I arrived Benjamin was propped up after physio and he really didn't like it. His sats kept dropping and his colour was awful. He kept gasping and it was very hard to watch. I really had to fight the tears today, and I know a month or so ago it wouldn't have made me so unhappy but after 5 months its hard to maintain a clear head about all these down times. Kelly was on today so she was being her normal great and protective self. She was keeping the doctors in line :)
Finally we managed to settle him and lay him on his left side. Benjamin was much happier on that side and all his numbers improved. Theoretically he shouldn't have been more comfortable as his lung now had to work harder as it was doing more work,, so who know with our little monkey.
I have been feeling really apprehensive and nervous at the moment as we are just waiting n a date that he will have his diaphragm fixed and the words we are hoping to hear " Hes okay and improving well"

I know its alot to ask but I desperately want to hear those words so I can start to feel better and look forward to playing with my boy again

One thing after another............

Today has been the first full day I got to spend with Benjamin as I have been poorly and couldn't visit. When I arrived he was having physio and didn't like it very much. His sats were raised , his heart rate was too fast and his colour was off so It wasn't  a very nice welcome. Also Benjamin is in a positive, which means he is holding too much fluid and is very puffy. He looks like a giant jelly baby!!
 Kelly is looking after him today so I know he is being well card for. Its a great distraction having kelly about as she been on a Cruise and had loads to tell.  I need distraction as our landlord is selling our beautiful house!! I fond out Tuesday and after having a cry and swearing quite alot I hit the internet and managed to set up several viewings. We had two on Wednesday and managed to fall in love with the first house.
So after days of chasing phone calls, emails and bargaining we have TWO weeks to move in!! Yes two weeks to pack, clean and move as well as making sure we are about for Benjamin. He may well be having an operation on his diaphragm early next week. Unfortunately the surgeons damaged the nerve that supplies the diapghram and it has caused the left side damage. Without having this fixed he wil not be able to come of the ventilator. So yet again another issue crops up and with the need to move home its not been a great few days.
On the plus side he is on very little heart function medication and his heart function has improved a bit. We are struggling to see the light at the end of the tunnel  but little things like that make it easier.
He also started 1ml per hour of feed as he has been on 7 days of antibiotics for his NEC ( which the surgeon now says was suspected only!!) and his 5ml non nutritive into his belly.
I fear that the length of time he has gone without milk in his mouth is going to make feeding him normally much harder. But I'm sure its a bridge iIwill have to cross and as long as Benjamin is healthy its a bridge I'd quite happily battle with .

So Many ups and Downs but time for explinations

Benjamin still cant handle being handled and having his cares done. This is because he has become addicted to his sedation medication, medazelham. Its like a junkie detoxing and can be very distressing to watch especially as I am so used to touching him and picking him up.He will have to go through a weaning process that will take weeks and weeks. It will not be a smooth run and the doctors warn me that it will be upsetting and feel like we have gone backwards at times.
He may have an issue with his lung too, poor little man is having to have physio everyday, sometimes twice a day. The problem may have come from being on the echmo machine or his pulmonary arteries being wider and sending more blood out.There is always something new to find out about Benjamin and I want to scream at the doctors to stop messing about and fix him, But honestly they have done absolutely everything they could. They have saved his fife many many times and I have so much respect for them. I just want my baby boy back

I had a meeting with Gareth who is a cardiologist and who has operated on Benjamin several times. He has explained the following which I hope  helps everyone reading this understand what has happened to Benjamin on a "organ" level. It has helped me understand more.

1. Benjamin was born with 1 Truncus which has been separated and adapted. This was the main reason for his first operation and can be seen in detail on page 1 of this blog.

2. Benjamin had a leaky valve, normal hearts have 3 leaves although some peple are born with 2 and manage fine.Benjamin had the 1st operation to the valve to a 3 leave. This didn't last and had to have another operation to turn it into a bicuspid (2) leave.

3. He has a damaged coronary artery, which is the feeding vessel for the heart its self. One side is strong and the flow is good but as the other side is as thin as a shoe string it isn't supporting the left side of the heart.
Benjamin's heart attacks have caused damage to the heart muscle its self and the fact that the coronary artery is not supply the correct amount of blood to the muscle. This may be an issue that cannot be rectified and poor little man may never be strong enough to get better.

4. The valve is key to the blood flow through the heart and the body. The pressure that builds up in the valve forces blood in the correct places but as Benjamin has a leaky valve and a small coronary artery , blood does not always get where it needs to and at the right pressure. When he becomes poorly or reacts badly to the handling he can become grey and deep purple and this is an indication that blood flow is not getting pumped around properly.

