A week ago yesterday, we were holding Ben in our arms, the first time ever since he was born. It was a wonderful sensation to feel his weight in our arms, and for him to be happy and contented. He had a good couple of days where all his numbers and his appearance had improved. Going home that night, we both had more hope that he was going to pull through.

This time last week, Thursday the 29th of December, we were getting ready to head into Temple Street, as one of the nurses had called and told me that he had not had a good night and the doctors wanted to talk to us about his treatment. It was the first time we had been summoned to the hospital, that scared us. When we arrived, we were told that his condition had worsened since the call two hours ago, and that things did not look good at all. All his numbers had taken a downward turn, oxygen saturation was low even though he was on 100% oxygen, his blood pressure was very low. The poor little man had a pained looked on his face, he was crying his silent cry and he looked as if he had aged overnight. He looked exhausted, as if he had no strength left.  Our hearts sank at this,  and were filled with dread and sadness.

After a discussion with the doctors and nurses, Ben was moved into a room so we could spend some time with him. Once again we got to hold him, but in such a different way to the day before. These were going to be our last moments with him.

For a couple more hours he tried hard to keep going, but it was not meant to be. He passed away quietly just before 4pm.

The rest is somewhat of a blur in terms of time, but a very vivid blur in terms of memories, and this will remain.

On Saturday, New Years Eve, we were touched and moved by so many of you who travelled across the country or overseas to say hello and goodbye to our son Ben, both in Staffords in Portmarnock, and in Glasnevin for his small service.

We will always remember Ben, he touched our lives in a way that we cannot describe well enough to do it justice, other than to say he was our son, and we loved him greatly.

The following is a poem that was read out at Ben’s service

I’ll be in the breeze that rustles in the trees
When autumn days are here
The first winter snowflake which falls in this place will just be me kissing your face.

When light gentle raindrops fall on your brow
I’ll be whispering ‘I’m with you now’
The sunshine that bathes you in its warm summer glow
Will just be me kissing you so.

And when spring comes around, I’ll be easily found
In the flower you hold in your hand
So whatever the season, please don’t be sad.

So grieve awhile for me, then let your grief be comforted by trust that we will meet again.
Bless the memories within your heart, I won’t be far away, for life goes on, and if you need me, call and I will come.

Though you cannot see me, I’ll be near with all my love around you, soft and clear.
And then, when you must come this way alone,
I’ll greet you with a smile and I’ll welcome you home

We would like to thank you all, on our behalf but more importantly on Ben’s behalf, for all the support and kindness you have all shown to us in these last difficult seven weeks, for that we are grateful.

Richard & Grace & Ben

We miss you Ben.

Hope you all had a really nice Christmas with your family and friends. I spent Christmas in Temple Street, and Santa found me! He came and brought me some lovely presents. A teddy with a santa hat, a lovely book with a bunny sticking out of it (he was very soft) and an Irish speaking teddy! You press different parts of him, and he says things in Irish. I’ll try and master English first though, and then we’ll see about Irish.

The week just gone, has been another rough week. I am trying to think back as to when this was not the case, and I am not sure that it has really happened yet. After I wrote my letter to Santa, things went downhill for a while. The fluid was still building up in all the wrong places, my tummy was at me and had explosive nappies apparently. I know I am way too young to play with fireworks, so I’ve no idea how they came to be explosive, but they did. Everyone seems to think that it might just be because of all the medication that I have been taking, all I know is that it left my bum quite sore and red… They had to take me off Mum’s milk, because they also think that I have become lactose intolerant, it could be because of all the medication, not sure yet, but it does seem to have helped with my tummy, and it has settled down in the last couple of days. The doctors came and had chat with Mum and Dad, and the doctors looked very serious. It is never a good thing when the doctors have that look on their faces, it usually means that they are going to make Mum and Dad cry, and that makes me sad. I did not hear all that they were talking about with the doctors, but I know that they were all very sad, and both of them have since then kept telling me to get better, to be stronger, not to have anything else go wrong for me. They told me that they know I am trying and fighting as hard as I can and that I am a strong and brave little boy, but that I really really really have to try hard now, that it was important that I made progress, and soon.

