Saturday, March 08, 2008

One year today

Unbelievably, it's a year today since Abigail died. It will be a difficult weekend, of course, but for us it's just a date and we'll be spending some time together as a family today. We'll be using her birthday anniversary in September much more to celebrate her life, rather than commemorating her death. Of course there have been many memories brought back over recent days of what was happening a year ago when Abby was in hospital: the decisions made, the unfolding of events and how we were feeling then. But now as then, we remain so enriched, blessed and grateful for the experience of caring for Abigail Erin. Whilst tragedy and heartache was never far away, Abby will always be a highlight of all our lives.
Abby, you have your brighter day. We'll see you soon. xxxx

Monday, November 12, 2007

Abby's donation fund to close

Abby's ladybird emblem
This month we'll finally be closing Abigail's memorial donation fund, with the total (including recent interest from the bank) now at an incredible £4124. Thank you so much to everyone who very generously donated - we are really touched. This means that Demelza House Children's Hospice, the Phoenix Centre Pre-School and The Evelina Children's Hospital will each receive around £1375, which is amazing. Thank you again!

Sunday, July 15, 2007

Classic pic: Nix and Abby in France

Nix and Abby
This classic photograph was taken in August 2006 when we were holidaying in France. Many of you will know that ladybirds seemed to become synonymous with Abby for us as a family. This was because what little vision she did have was stimulated by strong, bold colours like red, white and black, and we'd planned to decorate her bedroom with a ladybird theme. On the holiday park where we were staying there was one of those old slot machines where you put some coins in and try to grab a prize with a small crane. After a few attempts, we managed to get the soft ladybird toy that Nix is giving to Abby here. Abigail was just short of three years old here.

Wednesday, May 09, 2007

Classic pic: Abby and Kitty

This week's classic photo was taken on Boxing Day, December 26th 2005. We'd popped in to our friends Martin and Rachel's house and whilst we were there snapped this pic of Abby and her friend Kitty on the sofa. The two girls were born just weeks apart but of course with very different outcomes. Parental hopes of a lifelong friendship between Abby and Kitty initially seemed to have been dashed, but actually that's exactly what happened. Kitty really took to Abigail. This photo, when both girls were around two years and three months old, is a lovely reminder of that unspoken spark between them.

Wednesday, April 18, 2007

Classic pic: In the garden

Abby in the gardenThis week's classic photo is a picture we took of Abby when the kids were enjoying the sunshine in the garden at our old house one summer's day. It was taken on the afternoon of 8th June 2004 so Abigail was nine months old. The photograph is significant because it was taken in the very short six week period after Abby had at last come home from hospital but before she went back in due to epileptic seizures.

She'd just been discharged from Guy's hospital PICU after her gastrostomy operation and subsequent seizure episode. We had her home for just a month and a half before she was re-admitted to our local hospital with more epileptic episodes. This was finally brought under control after a week and she came home again on 23rd June that year.

Although it was really only a recent addition, it seems strange looking back at older pictures of Abby where she didn't have her trademark long curly locks!

Thursday, April 05, 2007

Classic pic: Disneyland

Clearly this blog will no longer have regular updates on Abby's progress as it once did, but we want to continue adding to the site long term. We intend to post more archived copies of older e-mail updates so that in time, the site becomes a place where Abigail's story can be told, right from the very first update sent three days after her traumatic birth.

In the short term we also want to keep you up to date with Abby's donation fund total and where and how that money will be donated and used. There may also be additional written and audio pieces from the recent Service of Thanksgiving, which astonishingly, was over two weeks ago already!

Finally, we'd also like to add occasionally to the site by posting some of our favourite photographs of Abigail along with a bit about where and when they were taken. Many people have commented on the two videos of Abby and how good it was to see her experiencing so many different people, places and situations. We wanted to show some more of those pics! Here's the first:
Abby and NixThis photograph was taken on the morning of 1st September 2005 during our first trip to Disneyland whilst away in France. This was our first family holiday abroad with Abigail and the kids all loved the theme park. Abby particularly enjoyed this little boat trip and really seemed to take in the lights and sounds of many of the rides. She was nearly two years old in this shot.