So that was a very basic physic lesson with what is wrong with Benjamin and what he is still dealing with and will always have to deal with. I cant shrug off my pessimistic feelings about Benjamin's improvement and find it very hard to sit there and not touch him or pick him up.

JUST GIVING donations

Please use this link to donate to Just giving

<a href='http://www.justgiving.com/Emma-Chillingworth' alt='JustGiving - Sponsor me now!' target='_blank'><img src='http://www.justgiving.com/App_Themes/JustGiving/images/badges/badge9.gif' width='120' height='90'></a>

The not knowing is so hard

After all the heartache and hard times over the weekend we are having a much more gentle time. Benjamin is doing okay. His blood pressure and Heart rate is okay and seems to be improving with time. He is on a muscle relaxant and sedation cocktail so that he is able  to heal. His poor little body is filled with endless wires and infusions to the point that they have to turn one of to put short term antibiotics in. Unfortunately Benjamin has developed NEC. Necrotizing enterocolitis. It is a condition that affects the gut lining and can be very serious. The doctors believe they caught it early though.

Benjamin will need 7-14 days of three different antibiotics and will have to be put on TPN , which is a form of glucose feed and lipids ( Fats ) and his feed will be introduced very slowly. It is unfortunate but with everything he could have experience its a small set back. At least I hope to god it is.

Its a difficult time as Benjamin is just lay in bed and we cant see his cheeky little smile or watch him assess everything around him and we are still unsure on the prognosis and future for him.  I had a quick chat to Michelle, who has spend quite a bit of time caring for Benjamin and the general feeling is that they are happy with his progress and that at the Cardiac meeting on Tuesday , everyone gave a big sigh of relief and just assessed how he performed after coming off the Echmo machine. No long term plans were made. I guess they weren't completely sure he would actually make it through the following 48 Hours.

On Thursday 17th March they took off his paralysing medicine and he woke up with quite a start , and he did not cope well. He became very mottled and his heart rate soared. He kept moving about and trying to open his eyes. It was quite distressing so they paralysed him again. I was overwhelmed and cried again. I didnt want him to be scared but I also wanted to hold him and kiss him better.

On Friday 18th March they tried again and he responded much better and much slower. He wiggled and stretched his fingers allot. He eventually opened his eyes a little and kept smacking his lips together. It was very cute and didn't seem so scary. I held his hand and he squeezed my finger really tightly. He was obviously sleepy but aware enough to know that I was there as he wouldn't let go of my finger. I feel comforted by that and hope that tomorrow he will be awake a little more and I will be able to wash him and dress him.

His stitches and drain sites are looking better but they are stitched on top of the skin again and two of his chest drain sites are quite puckered. The skin has been broken so many times now there will be no way it will ever smooth down. I hope he doesn't feel conscious of them when he grows up. When I left him after evening rounds he was sleeping and he was breathing above his ventalator. He was making a great effort. what an amazing little man to go through what he did and still be with us!

Tears, Fears and Miracles Friday 11th March 2011

We have had the worst time that we have ever had since being in Bristol.That seems like an overstatement seeing as we have been through so much but we have had to deal with the potential loss of Benjamin on Friday, his unexpected life saving operation on Friday, an unexpected second open heart surgery on Saturday and a deadline of 11am on Monday morning. If he didn't start to show improvements by 12.00 he never would and again we may have being saying goodbye Monday afternoon.

Let me explain......
After his successful operation on Friday we knew he had to go back to the cath lab on Saturday to have his stents re evaluated and when we got the call he was back we were told that he had another open heart surgery. They tried to access his femoral arteries but they were so blocked it was impossible so they opened his chest again. They managed to achieve their goals and brought him back again.
But he was really really poorly.

Sunday was a day of rest and tweaking and preparation for Monday morning. He is doing well and there is improvements on echos and x-rays.

Monday- The day from hell

Benjamin looks so healthy. The fact that his pulmonary arteries are able to do there job now and achieve a good flow of blood is making his colour look great. He looks beautiful!  When we arrive they had already started weaning the echo machine, the bed was surrounded. There were so many familiar faces ad that was very comforting. Dianne was with us most of the morning and kept relaying information to keep us up to date.
I sat with her and mom in the parents quiet room and off loaded all my fears for now, for the future and how I was going to cope with all his needs , Justice needs and try and have a normal family life. Benjamin will have alot more restrictions in his life due to the complex issues he has had and will have but Dianne thinks that we are strong people and will cope fantastic and be great parents.
Ian Jenkins and Dc Stoica came into let let us know that there were issues. Ian laid it all out. Benjamin was off the machine and he now had to start to improve and his body had to start to take over. They were going to assess him in an hour and make the decision on what to do next. They saw no advantages with reattaching him to the echmo machine if he didn't cope well. They had to take the canular out of his heart as it was doing all the work and if it was left in, his heart would overload trying to work around it.
If his body didn't take over and they weren't putting the echmo machine back on, he would die.
There were no words to say after that. I just looked at the floor and Dave went quiet, as did mom.
They let us sit thee for a minute and I asked how he was doing at the moment and he was doing ok, so we just have to pray.
That wait for 11.00 was the slowest Ive ever since a clock tick round.
At 11.30 they shut the unit down to remove the canular and reattach all his pipes and valves.