I am doing my best you know, but if it is not one thing, then something else has a go at me. It is not fair, all I want is to get better and to come home to Mum and Dad, see my room and meet all the rest of my family.

So I decided, with the help of the doctors and nurses of course, to try even harder. The doctors helped by increasing the amount of dialysis I was getting to really work at shifting that pesky fluid that was in all the wrong places. Not only is that fluid making me look fat, but it also pushes down on my lungs and gets inside my lungs and gets them all wet! That wetness is especially not good for me, as it means that as result I am not able to get full on oxygen saturation in my lungs, so that fluid has to go. I don’t like dialysis by the way, they have to pump loads of liquid into my belly and leave it there for ages before they let it out and then the cycle begins again. It is really uncomfortable, and I find it very hard not to complain about it when they do the fill, but I know I have to be strong. The good news is that it seems to be working again. I have lost loads of fluids and now my head does not look like a really big ball, and I heard Dad say to Mum that we could really see it now on my chest as well. So I’m happy with that. They have also been reducing the drugs that regulate my blood pressure, and I am now able to keep it a decent level without the help of those drugs. I need to do that to keep my kidneys from shutting down again.

Like I said, it has been a rough week, and it was not the way that I had hoped to spend Christmas time, but I have worked really really hard at getting better, and I think I have managed to do that, even though I still have a long way to go, but I think I am now heading in the right direction.

Yesterday though, a nice new doctor came to talk to Mum and Dad and told them of more results that they got from a lung biopsy they did when they had my chest open to close my PDA (partem ductus arteriosis and not personal digital assistant…). The good  news from that was the pulmonary hypertension did not damage my lungs to the point of being irreparable, that was a very big relief. When we got the initial results, we were told that there were some anomalies that we needed to have a respiratory consultant take a look at. That they did, and it turns out that I have PIG. PIG stands for pulmonary interstitial glycogenosis, and is a very rare condition. It has only been described since 2002 and there is very little known about it.  They won’t know much about what it means for me until my existing condition gets better, so we’ll keep an eye on that and see what happens.

So all in all I think it would be fair to say that I have improved somewhat, and I have lost a lot of fluid, and that is good.The diagnosis of the pulmonary interstitial glycogenosis is a set back, but there is a lot of unknown about what will happen with that so we will have to wait, and I’m sure that Mum and Dad will tell me about those things when the time is right.

Today though, has to be the best day ever. Yesterday Dad asked the nurse looking after me if there was a chance that Mum would be able to hold me. The last time it was mentioned as a possibility was about two weeks ago, and then I took a bit of a turn for the worse so that knocked that on the head. Seeing that I had been a bit better in the last few days, Dad asked again, and the answer was “Yes of course!” So with that when Mum and Dad arrived today, the whole process was kicked off. It took quite a lot of effort to get me into my Mum’s arms, 3 nurses and a lot of shuffling of pumps, tubes and wires, but we got there in the end.

Here I am with Mum, can you see how much she is smiling :) (Look Loyal, it’s the lovely blanket you and your wife gave us!)

Me Mum and Dad

Me and Dad!

Thank  you Santa, although a little late, we were all glad that you were able to come and bring us our real present this year.

That’s all from me for the moment, I’ll see you all in 2012. I’m really hoping 2012 is going to be my year and that I’ll get home to Mum and Dad really soon.

Ben

My name is Ben, and I am 5 weeks old today. I have been quite sick since I was born, and I have been in 3 different hospitals since then. I know you are very busy at the moment, but I’ll try and explain things to you, so that maybe you can understand what is going on.

I am hanging in there, a few more ups and downs in the last week. I have been moved back to Temple Street Hospital for about a week now. The transport went well, so that was good, and I settled nicely into my new bed. It is a big boy bed! I am not in my own room any more, I am in the middle part of the ICU. It is nice there, I can see everybody around me, and I know that everyone that is around sees me and can come look after me when I need to be looked after.