Monday, March 26, 2007

Jon Snow on Abby

Jon SnowMany of you will know that Matt works for ITN and we were delighted that so many friends and colleagues from the television news provider were able to journey down to Chislehurst for the Service of Thanksgiving last week. Some of the studio crew from Channel 4 News were among them including its main presenter, the wonderful Jon Snow. Jon was kind enough to write about his experience of Abigail and the funeral in The Sunday Observer this week and also devoted his short Snowmail programme on More4 on Saturday to her. We're grateful for your kind words, Jon, and glad that you got to meet Abby when she visited the newsroom last year!

You can read Jon's diary from last week (including the funeral on Tuesday) here, or watch the edition of Snowmail below. We're grateful to the More4 and Channel 4 news teams for allowing us to reproduce the programme here.

Welcome to Holland

Abby as an angel at her Christmas nativityThis is the piece that Mary Nightingale read out at the Service of Thanksgiving, which really sets the scene of what it's like to have a child with a disability. It was originally written some twenty years ago.
WELCOME TO HOLLAND
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous holiday trip – to Italy. You buy lots of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, go away, because the loss of that dream is a very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.
©1987 Emily Perl Kingsley

Sunday, March 25, 2007

Photos from the service

Here are a few pictures from the Service of Thanksgiving last Tuesday plus a photo from the cemetery.
Inside Christchurch Raising the roof with the singing!
View from the side Abigail Erin

Thursday, March 22, 2007

Abby's Story (Part I)

Click for a larger imageHere is the text of what Matt said at Abby's Service of Thanksgiving before showing the original Honest Questions About Abby video and collection of photos. The video features Daniel Bedingfield's beautiful song Honest Questions which has helped us enormously in coming to terms with Abby's condition.
As most of you will know, Abby’s story started in September 2003 when she was born by emergency caesarean-section after difficulties in the womb. She spent a month in special care, where it was discovered she'd suffered "catastrophic" brain damage due to a lack of oxygen before birth. Abby was in hospital for the first nine months of her life and nearly died on several occasions.

When she finally came home to be with us as a family, we had to get to grips with a very different kind of parenting. Abby suffered from severe cerebral palsy, severe epilepsy, had very little control of her limbs and was nearly completely blind. Doctors said she may live for twenty years or "she may not make her first birthday".

In January 2005, Abby defied the doctors’ worst prognosis and reached sixteen months old. During that time, Nix and I had struggled a great deal in coming to terms with Abigail's condition. We had many questions about what had happened, what could’ve been, and how to reconcile our faith through it all. Some of those questions will remain unanswered until we too get to heaven.

Two years ago we collected a series of photographs from Abby's life and made it into a DVD. It depicts a journey from those awful early months through to happier times at home with us. We wanted to show that although Abby's overall prognosis remained very bleak, we had begun to see some "brighter days".

The video is a testament to how far we’d come as a family in that first year and a half. A testament to how far Abby had come. So this is part one of her story. These were our ‘Honest Questions’.

Abby's Story (Part II)

Abby's smileHere's what Nix said at the Service of Thanksgiving before introducing the second collection of photographs from Abigail's life and the You Say It Best video. It features the Ronan Keating song When You Say Nothing At All.
When Abigail was born three and a half years ago, our lives were turned upside down and indelibly marked forever. We had chosen the name Abigail because of its meaning, “Father’s delight”, but the first nine months were anything but delightful.

In those early months our one aim was to get Abby home – to live with her as part of our family and to make memories. And, as you’ve seen, we did that. Abigail became an integral part of our family. We learned to adapt to her needs and though her care was not always straightforward it was never a chore, because Abby made it easy.

Abby needed much, but demanded little. She had a presence that could not be ignored; she engaged people. Since her death many people have said how privileged they were to have met Abby, yet she could not see or talk or reach out and touch people, but she communicated in a way that is unexplainable.

