Holly died a year ago today

Holly, one year ago.

It was exactly a year ago today (3 March 2012) that we raced like maniacs from Sutton B&Q to the resuscitation unit at St. Helier's. It was a year ago today we were told that Holly was brain dead and there was no activity behind the eyes. It was a year ago today we were THEN told she was successfully revived. It was a year ago today we began our month's residency with the amazing folk at Evelina Children's Hospital.

I keep thinking sometimes that in a parallel universe somewhere (OK, I've been watching WAY too much Fringe lately) Alternate Sue and I are visiting a grave today and wishing beyond wishing that what happened hasn't actually happened. I can't begin to imagine what our lives would be like, what mental state we'd be in had the alternate reality happened. Thankfully we haven't had to find out.

Not to say the past year has been without it's problems due to this - we've had medications, therapies as well as a diagnosis of Choreoathetosis, which is a type of Cerebral Palsy where there are too many unwanted movements. At the moment, we've been told worst case scenario is wheelchair and never walking - but that's worst case.

It's been a long year and we made it through. I'd like to thank everyone again one year on for their wishes and prayers and I would be utterly remiss not thanking all the professionals and specialists who have been working with us to ensure that Holly's little brain recovers as much functionality as it possibly can.

Holly is home. For good.

Holly as she is now. At home.

After a whole month in one hospital or another, Sue and Holly finally came home for good tonight.

It's been quite the trying month, starting with Holly's cardiac arrest on the 3rd of March and culminating in her being well enough to be discharged today, albeit with a bevy of drugs and a physio plan.

It's going to take some adjusting to not having the hospital around us. For Sue, Holly and myself it will be that safety net the NHS provides, with doctors and nurses only a raised voice away. For Emily, it will be having her family back in one place - mummy and daddy in the same building, sleeping in the same bed and "the baby" back to disrupt her rule of the roost.

In the last few hours, Emily hasn't been as ambivalent towards Holly as she normally has. We've even got her to give Holly a kiss which she has willingly done. I don't believe this is the start of any great thawing of diplomatic relations yet, but it might at least be a small amount of acceptance on Emily's behalf.

Now with Holly back and the family unit together again, we're about to attempt our next great hurdle - taking Holly on an airplane. We've got a week booked in Northern Ireland. The doctors and nurses see no reason Holly CAN'T go and we have an introductory letter for any hospital or doctor we need to contact outlining the story so far.

Now that Holly has spend 1/3 of her life in a hospital (including her initial birth stint) we're hoping not to have to see the inside of one for a long, long time.

Incredibly hard times for Holly

As I type this, we've well and truly entered week 2 of Holly being in hospital.

Holly shortly after being admitted to ICU.

We've reached a few milestones in that time, but the hard fact is - she's still in hospital.

Sue and I have managed to keep people updated on Facebook with daily updates, which has been a Godsend. In the "olden days", we would have had to maintain a list of people to contact and ring round to give them all an update. Now we post on Facebook and watch the "likes" and replies come in, so we can get back to the very necessary job of worrying.

For the uninitiated, and to make a reference in this blog, here are the facts from the last 10 days.

On Saturday 3 March, we were shopping in B&Q and Holly was feeling a bit aggravated. She was in the Bush Baby carrier and Sue was attempting to feed her as we walked around the lighting section. After a few minutes, Holly went quiet so we thought she'd fallen asleep after having a quick drink.

When we got to the car a few minutes later, she was blue and lifeless and her eyes were open, rolling back into her head. I sat in the back with her and called 999, while Sue drove like a woman who's child was about to die, all the way to the local hospital... about 10 minutes away.

On the way, Holly eventually did die in my arms.

Once we got to the hospital it was a mad rush for the resuscitation  unit to bring her back to life, which they eventually did. It was touch and go how well she was going to be, but they were eventually able to give us some optimistic news.

The retrieval team from St. Thomas' hospital in Lambeth eventually arrived and whisked Sue, Holly and myself to the PICU ward at Evelina Children's Hospital.

Over the next few days, tests were run to determine if she was ill on that Saturday; drugs were given to help her and her temperature was kept low to keep brain function to a minimum and give it time to recover.

She's been having intermittent seizures which are to be expected given the "insult" (their words) her brain has been dealt and we just have to wait to see what kind of brain damage she'll be left with.

Certain milestones have been reached which we've been told we can view as positive. She had her ventilator removed on Thursday, and she was discharged from ICU on Friday. She's now in the neuro ward in the hospital where the care is not 1 to 1, 24 hours a day, but they are better suited to dealing with children with neurological issues.