He did it though! His heart kicked in, his Blood pressure was good, his blood gases were good, and he was still looking good. The next 24 hours are crucial as he is still critical.

NO body can believe what he has achieved. Even his surgeon ( who is amazing) came by and was speechless that he was off the machine and doing well. He told us that he honestly didn't have much hope and that we really had a strong boy. What we have is a miracle and what they have all done is a miracle.

Dad arrived today and went to see Benjamin and held me in the unit. I feel so over whelmed and exhausted.I want to lay with Benjamin and hold his hand while I sleep. Hes in a big bed as he had so many tubes, Inatropes, Lines and machinery attached to him, a cot was impossible.

Our second home

The dynamics in the house has really changed. there are some really lovely people here at the moment. There is genuine interest in each others child but also everyday conversations. In fact at the weekend there was 4 sets of families in the garden and all we needed was a BBQ and some chilled beer to make it a party. That feeling doest come very often and it as lovely.

There are some sad stories as well as some inspiring stories that I wish I could share.

There are also times in here that make you hide in your room and disappear from prying eyes and insincere people.  Being private people , both me and Dave struggle with that at times and are very grateful for this sanctuary we call our second home.

Our room is very comfy now as I have brought so much from home. I cooked a chilli con carne in the slow cooker the other day. It was lovely to walk in and smell it but it did waft down the hallway. God knows what the staff though. maybe I need a fridge and a hot plate now LOL

Unexpected Operation Friday 11th March 2011

Well its the day after ( Friday 11th March) and I decided that I was going to stop getting stressed and start today as a new day. I'm going to treat today as any other day and get on with Benjamin's meds, cares and get in a cuddle. I'm sure the doctors will let me know as soon as they know about the operation.
I arrive and Emily is on which is great as she is very good with Benjamin but also I feel like she is a friend. Actually there are many nurses that I feel I have made friends with and will miss when we finally do go home.

Masamo the surgeon appeared next to me and said they were planning on doing the operation TODAY!!! As you can imagine I was a little more than shocked. Dave is at work, Moms gone home and I'm by myself and they plan to go down for surgery at 13.30!!! its 10.30 now so I have very little time to digest or to get people here.
It was funny as I sat there gob on floor and Emily stood looking pretty shocked too! We just both looked at each other with eye brows raised for a  second. They don't do major surgery's on a Friday.

Once I picked my jaw up , I called Dave and my mom and waited.
and waited,
Mom and Dave arrived
We all waited
and waited

Benjamin still wasn't back at 18.00 , but when I called into Emily she said they had said that they had done what they needed to but were going to be a while yet.
He still wasn't back at 20.00. Were going out of our mind with worry and fear. We just want him to come back and be safe.

Finally at 23.00 we got the call that he was back and will be in the ward shortly. When we arrive Benjamin is in a normal bed and the machines are surrounding him. we were told he was put n the echmo machine but to see it was just so overwhelming. This machine is basically an artificial heart and set of lungs. It push, pulls oxygenated blood, once removing carbon dioxide from the blood, through Benjamin's body so that he doesn't have to do anything. The risk of this is his heart may not start again, especially as he has sustained damage to his heart muscle.
Benjamin is naked but we can hardly see his body for pipes, blood tubes, chest drains, infusion wires and monitoring wires. He is very cold as it helps keep his tissues balanced and working well. I eventually get to sit next to him for a minute and hold his hand. My little baby feels so cold and looks so poorly. I love him so much that it doesn't matter and soon blends from my view but doesn't diminish the intense feelings of shock, horror and panic.