It was our privilege to be given the task of parenting her. She has taught us so much. We know what it’s like to love utterly, without conditions, and we’ve experienced at first hand the good in people. We’ve come to know many people who selflessly spend their lives trying to make the world better for people who can’t do it for themselves. To have experienced that has been a life-enhancing journey.

Our lives will never be the same; the Abby-shaped hole in our hearts will always remain, but we’re grateful that we shared three and a half years with our very special daughter: Abigail Erin – the “Father’s Delight” who communicated so much without saying a single word.

Tuesday, March 13, 2007

Abby's funeral plus flowers and donations

Abby's third birthday
We'd like to ask that people don't give flowers on the day of Abby's funeral, but if they'd like to, make a charitable donation instead to a central fund in Abigail's name. The money raised will then be divided between three very worthy causes that were an integral part of Abby's life and are close to our hearts. These are Demelza House Children's Hospice in Sittingbourne, the Phoenix Centre Pre-School in Bromley and The Evelina Children's Hospital in central London.

We are very keen that nobody feels obliged to give anything, but we have had some requests asking where people may make a donation. If you feel that's something you'd like to do, then please email us for the account details and how to give.

Thursday, March 08, 2007

Abigail Erin Freestone

16th September 2003 - 8th March 2007

We want to share the news that our beautiful daughter Abigail Erin died peacefully in our arms at a little after midnight last night. We're so grateful that she passed away quickly and quietly after being extubated from the ventilator - she simply fell asleep in our arms. We will forever cherish the time we had with her and the enormous privilege we had to be parents to her. There will always be an Abby-shaped hole in our hearts and family, but her memory, love and character will live on amongst us and we're sure, many of you too.

The prayers, messages, e-mails, texts, phone calls, and practical help offered by countless people over these last three and a half years is a humbling testament to the power of good and friendship in the people who know and love us. Thank you, from the bottom of our hearts. We simply could not have got through it without you.
"Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me."
Love and blessings,

Matt, Nix, Becky and Josh Freestone

Wednesday, March 07, 2007

Abby this evening

We're very aware that so many people have been accessing the website today for news of Abby. We're sorry that there has been no news until now. It's been a long and difficult day, but I don't propose to give every detail now.

After talking to the consultant at lunchtime today, it was clear that Abby has been deteriorating over the last few days. A further chest x-ray this morning showed that Abby's damaged lungs have got even worse and are beyond repair. Tonight, as I write this from the computer at Abigail's bedside, we are entering the final hours of her beautiful, strong-willed, love-giving and yet difficult and eventful life.

She is very comfortable but fading now. Friends and family have been visiting and Abby has had lots of lovely cuddles. She's very settled indeed and very peaceful. We are both spending the night here at the hospital and we will update here soon. We're so incredibly grateful for the love and support of so many people.

Overnight and this morning

I'm afraid Abigail hasn't had a good night and it looks likely that she's beginning to deteriorate. Nix was called and went up to the unit to see her at about 2.30am this morning. Abby had suffered some more episodes of very low heart rate and desaturating oxygen levels. Doctors are very concerned about this. She was given some morphine to settle her and stabilise her heart rate and saturation levels, which it did. In addition to that initial dose during the night, Abby is also now on a continuous IV infusion of morphine. We will be speaking with the consultant this morning about her situation and prognosis.

Tuesday, March 06, 2007

No real change as yet

The wonderful staff nurse LucyMatt cuddles AbbyMonday showed no discernible difference in Abby's condition despite the steroids she's been given, although doctors don't necessarily expect to see results just yet. Matt had another long chat with one of the consultants who said it could take three to four days before any improvement from the steroids is seen - if it works at all. Likewise, Abby has been put onto another antibiotic to fight an additional chest infection and it will be a similar timescale before it's known whether this bug has been cleared. We're really looking at the end of the week before doctors will be able to make a reasonable assessment as to whether the steroids and antibiotics have done their job.