This week is going to be a very difficult week as the doctors and nurses play around with drug levels to try and find out which ones and which levels work best for Holly.

All this time, Sue and I have to endure the unknown - will she cry, will she coo, will she focus on us or objects, how much brain damage is there, what is temporary and what is permanent. It's all a guessing game and it's made all that much harder as the only one who can tell us any answers is Holly, and she's going to take time.

Sue and I both feel that our lives are in limbo at the moment and they are. We've received the most incredible support from almost everyone we know. Our friend Mo has given us a bolthole to stay at while we go through this; our other friends have dropped in to see us and Holly and provided us with food and drink to offset the crazy prices at the hospital. The well wishes from people on the internet and stories of other children with epilepsy or similar situations has given us hope that we can help Holly overcome this.

I feel like the entire Internet is rooting for us, which is a bit selfish I guess, as I saw 19 other beds in ICU that needed the love and support we were receiving as well.

We've received one miracle - having our baby come back to life. We're just hoping that lightening can strike twice and Holly recovers from this as much as is possible.

Thank you again to everyone who's got in touch, it's kept us going.

All's well.. Clicky-hip update

Sue and Em came back from the hospital yesterday and all is well.

Emily doesn't have clicky-hip, and will probably grow up to walk normally and unhindered.

Hospital today

Sue is taking Emily off to the hospital this arvo for her hip scan.

They'll test whether she needs a cast to correct any clicky-hip issues.

My cousin had this, but it was caught a tad too late and they had to have her in a cast longer and much later in life than is the norm. One of the babies in Sue's post-natal NCT class has been afflicted with this malady already.

Here's hoping all is well.

Not fun anymore?

Emily's becoming quite the moody baby. She sits and smiles at you for moments on end, then for no reason, will turn on you like a pack of dogs on a wounded deer. There are all sorts of theories on why this is - ranging from boredom, to wind, to hunger, etc. It doesn't really help at the end of the day when you've just had 20 hours filled with a constant "whhhhhaaaaaa".

Hopefully this, like all good AND bad things, will pass ... and soon.

On a good note, Emily is either sleeping more through the night, or not making enough noise to wake me up. Having said that, I don't really need an alarm clock with her in the room. I was awoken at 6am this morning by "cooing". The perfect father out there would have taken the opportunity to play with baby, taking her into the living room to enable mummy to sleep. I just put a pillow over my ears and wished for her to fall back asleep so I wouldn't be a zombie at work.

Ah, the follies of parenthood.

Crashed out!

My two ladies are fast asleep in our bed. Sue managed to hold it together when we got home long enough to have a much needed shower, open a card and present from me and feed Em.

On the way home, we stopped in at Mothercare for a nursing pillow which Sue went in and bought (as she needed the loo as well). On returning to the car, she announced that someone had forgotten they'd just had major surgery. We then went to Asda for a few bits and our initial plan - walk around the shop with the baby in her basket in the trolley went out the window. Sue sat in the car feeding the little breast demon while daddy did the shop.

Waiting for Sue to wake up now before I order some take away to celebrate our first night in the flat as a full family.

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Now playing: Moby - I Feel It [Contentious Mix]
via FoxyTunes

Going home

It's Tuesday and we're heading home.

The doctor and mid-wives have been round to check on sue and emily, taking sue's blood, making sure breastfeeding is done right and working Emily's legs like you would a chicken you're about to stuff.

The next phase of Emily's life - the one in her home away from St. Helier's begins this aft when the paperwork is done!

Tests

Another test came back with good results - Emily isn't jaundiced enough to stay in for a few extra days, so we can go home tomorrow!

Em is a bit yellow, but it's not in the blood so that's good news.

Day two

Back at hospital being regaled with Sue's tales of no sleep and baby bonding.

As it's Monday, there's loads of people milling around now - physios, druggists, etc. It's quite different from the skeleton crew over the weekend. There's also construction workers making a hell of a racket.

Got my rellies visiting today - mum, gran and aunt. They'll be here about 3.

Before then we're to get a lesson in bathing Emily, who still has uteris juice on her matted hair.

Sue thankfully has been able to move around enough to shower, etc. Today we're going to go for a walk - down the hall and back. Tiny steps!

I also got a call from work today. It's odd how being in your own little universe can detach you from reality. Nice to have the call and be pulled back down to earth. Going to get a newspaper today to make sure nothing major has happened since Thursday.

Day in hospital

Spent the day in hospital with mummy and baby. Changed baby, got mummy lunch and dinner from the kitchen (nhs food IS dreadful) and managed to get a couple of gifts delivered - chocs and flowers.