Echmo machine and some ofhis Inatropes

 The surgeons have done an amazing job, they have put the stents in and repaired the valve. He has gone through another open heart surgery and his chest is still open. It will need to stay open for several days no doubt. They have all been working 11 hours and look so tired. .
Benjamin has 2 nurses tonight and several doctors and a proffusionist who is managing the echmo machine. He has a full intense team looking after him so we cant stay. We cant sit with him and touch him like we normally do.
Mom, Dave and myself don't leave til 02.30 not really knowing what will happen tomorrow. They are taking him back to the cath lab as they want to re look at his stents and a he is on the echmo machine it is a lot safer! I really hope Gareth and Masamo sleep well tonight as they will be doing it and they look tired. And who could blame them.
There is nothing more to do other than try to sleep ( which I don't) and keep positive( which is incredibly difficult)
Lets just hope tomorrow goes well and he is strong enough to come of the support on monday

20th December 2010- UPDATE Archive entry

Its Snowing!!
Benjamin has a small blot clot in his left atrium which is being treated with a treatment dose of heparin. The does is minimal and is being used to keep the line open rather than do specifics to his heart. Heparin is a heart function medicine.
He has lost weight and is now only 2.48 Kg, which is quite disappointing. He is now having fortifier added to his feeds and is on 480ml of feed in 24 hours! He is just short of a normal feed amount for his age. Its very exciting to See the milk I'm expressing helping him grow and develop, even if I cant breast feed. Ive come to terms that he probably wont breast feed and maybe on enteral( tube) feed for some time.

Were being moved into isolation again, but only to keep Benjamin safe as the ward is full of children with respiratory problems such as bronchilitus. So we have our own TV to watch again. No more Jeremy Kyle though!

The weather is so bad they are shutting part of the motorway so we are worried about getting home and seeing everyone. I really miss Justice so everyday we check BBC weather and pray we can go home for Christmas day.

I had a little blip last night and went to ICU at 02.00 am to see Benjamin but I'm feeling more positive again. I met with Victoria the psychologist about how abandoned I felt while giving birth an dhow I'm finding it hard to let go off everything that happened. Not only are we in an abnormal situation now but I have been in 1 ever since I went into labour. Victoria will get in touch with PALS to discuss my issue. Hopefully it will help other moms not feel so abandoned. The lady from PALS called me and was very sorry and feels passionate about the situation and will investigate.

Benjamin has had a Hickman line put in today. A Hickman line is what they put in the skin to assist better longevity of lines for medicines. It goes beneath the skin for a couple of CM, before going down the veins. This helps stave off infections and can be left in for months. Its a funny looking thing as its white and looped under a see through plaster to check it. It is a double lumen ( two ended line for several medications)
Finally his arms and legs are free from lines so we can dress him properly. Bring on the cute baby grows , if only he wasn't so small :)

there was a stitch left in his chest drain site and it was slowing down the healing. Kerry spotted it and had the doctor remove it. I hope that it will start to heal soon as it really looks nasty and tissue viability are now involved. His surgery scars , on the other hand, are healing beautifully. The skin is smother than we would ever have imagined and we have laughed about the stories he will tell the girls as he gets older. we are very pleased with his healing.

Benjamin is responding to us now which is so great. I love going in everyday and seeing the little "baby" things that he is starting to do. He has a thing about sticking his tongue out and stares intensely at you. He is also Practicing his smiles in his sleep. Such a beautiful thing to watch. He gives me butterflies every time. Benjamin is a very strong little monkey and fights against you if your doing his physio and hes not in the mood. We need to do physio on his arms and legs as the time he has spent on muscle relaxant and sedation has caused issues with his muscles development. He is constantly in his fetal position, or as Dave calls it his skydive pposition. By carrying out physio we are able to lengthen his ligaments and strengthen his muscles. Its a great excusee to touch him.
I love him so much I cant wait to take him home and share him with everyone.

Friday 10th December- Archive entry

We have been in isolation but now were moving. They had panicked and moved as Benjamin had D&V and they tested his poo and thought he had Norovirus. It turns out he didn't and the samples had been incorrectly tagged. Not a problem it was nice to have a little privacy but it would have probably saved a worry and funny looks from other parents.

Hell we got to watch Jeremy kyle so life seems rosier :)

Benjamin weights 6lb now so he is doing well even with D&V.
There have been no major changes today.

9th March 2011- Pulmonary operation - archive entry

Benjamin is going to the catheter lab this morning for a pulmonary operation. They believe that he is pulmonary arteries are far to narrow , which we have always known, and that they need sorting out in hope that it will help his coronary arteries and improve his entire heart function. This operation is risky as they will need to thread wires and tubes through his arteries oh his heart and blow up some balloons to test the heart and then place metal stents in which will open his pulmonary arteries and allow the blood flow to improve.
Gareth Morgan and  Dc Tominiski will be doing the operation and they are great so even though we were only told 18.30 last night we feel happy that they will do their best.
Benjamin went down at 09.00 and was back about 14.00. The surgery didn't work , in fact Benjamin became incredibly poorly with it. He didn't tolerate the procedure and they had several close calls, having to stop and allow the heart  to be received. His Blood pressure dropped and his heart rate dropped, both fairly dramatically, forcing them to stop.
When Benjamin came up he was grey and quite flat. He was very cold and had to be placed on an adrenaline infusion and warmed up.
Even after all this he is still having his operation tomorrow and were terrified.