Matt was also able to talk through some questions and issues with the consultant about what options might be available after that time, and what protocols would lead doctors to conclude that little more could be done for Abby.

Abigail enjoyed a lot of visits yesterday and was very settled indeed in the evening, with a steady heart rate and saturation at almost 100% - almost as if to prove (like we need telling) that she is still fighting.

Matt, Nix and AbbyOvernight yesterday into this morning, nurses reported that Abigail had suffered several episodes of a very low heart rate and desaturation. This was a concern to doctors because they had no immediate explanation as to why she might do that. Abby also had quite a lot of diarrhoea overnight too, despite the fact that she has been off her normal milk feeds for two days and is just on maintenance IV fluids.

Today, Abby's wonderful nurses gave her a bed-bath with strawberry scented creams and lotions and also another hairwash to bring out her amazing curls. It was also Matt's turn for a long cuddle in the comfy chair with Abby today, and this required two nurses and a military-style logistical operation to disconnect and reconnect the many lines, wires and tubes into Abigail. But it's been really good for both of us to be able to do that.

Overall, we continue to wait for the steroids and antibiotics to do their work and then see where we are by the weekend, but we are both increasingly pessimistic about Abby's chances of surviving this ordeal. We have been able to talk quite a bit to various people about choices we may have to make, how Abby will feel, and even life afterwards should she die, so we are certainly doing all we can to prepare ourselves for that scenario. In particular, we have sought advice about how to help Rebekah and Joshua through all this.

There is still some hope, of course. But it's now decreasing with each passing day.

Monday, March 05, 2007

Quick morning update

So far, after Abby's loading dose of steroids last night, there seems to be very little difference in Abigail's breathing. She is still working hard with no discernible change as yet.

Sunday, March 04, 2007

Options now limited

Abby and fibre opticsSo after a slightly brighter outlook yesterday (Saturday) with the news that the latest chest x-ray was clearing and that the pneumo-thorax had dissipated, we were disappointed to learn that Abigail didn't have a great night into Sunday morning. She was unsettled, didn't sleep much and had another tachycardic (high heart rate) episode. Doctors feel that this may simply be a kind of panic attack over the low pressures on the ventilator; that she is 'fighting' it too much. Doctors felt it necessary to administer a dose of Lorazepam to calm Abby down. Unfortunately this is also a respiratory repressant so Abby's low ventilator pressures went right back up to 16. She was also running occasional temperatures and dropping her oxygen sats overnight, so all in all, we were down this morning and felt that things had taken yet another step back.

No chest x-ray was taken today (Sunday) as doctors decided that any improvement in her lung function would be minimal and that there was no evidence of another pneumo-thorax. Doctors are very keen indeed to extubate Abigail to avoid another crippling infection taking hold. Infections are almost guaranteed on ventilation because of its invasive nature, and the longer you are ventilated, the higher your risk of infection. This afternoon, in an effort to get a real sense of where Abby is on her lung capacity, doctors dramatically reduced her pressures from 16 to 10. This was the lowest she'd yet endured and is approaching the kind of levels required to extubate.

We noticed an almost instantaneous increase in the workload Abby was undertaking to breathe. She was labouring much more, but just about managing to keep her sats up. She lasted around two hours at that level before doctors took a blood sample to measure her blood gases. The results showed that whilst Abby's ability to expel carbon dioxide was actually pretty good, she was simply not getting enough oxygen into her blood. This gave a very clear benchmark for the consultant to say that Abigail was just not ready to be extubated any time soon. Doctors increased her pressures once again to 14 and Abby seemed more settled.

This evening, shortly before Matt came home for the evening, one of the doctors sat us both down to explain the options for giving Abigail some steroid drugs. Steroids can really assist in clearing the lungs of mucus and inflammation in cases of very severe lung damage. Children who are given steroids can often be extubated successfully very quickly afterwards - it provides that last bit of help needed to make the lungs work to their maximum capacity despite their damage. The doctor explained that the medical team felt Abigail had now reached a plateau of reliance on the ventilator where she is not able to cope with the lower pressure required for extubation, and doesn't look likely to be able to soon.