Thursday was a good day. I was all settled in, and all my numbers were good. When I say my numbers, I mean my blood pressure (BP), sats (oxygen saturation in my blood), pee output, dialysis output (PD), blood gases. All in all, all the numbers were good. That meant I was able to just have a mooch, have a look around. Mum and Dad were there, big smiles on their faces. It was nice to see them smile. I don’t get to see them smile very often (I sleep a lot, or if I not asleep I am under sedation), and I don’t think they get much of  a chance to smile lately. I saw Dad take a picture of me when I was looking around, I think he likes to take pictures.

That was on Thursday. I’m afraid that things have not really gone according to plan since then. On Friday, I had built up a lot of fluid again, and it was all around my head, and some on my body. That is not a good thing. Also, I am not comfortable in some way that I cannot describe. Being so uncomfortable means that I get upset, and I wriggle around a lot. When I do that, the pulmonary hypertension flares up and my oxygen saturation drops off. When that happens, I get even more uncomfortable – I heard the nurses say that I am ‘distressed’. Sometimes, I can get an extra boost of oxygen from the ventilator (that’s the tube going into my nose), and that helps get my saturation back to normal. At times though, it can take a couple of boosts like that to get me sorted. Other times, that does not work either, and then they have to bag me. That is when I get a higher concentration of oxygen at a different pressure and is easier for my lungs to get what they need.

When I get myself worked up though, even the bagging does not work all that well, and they have to give me some sedatives and/or morphine to get me to settle down. It is not nice when they have to do that. What happens then though is that my blood pressure drops off a lot, and that means that my kidneys don’t get sufficiently perfused. That means that my kidneys don’t work as they should and I don’t pee as much as I should. Toxins build up around my kidneys, and fluid builds up around my body. When the fluid builds up, that puts pressure on my lungs, and they are not able to inflate properly and collapse.

So as you can see, it is a complicated balancing act for the nurses and doctors to get everything right for me to feel better, but I know they are trying very hard.

What I described above is what happens to me nearly everyday, sometimes a couple of times a day. It makes me sad, and I know that it makes Mum and Dad sad too. As a result of all this, I have had to go back onto some drugs I was on before to control my blood pressure, which in turn will help me to stay properly perfused (I think that means that my blood gets to all the places it should).

Granddad Tommy and Auntie Sophie were up to see Mum and Dad on Saturday. I have a lovely horse teddy waiting for me at home that I got from my Auntie Sophie. I wish Dad would stop forgetting to bring it in for me to see, I’d love to see it. Granddad Tommy brought me a lovely book of fairy tales that  I can’t wait to see the pictures in, and maybe even for Granddad to read me a story from it, that would be great.

On Sunday, it looked like I needed to go back to Crumlin hospital, back where I was last week. The thought was that I needed to have some of the holes in my heart closed. That was a scary thought, I’m too little to have another operation like that. The good news though is that my cardiologist said I did not need to have the operation after she saw me on Monday, we all sighed a big sigh of relief at that. She also said that my heart was not the problem with everything else that was going on. It was having to work harder than normal, but other than that, there was nothing the matter with it, and that was a bit of good news. The holes in my heart have in fact gotten smaller since I was born, and that they would not require surgery, ever!

So we are now 4 days before Christmas. I’m not too sure what it is all about yet, but what I do know is that I will still be in my bed when it happens. Mum and Dad will be here with me, and that will be nice.

Dear Santa, I wish for one thing only, well maybe two. My wish is that I will be well enough for Mum to be able to hold me in her arms. That would make me so happy, and I think that it would also make Mum happy to. The second wish is that you can help to make me better so that I can home to Mum and Dad.

Time for me to go, but before I do, I want to wish you and all your friends and family a wonderful Christmas, and that you enjoy spending quality time with them all. I also want to wish all my friends and the nurses and doctors who have looked after me in the Rotunda, Crumlin and Temple Street a very happy Christmas.

Thanks for reading Santa, I hope to see you soon.