10 March 2011- Cancellation of Major Operation

Benjamin was due to go down for his latest operation which was to redo his aortic valve repair and to place pulmonary artery stents. It is a major set of procedures with a risk factor of 10-20%. I slept badly last night and woke very early to get down the hospital to see him before he went down.
Benjamin seems so unlike himself as he was paralysed and sedated and it was heart breaking. We spent some time with Liz, and then Nicki ( the nurse for handover) and watched her set him up on his mobile monitoring and reposition all his lines and ventilation.
The doctors was running really late so we were clock watching and then rounds started!! We sat and waited and waited and waited but then James came to see us and asked to speak to us about his operation plan in the day room.
They cancelled his operation!!! The surgeon wasn't able to do it as he wasn't mentally ready, Don't get me wrong he is a fantastic surgeon and there was bound to be a really good reason for it, and they were concerned that the operation he had yesterday  had gone so badly that he needed time to get better.
As you can imagine Me and Dave were stunned, we had spent the night before mentally preparing for a big operation and the possibility of Benjamin not making it and now we are being told its not happening.
 Well that was it for me, it felt like the ton of bricks i had been carrying on my shoulders had increased and dragged me down. My head exploded with pain and tension and I struggled to express my thoughts as they were so angry. Anger was not going to achieve anything and we wouldn't want anyone touching Benjamin who wasn't on top form. It was the right decision to make but a very difficult time for us.
Mom came down as me and Dave had discussed him going back to work and I went to bed before mom arrived. It was good to have mom here as I was able to off load all my anxiety and have a few laughs.

Mom and Me went to visit Benjamin before evening rounds and he looked settled and comfy. He was having another blood transfusion and was attempting to rub his tapes holding his ventilator on , off... as normal! So he was doing ok.

Its a quiet night for me and I'm starting my normal care plan for him tomorrow and wait to hear when he is actually going for that operation.

4th December 2010 - Feeling over whelmed

Today is a much more relaxed day for me. Yesterday Dave went back to work and i felt very lost.We have been spending 24/7 together for the last 3 weeks in an intense situation and its been very difficult. We are lucky we love each other as can talk and sort through the bad times.  We have seen many couples fight, fall out and generally ignore each other. I don't think anyone could imagine what it is like dealing with a very sick child unless your actually dealing with it. It takes every part of you to keep calm, all your willpower to not constantly cry or shout at people.
I never imagined this was how I would spend the first few weeks with my newborn. I thought Me Dave and Justice would be at home, playing with our little man, eating lovely foods grandma brought over in guise that she wanted to make sure we were eating but in actual fact she was coming for her baby fix too!

Benjamin's blood pressure is fairly high compared to the last few days and I'm worried all the plans made so far wont happen.
David Grant and Peter Davis ( his doctors) seem to think even with all the issues we ARE going in the right direction. Benjamin is now on Beta Blockers. They are likely to be long term medication and come home with us. He is on Propanalol and Captapril.
Today Benjamin seems relaxed and happy, which may be because f the sedation he is on.
His BP is between 75-80 0ver 35-40 and heart rate is approx 115-140bpm. He has come down on his infusions and his feed has gone up to 28ml per hour. His nurse Zoey is also a tissue viability nurse so she has a good look at his chest drain and PD Drain sites and seems pretty happy.
Benjamin s incredibly skinny but is doing well. He is wrapped in a blanket. If it wasn't for the ventilator you would never know he was poorly.
He is breathing above the level the ventilator is set at, which means he is starting to work his heart an d lungs by him self. This is a great start so fingers crossed he may be off it shortly.

1st December 2010 ( wednesday)

I haven't wrote for days as it has been really difficult as we have had many ups and downs. Benjamin seemed to be improving and on Sunday at the evening rounds he was at his optimum state. His BP,Heart rate etc was great , he looked good and the doctors said if it was 08.00 in the morning they would excubate him( take his ventilator off)  But by 10.00 Monday morning he was really poorly.
Sunday morning I did his normal cares, wash dress eyes mouth etc  and noticed he looked a little pale but as his hemoglobin was low , put it down to that.He pulled his  funny little faces and yawned at me to let me know he was sleepy and OK. I have to say I really am I Benjamin junkie now. After an afternoon of staring and chatting to his nurse we left at 15.00 for some lunch. We were happy in the knowledge that they planned on taking his ventilator of Monday am and allowed ourselvess to get excited about seeing his face again.
The doctors called him their star pupil and I am very proud of him.

