Achey Breaky Heart

Ok so a bad pun, but hey I am allowed. Ellie had her surgery yesterday. She went in around 4.30pm and came out just after 11pm. She is recovering well but we will not know more until the next 48 hours have passed. She is swollen, she has about 14 tubes feeding her medicine, she has an external pacemakeer and her chest is still open from the op until the swelling goes down. It truly is shocking to see her. So here is a picture of her and me from happier times.

I'll keep you updated as and when I can.

Welcome to the machine

These are the machines that Elena is attached to, isn't it lovely? When we pick her up to cuddle her, we have to make sure that we don't pull out any of the wires.

I am back off to see her later on today, so will report pack if there is any differnt news.

A bit more about Mr. Bell....

Obviously Mr Bell didn't turn to the gay side, as he is now going to marry Jude. Nick and I formed a bond over rugby (he was good and I was a good talker) and we had many fun days watching and on occasions (for me anyway) playing.

We decided one year to go to Rome to see England take on the Italians in a six nations game. We flew in on the Friday, took our lives into our hands by getting a cab to our hotel. We checked in which led to some confusions, what with us both being called Nick, and then we hit the town.

I can honestly say the whole weekend was hilarious, summed upo by the first night. Nick happened to know 2 guys who were in Rome from his hometown, so we met up with them. By the state of them you would have thought they had been in the bar for 2 days non stop. The only Italian they seemed to know was "quatro martinis" - so that was what they had been drinking. We joined them for a few, and only left them when one of them decided to run into a glass door. Luckily he bounced off.

Nick and I headed home and discovered an English pub so of course we entered. The Albert was a fairly decent pub and it was good to move back to beers after all the martini. Whilst in the Albert we decided to buy some crass t-shirts ("Never mine the Trevi, have a Bevy"), and whilst Nick was getting chatted up by a young 18 year old girl from England I was stuck with her father, who was trying to get me to marry his other daughter. This sums up Nick and I, he gets the girl and I get the baldie.

I could go on with the story but it ends with me getting lost in Rome and sleeping on a bench whilst Nick made it back to the hotel, and no one wants to hear about that.

Good luck Nick and Jude, I know you will be very happy together.

Oh ok and another

Just couldn't resist putting another one up.

Picture Perfect

Here is the latest picture of Ellie. I think you'll agree she is still beautiful.

Waiting for my real life to begin.

Nothing to report on Ellie, apart from she has gained a bit more weight, and her surgery is scheduled for Tuesday afternoon and it will take about 5 hours. We feel like we are in purgatory at the moment, as we just want to operation to be done and for Ellie to be better.

So much has happened this year already and it is on 20 January. Hopefully things will calm down soon and we can get back to a normal life. My new job starts on 27 January so if all things go well we will be looking to move house, which is normally a stressful activity but compared to what we have gone through it will be a piece of cake.

Walk this way

A really funny thing happened when we are at the cardiologists. They decided that Elena needed to be transported to the P-ICU, and hospital rules state that she had to arrive in an ambulance, even though the surgery we were in was just across the street from the hospital and I mean literally. I wasn't allowed to go in the ambulance but Jen and Emma were, so I walked to the hospital, got in the normal lifts and went to the floor the Ellie was going to, only to discover that I had beaten them there by about 2 minutes. It was like pooh sticks but with people and no pooh - well apart from a little one that Ellie had done. Boom and indeed boom.

If I only had a heart.........

Well, what a difference a week makes. On the way home tonight I was thinking hard how I would start this entry off, and on came Everybody Hurts by R.E.M, and the line take comfort in your friends has never rung so true as now........

Ellie is back in Intensive Care. We had our weekly cardiologist meeting and he was unhappy with the way the valve on her left side of her heart is performing, and so she needs to have heart surgery next Tuesday afternoon. They are basically going to replace the valve with another one of her own. The one she has the difficulties with is the one that provides blood to her body, and they are going to move the one that provides blood to her lungs. Once they have done that they are going to put a mechanical valve to replace the one they have moved - make sense?

So all those years ago when I played the Tin Man who needed a heart in the Wizard of Oz and now my daughter needs a heart, I truly wish I could give her mine. Once again she is filled with tubes to help her breathe and to eat, and they are trying to bulk her up at the moment so that she will be strong for the op.