Ben

p.s. I am in the ICU on the third floor of Temple Street Children’s hospital

I have not turned into a flesh eating speed zombie as the title might imply. It does however mean that I am still hanging in there, and in this case there still being in Crumlin’s Children hospital.

It has been another long week, with a lot of anxious waiting. The operation I mentioned last week was scheduled on and off, and on and off. That made me sad, as they had to make me fast during that time, and I missed my dinners…

Thursday was a good day. For a little while, I thought it might be good to finally spend a some time having a look around. So I opened my eyes for a few minutes and took a good look. Mum and Dad were there, smiling and being all happy at me looking around. Mooching around was fun, but tiring, so after that I had to take a nap. As far as I could tell though, they were really happy, I could hear them smiling!

Friday was really good too, the nurse that was looking after me that day, Angela, asked Mum if she wanted to hold me. I would not be a full on hold, because of all the tubes and lines and what not, would make that too difficult. It was good enough for me though, and any type of holding by Mum would be great. Angela picked me up a bit, and told Mum to put one arm behind my back and neck, and the other under my rear end. But that was it, Mum was holding me! It was so nice that after a little while, the lovely comfort of Mum holding me had me falling asleep in her arms. I look forward to doing plenty more of that, and with Daddy too.

So The operation finally happened on Saturday. After all that waiting, it happened in the morning and I was in theatre around 11am. I don’t really much of what happened then, or after, I was fast asleep. The surgeons and doctors were happy with how the procedure went, but sadly the rest of the news is not so good.

What we all wanted to happen from this was that the PDA close (that valve that should have closed but didn’t), would sort out the irregularities in pressure between my heart and my lungs. Even though the procedure of closing the valve worked, the pressures did not regulate as expected, meaning that the underlying problem of the pulmonary hypertension is still a problem and has not gone away.

I know that this news made Mum and Dad sad, because when they came into see me, their eyes were all red. When they are sad, that makes me sad too.

What has to happen now is that the pressure imbalance has to be taken care off. This will hopefully happen when my lungs start to work properly again. For that to happen though, I have to start a new course of medication (Dad was saying that one of them was based on Viagra, and he laughed – I don’t why, what’s viagra?), and by all accounts, this is going to take some time to work, ball park a month.

I forgot to mention that after my op, I got a present from one of the physio’s. It is a duvet hand stitched by a nice lady who is part of the Henry Bear Blanketeers. These people are wonderful group of people who knit and sew blankets for children and babies who have had heart operations, to keep them warm and give them something comfortable to have and hold. Thank you so much. I can’t have it at the hospital at the moment, because it is too big for my bed, but Mum told me she was going to put it in my cot at home for now.

More friends came to join me and Ben Bear in my bed! I now have Little Bunny, and Tux and Ben Bear of course.

The yellow plaster on my chest is where they had to open me up to close off that valve. I’m going to have a cool scar there when I’m older!

I also got a lovely pair of socks for Christmas, hope I’ll be able to wear them soon.

So that’s about it for now. I have just been transferred back to Temple Street from Crumlin, so that is good, it means it easier for Mum and Dad to come and see me. A very big thank you goes out to everyone in Crumlin who were really nice to me and looked after me so well.

Ben

So I have now made it to a third children’s hospital in Dublin. On Friday last, I was transferred to Crumlin Children’s Hospital. I much preferred the trip this time around. Moving house went really well this time, all in all it took me about 1hr30mins to get across the city! Bed to bed! During my last transfer it took me that amount of time just to get from incubator into my travel incubator…

Mum and Dad followed me there, and they were really glad to hear that I travelled so well. My new room is even bigger than my last one, and even quieter – I like that, it allows me to get as much rest as possible.