When we arrived Monday morning am, we couldn't see his little nose as he was still on the ventilator. He had  had a few problems over night and wasn't ready to come off it. After speaking to Dc Tom I went and had a cry. I think this is the start of my mini melt down. I became very quiet and despondent. I wondered about like a zombie. What an awful day for me and Dave.

Benjamin may have an infection or a problem with his renal function.

21st November 2010 - SVT overload

Benjamin had 10 episodes of SVT , everyone was very short but that is alot for one night. They are scary but I'm told they are under control.
His eyes are open again and we obviously bore him as he yawns constantly.

20th November 2010 - PD Off, Chest Drains out

PD ( A type of dialysis)  off, Chest rains out... Fantastic day. Those chest drains are sticking out from beneath his rib cage and empty into a bag all the excess blood, PD and body fluids and they have been very temperamental. We are very happy to have that part of his recovery over.
He had another 20 second SVT* so the medication is obviously helping.
With his chest drains out we can dress Benjamin... oooh! bring on the mommy time. I can bath him, dress him massage his cream in and give him a cuddle. What a great mommy day.
 And Kerry is back today and you can tell as Benjamin is comfy and his cot is tidy.His dressings have all been changed and everything is perfect. We love Kerry.


SVT* is an irregular rapid heart beat. It can happen post operation but many people are born with it.Medication may be needed for sometime.

19th November 2010 - 10 days old

Giving Benjamin his NG feed while Bear cuddes up too!

Benjamin is 10 days old today and he opened BOTH of his eyes. He had a wiggle and pulled his face a few times then at 11.20 am he opened both his left eye, his right eye was sticky so I wiped that and then he opened that too. OMG! He actually does have two eyes.
I helped Becca wash and change him and turn him, he then opened his eyes again to see what was going on.
Such an amazingly warm feeling especially after the last few days worry.
Hopefully tomorrow they will be able to get more fluid off him and he may be more awake. I worry that he is in pain or comfortable with all that extra fluid.
Hes up to 20ml EBM ( Expressed Breast Milk)
They plan to take his PD tubes out tomorrow at 06.00 am!! when we arrived at PICU he had fluctuations in his heart and his blood pressure went up to 230bpm, which is scarily high. He did bring himself out of it in five minutes. They tried to get it n the ECG but it was over faster than they could prepare for. Absolutely nothing else changed and if it wasn't for he rapid heart beat Benjamin would have been having a great day.  He will need yet more medication while were in PICU, Normally this type of SVT ( rapid heart beat) normally only happens 24 hours after surgery so they are slightly concerned. These episodes are less likely to happen over time but we must be aware of his temperature , and hope to avoid an infection.
He has been put on morphine as he has become quite agitated with all the fussing and poking, so hopefully he will sleep and feel rested.

First Operation

Thursday 11th November

Last night was great , I got to look after my boy all by myself. I was awake most of the night holding him and marveling at the amazing little man in my arms and wondering how someone so small could make it through such a big operation.

Thursday morning we met with the surgeon, Mr Stoica ad the anesthetist, Professor Wolfe. They explained what was going to happen and that it may take 6-8 hours. They also said they were actually taking him down earlier.As you can imagine both me and Dave were over whelmed but had to prepare ourselves for taking Benjamin down to theatre.
When it was time a nurse called Jess, came with us and I carried Benjamin down. She was very bubbly and chatty and made it seem less scary. I really didn't want to leave him with those people , I wanted to wrap him up and run but I knew this was the only option we had to save his life.
Everyone was waiting when we got there and checked his name bands and some basic details and gently told us to rest him on the bed and leave. 
We kissed him, and went back to his room.

We had decided to go to mom and Dads to get away, pick up change of clothes and things Benjamin might need when he gets out. We wouldn't let ourselves think about the negative side of the operation.

Sitting at moms was so difficult, they tried very hard to entertain us and keep us distracted. Mom made sure we drank copious amounts of tea and filled our bellies. You know what moms are like!
We also recieved a call to say we had a place in a house sponsered by Macdonalds, Its free accomodation and only 5 minuites from the house.

At 18.00 I could wait anymore and asked Dave to call as I was too frightened. It must have been mommy sense as Benjamin was out of surgery ad was doing well.  The whole house was in uproar. We laughed and cried and hugged and then cried again. Me and Dave literally ran to the car and left to see our boy. We did get a frightening call half way as the doctor called to tell us what had happened. We thought maybe something had gone wrong but no, he was just telling us what a nurse had told us.