A difficult decision arises because it is perfectly possible for us to leave her for another week and hope that she can be slowly weaned down to the appropriate levels, but this runs a huge risk of infection which may well overwhelm her. Or she simply may not ever be able to cope with lower levels, in which case we are effectively waiting for the next big bug to strike and making Abby work extremely hard in the meantime.

Alternatively doctors could administer steroids and hope that the drugs offer that last bit of help in reducing the inflammation in her lungs and weaning her off the ventilator. But there is always a downside to any treatment. With steroids it's that the drugs dramatically reduce the immune system's effectiveness. This means that whilst the drugs may well help with her lung function, Abigail will almost certainly be even more susceptible to another infection. The dilemma is that steroids now provide one of her last chances at survival and if we deprive Abby of that chance, there's every risk that she would be overcome by an infection anyway if we leave her ventilated for much longer.

After a lot of clarifying questions, we both felt that we wanted to continue our policy of giving Abigail the best possible chance at every opportunity, and so we've decided to start steroid treatment. In fact, Abby has already received her first loading dose this evening. Doctors will administer the drug over 24 hours and they expect to see an improvement (if it works at all) by the end of that 24 hours. An improvement would manifest itself as Abby being able to cope with lower pressures.

If the steroid treatment doesn't work, we've almost run out of options and it would simply be a case of leaving her on the ventilator to see if she could be weaned off in time. We wanted to take a positive step to help Abigail and so we've made that decision. Even if it results in no better lung function and another infection does strike, we hope that we'll feel we did the right thing for Abby at the time. We also feel that there needs to be a resolution to this illness soon - one way or another - for Abby's sake as much as anything.

And still she fights. We've been told this so many times over the last two weeks, but this time it couldn't be more stark: the next 24 hours are critical.

Saturday, March 03, 2007

Deterioration, then a slight improvement

Matt, Nix and AbbyMany thanks to Dad and Kerry for helping update the blog yesterday whilst we were both up at the hospital. We were very keen that people who are kind enough to keep up to date with how Abby is doing were informed of developments yesterday. It was certainly a very difficult day indeed after the apparent improvements midweek.

We both noticed on Thursday that Abby seemed to be working a bit harder on her breathing and she just looked distressed and not right. She often became difficult to saturate, too. That evening, as Dad has recounted, she had a difficult 'episode' lasting about 90 minutes where her heart rate was around 200, her respiration was 75 and her sats were low at about 80. She was clearly in distress, gasping for air and doctors were baffled as to the cause. There was obviously a major problem and over the course of Thursday evening, the joy of Abby's apparent improvements on Tuesday and Wednesday disappeared. She now appeared to be in a critical condition again. Doctors administered a sedative drug to help calm Abby down and she had a reasonably settled night.

As has been written, an x-ray on Friday morning revealed a pneumo-thorax in her right lung, which is one or more pockets of air in that have escaped into the chest cavity because the lung is breaking down and partially collapsed. This can become very dangerous if enlarged and can sometimes incur an emergency chest drain. This was clearly the reason for Abigail's 'episode' the previous night. Doctors opted not to do anything straight away as it can occasionally dissipate of its own accord. Abby's ventilator settings were increased again, she was offered more oxygen and she was put back onto a steady respiration rate on the machine.

Friends and family visited again on Friday afternoon, including Rebekah and Joshua, who we pulled out of school early in order to come and see Abby in preparation for the worst happening. After the news midweek that Abby was making improvements, once more we had to tell our children that Abby was very poorly indeed and that she may die. Becky and Josh were again very upset but they have both been amazingly brave and resilient these last two weeks.