On Saturday, the day I was supposed to have my operation. Did I mention my operation? The doctors think that it will help sort out my pulmonary hypertension, and also help my kidneys to work better. They want to close something that is called my ductus arteriosus (a vein between my heart and lungs), they call the condition Patent Ductus arteriousus or PDA for short. (Dad tells me to tell you that wikipedia have a good explanation of what it is). It all sounds complicated to me, and those words are very big for me… Anyway, the surgeon reckoned that it was not a good time for them to do this, because I had not lost enough fluid, and that it would be bad for me to have the procedure done in my current condition. To add to that, all of that fluid was too much for my little lungs, so on Saturday one of them collapsed, the nurses and doctors fixed me up. Sunday though, the other one had a go. They have been getting better now, and all the docs say they should be fine once they remove the extra fluid I have been carrying.

For a couple of days Dad looked like a duck :) he had a cold and to not spread his germs, he had to wear a mask, I thought he looked funny.

He is better now, but he did not like not being able to see me for two days though, that wasn’t nice, I did not like it either, I missed him, but Mum was there though.

 I am starting to feel better, and one sign of that is that I turning into a hungry little boy.

Over the last couple of days, they have increasing the amount of milk I have been getting. From two mls every two hours, to five, to twelve. Last night they took me off the drip entirely, and I am now on 24 mls, wohoo!

I have also been able to pee more on my own, but I still need the dialysis, because of all that extra fluid I am still carrying, in my 3rd spaces apparently. Not too sure where that is, but what I do know is that it is not supposed to be there.

Another sign that I am doing better is that Mum and Dad are very happy that everyday I seem to have a better plate count, or should that be platelets (some of the things they say are very confusing)…

The plan is now that all the doctors are going to talk about me on Thursday, and they will then decide about this operation of mine. Hopefully, they will decide that I am better enough to have it, and then I will be crossing my little fingers to hope that it helps to me out. They think it should, so I really hope it works, because I want to go home, I have more teddys waiting for me that I cannot wait to hug. I think also that Mum and Dad are tired, and would rather I were at home, so that is where I want to be.

The picture below is Mum cleaning my mouth, because i like to blow bubbles, but then my mouth gets all messy, so it has to cleaned. Do you see the lovely bear with name on it? My Dad’s cousin made it for me, and I love it. It came all the way from Sweden! I wish I could have all my teddys, but I’d have no room in my bed if that were the case…

I have to have a little sleep now, so that i can wake up and squeeze Mum and Dad’s finger when to come to see me later. I like that, I like to know they are there, hopefully Dad will read me another story today, and I hope that Mum will have socks for me, and that she will be able to rub some cream into my hands, they get very dry here under my heater.

I know I said it last time, and the time before, but all the same. Thank you to everyone who are thinking of me, and asking about me and sending me their weep wishes, it makes me happy, and i can’t wait to see you all really soon.

Ben

My Mum and Dad told me about all the good wishes everyone sent onto me – thank you so much, it was and is nice to hear about them every time they come and visit me. I can see in their smiles as they tell me about them that they appreciate enormously.

So today I am fourteen days old, it has been a long 14 days. I have had good days and bad days. A few more bad days than what I would have preferred, but those things are not up to me I’m afraid.

Since I wrote to you last, a few things have happened. My kidneys have not been working as well as they should, mostly due to the fact that I have not been well. Because of this it was decided that I needed to get some dialysis done to help process the fluid that has built everywhere in me. For this to happen though, I would need to leave the Rotunda and head up to the road to Temple Street Children’s hospital. This was planned for Sunday morning, and although they tried not to show it, I could tell that Mum and Dad were nervous about me moving. As it happened, so was I. Would all the nice people in Temple Street know how to look after me the same way that all the wonderful people in the Rotunda knew how?

On Sunday morning the transport team arrived and moved me into my travel incubator, that was a little unsettling and it took me a while to get settled into it. After a little while I did settle and they moved me into what will turn out to be my first car ride!The transport was fun, they turned on the blue flashing lights for me, and they got me safe and sound to Temple Street in no time at all. I was moved into my new room, and it was nice to be moved out of the incubator that I had been in. Especially for Mum and Dad, because that way they could get a good look at me.

A couple of hours later, I was settled into my new bed, and I was getting to know all of the lovely nurses and doctors in Temple Street. I need not have worried about them not knowing me. Everyone at the Rotunda had passed notes and spoken to Temple Street to let them know about me, and to let them know that I was a bit delicate (like my Daddy…).