I tried to think of the best title I could, and originally this was going to be called Hanging on in quiet desperation is the English way, but I am in California now and have a positive can do attitude. Also Arnie had the same op and look at him - Governor of California (oh and breaker of leg whilst ski-ing, so not the best example). I was also going to call this Take a chance on me, because of the risk factor involved in the op. The surgeon has warned us that there is a 10-20% risk factor - which is surgeon speak for death. Wow what a great name for an indie band "Surgeon Speak for Death".

Speaking of band names the machine that Elena is hooked up to is made by Masimo, I just hope that Jackson did not make the machine on his 4 track at home.

Thank you all to everyone who has provided kind thoughts and well wishes, we are looking forward to meeting up with you and laughing about how Ellie gave me grey hairs (she doesn't need to know I had then pre her).

It has also put my other news on the back burner and that is after 3 months in my current job I have been given a promotion. I now give out the biscuits and the tea in the meetings now!!!!

Yet more Congratulations

I don't know you have a baby and then have to go to hospital and everyone goes and does things. I am happy to announce that Mr Nick "ding-dong" Bell is getting to married to his lovely girlfirend Jude. I met Nick at Uni and being a Yorkshire man he surprised me by being kind, generous and owning all his own teeth (he still doesn't have a whippet so he must be posh Yorkshire).

Obviously like many men he almost turned gay when he met me, as this picture shows. The hair I have in this picture was for a bet. I apologise for the crude person sticking their finger up next to us, he was just jealous of Nick getting that close to me.

Congratulations: Foxy

No picture to illustrate this story as Jo would hate it forever, but congratulations to Jo Fox Mills who won the sweepstake on Ellie's birth. Well done, the prize is still in the shop but once I get down there it will be on it's way to you.

Bad pictures

The last entry reminded me, that when we were in the hospital, just after Ellie had been born, Emma wanted to take some pictures of her sister. She also wanted to take some pictures of everyne in the room. Here is her photo of Jen and Ellie. Enjoy!

The Corfe's: An Apology.

I would like to apologise to the Corfe’s as I have found a picture of them together. However, it was taken by my wife, who I think had been drinking so it’s not the best shot ever.

Anyway congratulations once again on getting pregnant we are looking forward to meeting your bump in the flesh.

Golden Gate Hate

It was strange being in San Francisco for such a serious matter. Ellie’s hospital room looked out onto Golden Gate Park and in the background you could see the Golden Gate Bridge. Whenever I am in San Francisco I have to pinch myself. Here I am; a boy from Saltash here in San Fran!! I used to get the same buzz when I was in London. The energy that a big city like London or San Francisco can produce is unbelievable.

I know not everyone feels the same, and I know 2 people who would do almost anything in their power to avoid going to London or any big city but I just like it. And San Francisco is such an iconic city. The funny thing is that Jen can never truly understand the power that San Francisco and especially California has on certain people. She thinks that Britain is the cool place and that California is dull. She has always struggled to understand why people wear California clothes and drink Bud in the UK when we have better clothes and beer there. But that very feeling she has about Britain is the feeling that a lot of people have about California. Yet California is considered a bad place by a lot of Americans. This makes is a good place by definition to me, but I want to try and explain this further.

A lot of Americans don’t like the liberal attitudes that California as a state has to many things. The recent elections returned a Democratic majority and the Republicans have responded by saying that the Democrats are now going to turn the USA into San Francisco – and this is an insult because many Americans apparently fear having a good transport system, higher minimum wage, excellent architecture, shops, theatres and of course great weather.

So back to my original point, every morning I would look out of Ellie’s window with a sense of awe at seeing something that I had seen in movies countless times. It was a strange emotion to have such a serious thing happen whilst in a place that as a kid I never thought I would see.

My heart in San Francisco

I realise that there aren’t that many jokes in all of this, so please stick with me. Ellie was transported to San Francisco by ambulance, but there wasn’t enough room for Jen & I so we drove down. Now the Children’s Hospital in San Francisco is at the top of a very steep hill and when we driving to it we were sacred for our lives, because half way up this hill you have to stop at a Stop sign, and then you have to try and get going again without rolling back to the car that is behind you.