It also transpired that on top of the pneumo-thorax, Abby appeared to have another infection somewhere as she was often spiking a temperature and had regular diarrhoea. When speaking with the consultant on Friday he said he was "very worried" because the situation and chest infection could quickly overwhelm Abigail. He explained that although Abby did indeed make clinical improvements on Tuesday and Wednesday, these were limited to her immediate signs: heart rate, saturation, blood pressure and respiration. She also seemed a lot better in herself because she had come off morphine and was much more awake and alert. Although this was all true, the fact was that during that time, there was actually no improvement in her chest infection at all. We did know this, but were hoping that the x-rays would mirror her bedside improvements later on. It wasn't that we were misinformed, but merely that her clinical improvements never were followed by progress in her lungs. There was also concern from the doctors that many of the major antibiotics had already been used and that a new virulent infection could prove very difficult to stop.

We went to bed last night fully expecting Abigail to die overnight.

This morning (Saturday), we woke up surprised that we hadn't been called up to PICU in the night. Abby had not had a great night, with little sleep and more temperatures and tachycardic episodes. Abby was relatively stable but still breathing fast and working hard for her air. Another x-ray was taken this morning and we awaited the ward round for the latest on Abigail's condition. During the morning we had the opportunity to hold Abby for the first time in ten days, and we both felt that medical staff were preparing us for the worst.

So we were shocked and surprised when we had a long chat to the consultant to hear that some small but significant progress had been made overnight. The pneumo-thorax had indeed dissipated on its own and was no longer an issue. But most importantly of all, for the first time since her admission, there was real evidence of some progress on her lung damage. Her left lung was visibly clearer on the x-ray and the right one was now free of the pneumo-thorax. Abby's consultant said he was "much happier today than yesterday" and said that if the same amount of progress could be achieved by tomorrow morning, then that would be a clear indication of momentum in the right direction. He said it was a definite turning point but was only a start. He also mentioned that the additional infection Abby is harbouring did not show up on blood cultures, which meant that Abby was fighting it off with her own defences.

It's been a real rollercoaster of a week, but the bottom line is that there has been some real improvement in the last 24 hours of so. But the consultant said that this really needs to be built upon quickly. Abby's lungs need to heal very rapidly and she needs to be weaned down on her ventilator pressures quickly if she is to be extubated. The longer Abby stays on a ventilator, not only will it be harder to wean her off it, but much more importantly there will be a much greater risk of further infection. They are almost impossible to avoid with an invasive life-support procedure. The consultant said that if we can get two or three clear days with no more infection and Abby can tolerate getting her ventilator pressures right down, then she will stand a very much greater chance of recovery without the ventilator.

It seems ironic that the thing that exposes the greatest risk to her life in the short term is the very thing that's keeping her alive! If she can tolerate a rapid weaning process, it's possible doctors may try to extubate her on Monday. If Abby remains dependent on the ventilator at her current levels for another week or so, then that would probably indicate that recovery is unlikely.

So after such a low yesterday, today seems brighter once again, if only a little bit. Abby will have to work hard over the next 48 hours if she's to come off life-support. It could be uncomfortable for her. And whilst it's possible that she could might tolerate a reduction in pressure, be extubated on Monday and make very rapid progress from there, it's also just as possible that she may be extubated on Monday, not cope without it and require re-intubation. But doctors won't know until they try. Things really are still very finely balanced, but we're hoping that the genuinely positive progression on her lung disease gathers momentum tomorrow.

More than anything, we'd both like a resolution to this awful time soon. A long protracted recovery is OK, as long as there are clear indications of that direction. What we don't want is another few days (or week) of stability but no progression or regression. Abby doesn't deserve either of those scenarios. We'll see what tomorrow brings.

Friday, March 02, 2007

Auntie Kerry writes...

Hi, Auntie Kerry here, Matt's sister. I am also just back from the hospital. Thankfully Abby was pretty settled while we were with her and it was good to spend some time with her.

I just wanted to reiterate the thanks that Matt, Nix, Dad and Mum have expressed. During an incredibly difficult and turbulent couple of weeks the prayers, words of encouragement and practical support has been, literally, a God send.

What an incredibly brave, courageous and beautiful little girl. We love you heaps Abby.

Auntie Kerry and Uncle Chris xxx