Then they prepared me for my dialysis. Hey presto, that was done, and the process was started. So far so good on that front, it looks like it is working as it should. That is a good thing, as it should help me get me that bit further on the road to recovery (and also get rid of that puffiness I appear to have developed).

Next week though is another big week, as I will be going to visit another hospital. This time it will be Crumlin Children’s hospital, where they will be carrying out an operation to close off a duct inside me. This is what should have closed up after I was born, but did not for reasons I am way to little to understand. What I, Mum, Dad and the doctors are hoping, is that this procedure will help with me getting better and stronger to deal with the pulmonary hypertension which I still have. It is up to me though, I have to do this by myself, all the doctors and nurses are only helping me to stay strong so that I can heal myself.

All of your thoughts, well wishes and presents! (Can’t wait to get home to play with my teddies) are helping me to do that, so thank you so much. I can tell that it also really helps Mum and Dad as well, they have a big smile on their faces as they tell me about all these things.

What I really like about my new bed is that Mum and Dad are able to hold my hand now, and rub my legs. It is nice to be touched by them, I can’t wait for the time when they will be able to give me hugs.

Now I must rest a little to get stronger and stronger!

Bye for now,

Ben

p.s. Super super big thank you to everyone in the Rotunda who looked after me so well when I was there with them. Everyone on the NICU ward is a hero to me, and I will always remember them.

Seven days ago this morning, at 5:08am I was born. It was a fairly quick affair, for which Mum was rather glad, but also a little too quick at the same time.

After I was born, the wonderful midwives and doctors at the Rotunda noticed that I was not doing very well, so they cleaned me up and got me ready to be taken away from Mum and Dad to a special place. I was happy when Mum got to hold me for a minute, but sad also that it was only for a minute.

After they took me to the NICU (neo natal intensive care unit), they had to do lots of things to me, tubes and wires and all sorts of things. Not very nice really, but I figured they had to do it.

I was not able to see Mum and Dad until later in the morning, and when I saw them, they seemed happy and sad at the same time. Apparently, I have a condition that is called Down Syndrome. I’m not too sure what that means yet, but what I do know is that Mum and Dad will look after me and love me, just as much as I will look after them and love them.

Later that evening, I was not feeling well at all. A very nice lady doctor spent a long time with me to make me feel better. When Mum and Dad came in to see me again, they looked sad and also very frightened. The nice lady doctor was talking to them and explained to them what was making me feel so bad. She used lots of words that were complicated and she had a worried look on her face, she also said that I was a very sick baby.

She said that what I had was called Pulmonary Hypertension, and it was something to do with how my breathing had changed from the way babies should breathe when they come out of their Mum’s belly, to how I used to breathe when I was inside Mum’s belly. This is not a good thing, because what happens is that one side of my heart does not get to work how it should, and that affects how my lungs work. My blood pressure gets affected by this, and that means that I am on a lot of medication to make everything work the way it should again.

Since last week, I have been getting better, but very slowly and in small increments. Because I am on so many drugs, getting the balance right is hard. They are trying to wean me off some of the drugs, but sometimes I don’t like that, and they have to go back to the levels I was at before. The ventilator also has a mixture of gases coming into me, and for the moment I still need that, and may need it for some time yet.

All of the lovely nurses in NICU take great care of me, and are very nice to Mum and Dad and they answer all of their questions and that helps them understand things. They don’t hold back with the information that they give them, and although that is hard for Mum and Dad to hear at times, it helps them to know what is going on.

I have a load of neighbours in NICU, and I hope that they get well soon too, I know that everybody there is doing their utmost to help them get better.

Before I go, I want to thank everyone who say hello to me, and who are thinking of me. I know about you all because Mum and Dad tell me of all the nice things you say and do for them when they come and visit, and that helps me to get a little stronger everyday.

Bye for now, I have to go and get better.

My name is Ben, and I am seven days old today.