When we arrived back in PICU, Benjamin was in a little hot cot and surrounded by machines, infusions, medical staff . He was covered in wires, tubes,stickers , probes and they seemed to be coming out of every part of his tiny little body. He was naked other than an over sized nappy and looked so pale. It was heart breaking.

First Surgery

The doctor, David Grant, was over seeing Benjamin's care and seemed very intense about it. We found out later he had stayed there all night.

Day 1 was over and we still had our son

18th November

We went to see Benjamin early today and he looked great ( Looking back at the photos we actually see how poorly he looked but at the time he looked great to us). He was off the morphine and on another type of sedative so he should start to wake in the next few days. In fact as I originally wrote this there are doctors discussing what to do and when. There is talk about waking him slowly and that he hasnt always responded to the normal procedures but has done well to the abnormal treatments. As his mom I am impatient to see him awake and see his eyes but at the same time I want him to wake slowly so that he wont have any more problems.
His heart beat is 150 bpm and is blood presure is approx 53. This is great especially as his heart rate has been 180+ The only time we had seen his heart beat that low was when we cuddled him and he fell asleep in our arms.

Ive been feeling pretty emotional over the last few days, I have become a real Benjamin Junkie. Dave has become incredibly knowledgeable about all the machines, the infusions and the careplans.

Getting Better and Second Operation

Benjamin has been sedated, pumped with medicines and cared fir by amazing nurses and doctors. He has really been improving but a few days later he seemed to be struggling.He has regular echos, which are like the scan you have when your pregnant), xrays and investigations.
They have found out that the conduit they put in has been squashed and is constricting flow and they need to go in again. So in another meeting with his doctors, Peter Davis, David Grant and Rob Martin, it is decided that they need to go in and reassess the conduit. This is difficult as he is very tiny still and he would have to have open heart surgery again and they had already stitched and chopped at him.

So on 17th November he went down for surgery again! We went down at 07.30 so that we could see him before his operation. He looked really good  as he had lost a lot of fluid . He had bloated really badly as the PD tubes had not been working properly and all the excess fluid that should have been drained out of his body instead it had drained into his body.
The surgeons seemed relaxed and positive so we felt confident. Kelly- Marie was changing over his meds etc to the mobile set so that he was ready to go on time, so we left her too it . I gave Benjamin a big kiss and told him to be string and not to leave me.
We went back to the room at Ronald MacDonald and grandma arrived to wait with us. It was quite obvious by 12.99 we were all getting very fidgety and talked about calling PICU. Scarily the phone went but then cut off. So I called Benjamin's nurse, Kelly-Marie who told us they had finished and he would be back in about 3 minutes so we could come down in an hour.She said it had gone well and he was stable.
When we got to the hospital, Benjamin had just arrived and we learnt it had gone well and he was still on the 3 med's he went down on. He was breathing by him self and they had managed to get 250ml of fluid of him. He looked even more delicate because of the loss but well for a second operation.I wasn't expecting him to look so well, and to have his chest closed.
We learnt they had to re fashion the conduit as it was just too big for his body. I just cant believe what they have achieved again. They are so humble and softly spoken but really these people are amazing and hero's in my eyes.

Mm went off very happy, we stayed a while to marvel and then let Benjamin rest. I cant wait to see Benjamin move and open his eyes

Benjamin Rocks and the Surgeons Rock too!

Recieving the News!!

9th November 2010

I had been on the ward for a couple of hours by myself as Dave had gone to sort calls etc and get food. It didn't feel right as I was surrounded by other moms with their babies and mine was in another part of the hospital. I remember thinking that it felt so wrong and that I should sleep as he will be back with me soon.
 A cardiac consultant came to see us and luckily Dave was back by then. She was incredibly friendly and very welcoming so I felt quite comfortable with her. She then said she had looked at Benjamin and he did have a heart murmur but she also thought it was probably more than a simple problem. we were given several options
1. A heart murmur that he will grow out of as he becomes stronger
2. A heart defect that will require medication
3 A more sever form of heart defect that may require surgery

She told us she would like to send him to Bristol's children's hospital as they are they best people to tell us and that she would like to do send him that afternoon. Of course that was a shock as i hadn't even spent any significant time with him, he had already been taken away from me and now they want to send him to Bristol in an ambulance while we waited!
He was gone an hour later and we waited for news, thinking he would be back and i would probably have to stay in hospital for a few days so that he can become stronger.