We entertained some visitors today on ward and expect a few more tomorrow.

Took some more photos to bolster my Facebook gallery as well. All in all a well spent rainy Sunday.

I even have some laundry to do when I get home.

Emily was crying this afternoon and first instinct is to wind her (since figured out that action takes more than a couple of minutes). After that I checked her diaper. There was a smear, but not even enough to scrape on toast (continuing the Bovril thread here). I asked the mid-wife if that was enough to change her or if I should wait for a good nappy full. Of course I got berated for asking that, and began to change her.

Didn't have to wait too long to figure out where the rest of the poo was, it started leaking out like tar from a toxic waste pipe. Not being fully ready for this I jumped to action while giving Sue a blow-by-blow or poo-by-poo breakdown, which lead to much laughter on her behalf, which then led to much pain from Sue as well.

Got things under control eventually, changed Emily and all was well, but that was a crappy thing to do!

Day one of having a baby

Woke up dazed at 9am and trundled down to the hospital with clothes for emily and provisions for sue. As sue is c-section victim, I have to do everything for her, which is cool. For the first time in this pregnancy / birth I feel useful!

I've been to the ward kitchen for food and held Emily while Sue winces in pain. I've even attempted to wind Emily.

Sue and I have managed to changed Emily who is pooing bovril. If only I had some toast!

Home now

I managed to steal away for the evening, leaving Sue and Emily behind in the delivery room. According to the mid-wife, they'll be transferred down to the post-natal maternity ward this evening.

I've brushed my teeth, trying to remove some of my chocolate-based food from the day from my mouth. Also packed up some extra outfits for Sue and Em ready to go back tomorrow.

Still wondering how to play the visitor game. As Sue and bubby are in hospital for a few days, do we let people come visit - especially tomorrow as it's Sunday - or do we get them to come to the house on Easter Weekend?

On a lighter note, this baby's already cost me money. The car park at the hospital cost £24 for just under 24 hour stay. OUCH! A taster of things to come I guess.

What to do

Both baby and mummy are catching 40 winks and I'm sitting around like a third wheel. Kinda tired and hungry, but bored of the food option - a variety of chocolate based sweets.

I kinda want to go home, but feel sorta selfish. Sue can't eat from the op and I'm complaining about about the snack variety and now I want to go home - not to get away from my fam but to lay in a bed and eat something savoury. Besides, who would choose to hang in a hospital if there was a choice?

All fine

Sue's stomach hurts and Emily is sleeping. The family is doing fine.

Sue's groggy and I'm exhausted but it's all good. Going home later and will get mum and baby new clothes, as they're going to visit hospital for about 3 days now.

C-section update

Sue's been shaved to allow for c-section access and they're going to size me up for scrubs so I can hold sue's hand in theatre.

I read in one of our books that they put a sheet up so don't have to watch the op.... Which is good.

The consensus amongst the practitioners here is we have a monster baby - around 9 or 10 lbs. Sue's eyes watered at the thought of passing that. Maybe nature has a way of handling these larger loads cuz it doesn't look like it's coming the normal way.

Exam again

The new team have just come round to look at Sue and said they'll probably let her go until lunch time and then do a c-section.

Hard to think we've endured the last 15 hours or so, when it could have just ended c-section-wise at the end.

The midwife we had over the night said that Sue would be up and around within a day of the c-section, but obviously lifting heavy stuff will be out for a while.

We were so optimistic when we arrived that things would progress naturally, especially when the waters broke about 11 hours ago.

I need food and a drink. My mouth tastes horrible. I can only imagine what Sue feels like / is tasting, etc.

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• Almost one in four births by caesarean (telegraph.co.uk)

Cervix issues

Had a horrid sleep (though not as bad as sue who is hooked up to wires and machines, etc).

Sue's just been examed again and told that things aren't progressing that well. There's to be THREE more hours of syntocin before a plan B is considered. However, the dreaded c-section is now looking quite possible, especially as we're told we could have a "long day ahead of us".

Epidural

Sue's just had the needle in the spine and we're now hoping for some sleep before the fun starts.

She's also been given a local as the hand she has the syntocin jabbed into is hurting a tad.

C'mon sleep, where are ya?

On the drip

Sue's on the Syntocin drip and has opted for the epidural, mainly so she can sleep. Looks like nothing will happen until about 6am now.. 4 hours from now.

Epidural will help Sue sleep so she'll be fighting fit to deliver this tyke is a few hours time. Just wish I had a bed too.