We successfully navigated our way there, and went to see Ellie who was all settled into her Pediatric Cardiology Intensive Care Unit. Now by this time we were used to what would happen, the nurses would do all the work and then the Doctors come strolling in like rock stars and give you the diagnosis and tell the nurses what to do. Also the Dr’s would ask us the same questions that everyone else had asked us, so much so that we started answering questions before they have even been asked.

Hats off to them though, everyone we met was great and put us at ease and talked us through everything is a way that we could understand them.

Ellie had her procedure on Thursday 4 January and everything went better than expected. So we are now home and Ellie is slowly gaining weight and is certainly more awake than she used to be. We have to go and see the cardiologist once a week but at least this is in Sacramento. My work have been very understanding and have allowed me as much time as I need, but I finally accepted defeat and came back to work on Wednesday. I had to take yesterday off to go with Jen and Ellie to the cardiologist, but am back today.

Ellie will need open heart surgery at some point but we don’t know when. She has some other minor problems but I don’t want to go into all that and bore you anymore than I need to. She is beautiful (I am biased) and we are confident that everything will be ok.

Problems

Ellie slept and ate an awful lot and didn’t seem to be gaining any weight, so we went back to the Dr’s and she had dropped to 5lbs 15 oz. So they took a listen to her heart and discovered that she had a heart murmur. We were then sent to Casualty (or the ER as they like to call it here) where they were expecting us. We were transferred into the Pediatrics Emergency Room where they did loads more tests.

They confirmed that there was a problem with her heart and so we were moved to the Pediatrics Intensive Care Unit (P-ICU) from there they did loads more test and we met another 4 or 5 Dr’s. In fact in the space of 24 hours I met more Dr’s than I have ever seen in my whole life.

The upshot was that Ellie’s left bottom chamber of her heart was too small and too thick (sounds an awful lot like the thing my 1st ever rugby coach said about me), with the outcome that it wasn’t pushing enough blood through which was putting more pressure on the right side of her heart. The only way to solve this problem is through open heart surgery but there is a procedure where by the enter through her groin and put her balloon into her heart and “pop” open the chamber to see if that would help. Normally they could do this procedure and operation in Sacramento but the surgeon was on holiday so we were going to be transferred to San Francisco.

To take the pressure of her heart they inserted a breathing tube into Ellie, they put an IV drip into her arm and they stopped feeding her. This was horrible to see and my beautiful little girl was turned into some horrible creation from Wes Craven’s next movie.

The Bump arrives

Ok so it’s been a long time since I lasted updated, and for that I apologise. As most of you know the bump finally arrived on 18 December 2006 at 18.08 PST. She was 7lbs and 4 oz and 19 inches long. She was around 3 weeks early as she decided that she wanted to come in time for Christmas.

The whole experience was strange. Jen’s waters broke at 4am and I leapt out of bed and was surprisingly awake for such an awful hour. We drove to the hospital and we both commented at how many people were up and about on a Monday morning. We got to the hospital and checked in (if that’s the correct term?) and then nothing. Not a thing. Oh Jen got the odd contraction but apart from that we just sat there, watched TV, played cards, walked. Jen wasn’t allowed any food so she continued to get grouchier and grouchier. Finally at 3.14pm everything kicked in and Jen’s contractions went from every 2 minutes to being on top of one another.

Elena Bethany Burr entered around 3 hours later looking very blue. I am man enough to admit that I cried during the birth, because I had never seen anyone in so much pain. The movies just don’t do justice the agony I felt watching my wife go through agony.

Ellie was later diagnosed with Jaundice and whilst her levels of this were high there seemed to be no problems so they sent us home on the Wednesday after. We went to the Dr’s and her jaundice levels were continuing to rise so the gave us a UV blanket (called a billiblanket) which Ellie had to be 24 hours a day. We then had to keep going to get blood work done, including a trip to the hospital on Christmas day (it was the only place open to do the test). Finally a week later we were given the all clear and so with Ellie’s levels normal we went to Yosemite to visit Jen’s parents.