18.00 The cardiac consultant came back to see us and told us that Benjamin had arrived safely and that he had in fact option 3 and that he had an illness called Truncus Arteiosis Type 2 and that he would need open hear surgery fairly soon. Shock wa ssetting in!!
She explained that in normal hearts you have 2 chambers( as such) that carries blood to the heart on one side and to the body from the other and that Benjamin only had 1 and that it was mixing his red and blue blood together. He was well at the moment but he wouldn't be well soon. He explained loads to us and that we could go to the hospital in Bristol , in fact they were expecting us.
I remember sitting there thinking that my whole world had caved in and this wasn't how things were supposed to be. Dave was a wreck, I was crying and mom and dad turned up at that point. It was the first day of many many tears.
Why was my baby so ill? What had we done? The pregnancy had been full of worries and this just seemed so unfair!
We finally got to Bristol at 22.00 that night and a cardiac registrar was waiting for us. He took us into Benjamin who was in a cot, in a little blue cardigan and hat and looked so well. He was attached to wires and monitoring tools but we could hold him. The registrar explained the problem and briefly the procedure an dlet us know a consultant would see us tomorrow.
 I held my baby properly for the first time, knowing he was going to have incredibly complex surgery and he was still so tiny.
Mom and Dad were allowed in and they held their grandson too. Everything was okay for that hour. The world and its cruel ways couldn't hurt us for now in that little room with my baby and my family for now.

9th November 2010 Giving Birth

Its 8th November ,02.45 and my waters have just broken!! Five weeks early.
I'm feeling nervous but basically very calm. I call Dave and my mom. As you an imagine Mom is near on hysterical when she arrives and Dave is in the car travelling back from Birmingham telling me to stay calm and he will be there soon.I think he is a little overwhelmed as its 5 weeks early and he only just let for work so was asleep after a full days shift.

My bags are packed, I'm wearing my comfy and I want a cup of tea.
Mom looked amazed that I was wondering around calmly and contemplating making Dad a cup of tea when he arrives. Its quite funny to be honest, especially when Dad arrived.
So off we go to meet our little man!

When I arrive at the hospital we shuffle into a labour ward and chat with 2 lovely midwifes. My labour pains still haven't started so once Dave arrives we are taken to the ward. There is no real chance of going home to wait as my waters have broken and i am at risk of infection.

I am getting excited but really bored by 18.00 that night. There has been talks about starting my labour pains artificially but they are very busy an dim just have to wait. By 20.00 I am getting very upset and demand someone tell me something of use. Guess what I'm not going anywhere!!
So best bed down and hope i start naturally...
and I do 06.00 on 9th November the pain rains down :) and it comes strong. Dave is asleep ( well someone had too) and after I shout at him he shoots out his chair and gets a nurse. Oh yeah! I'm ready to go now whether they are or not!
At the labour suite I'm introduced to a midwife who promptly disappears and leaves us. By the time I arrive to the labour ward the pains are intense and my vision is clouding over. Get myself on the bed, and listen to the midwife come back in and ask me about pain relief, giving me options but then saying " actually you cant really have that". At this point I'm ready to slam her head into the wall and tell her to just give me some gas and air!
That's good stuff and it easies the pain. Upon examination she says with some amazement that i was 8 cm dilated and then disappears again!!!
It was at that point that I apparently declare that I'm going to kill her and that I'm going to push. Dave tells me not to and to lay on my side and frantically calls for a midwife.
When she arrives and looks to see whats going on, she sounds shocked when she says " oooo theres a head" YEAH i bloody know i can feel it. 27 minutes late Benjamin is born.
He is early so is taken to the incubator to be checked over and the special care nurse comes for him. This is the point that things go wrong
The SCUBU nurse is nearly out the door before I had even seen him. I called to him to show me my baby then he disappears. He is beautiful and we know he will be with us shortly as they are just checking him out! We were wrong.

So Benjamin is taken away and we are brought a pot of tea and we are then left abandoned in a room with all the lights off and no idea what is happening. I don't even know where the showers are and if I can get myself dressed. An, hour later after Dave has wondered the corridors I get taken to the shower but then left to find my way back and we sit again for nearly two hours in that room. My midwife wonders by and seems amazed to still see us and to our relief wheels me to special care to see our son.
He is in an incubator and we are told that he has a heart murmur and that they are looking into it but we could hold him once we disinfect our hands and arms. Wow! its the most amazing feeling finally holding Benjamin. His skin is so soft and his fingers so tiny. Hes obviously early and very delicate but looks perfect. We get cuddles and time alone. Everyone is telling us how beautiful he is, but we already know that.
We are in love and were ready to go home. We are very worried about the hear murmer but they assure us that it culd just be that he is early and will have a cardiac consultant look at him.