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Isla (21 Feb 2011 - 29 Dec 2012)

Isla and sisters

When we were expecting our third baby we were delighted.  However from the early stages of the pregnancy there were complications. 

I had several bleeds and at one point thought I had miscarried, the bleeding was so bad.  Each time I had my scans all I got was everything is fine no problems detected.  At 20 weeks I had my scan and was a little apprehensive as it was not long after having my bleed.  It was a worrying experience as the sonographer spent quite some time and eventually left the room with lots of my baby's scan pictures and told me she just wanted to check something with her colleague.  At this point I started to panic and my words to my husband were "something is terribly wrong".  However the sonographer returned and assured me it was ok gave me my scan picture and sent us on our way.  I remember flicking through the notes and checking what she had put and I read no defects detected.  I went back to work that day and thought thank goodness for that!

Towards the end of my pregnancy I became really big and I was told by several midwifes that my baby was going to be big possibly 11lb. My other two children had been 8lb (ers) and I needed a repair surgically after my second so was told any future pregnancies to opt for an elective c section, which thankfully I did, as I may have been telling a very different story.  I had a fall towards the end of my pregnancy as I lost my balance regularly because of my size.  I fell on my stomach and an ambulance was called and I was checked over by the hospital, baby was moving so all was good!  A few weeks later I was booked in for my C section 21st February 2011 the date was set!, Yet still I had my worries.  This pregnancy was so different to my other two.  I would wake in the night with terrible pains and cramps, things just didn't seem right!

It was a terrible wet Monday on the 21st that year, I was so nervous about having a c section as not having one before.  I also had this niggling doubt that something wasn't right.  I remember talking my fears through with the midwife.  She asked me what my job was I told her I was An Early Years Special Needs Support Worker, she said maybe your job is causing you to have these fears. I agreed but still had this niggling feeling.  She told me I was first to go down.  Then an emergency came in and I was told I would be second therefore they changed my midwife. 

Brett, my husband and I were all ready to meet our baby girl but when she was delivered something terrible happened.  There was so much fluid we heard a gush and lots of fluid went over the floor,  they struggled to get her and she needed forceps I remember looking up at her as they rushed her away I saw a blue floppy baby, the next thing I heard was "call for the registrar". That was it that magical moment gone and sheer horror and disbelief of what was happening overwhelmed me.  I started shaking and I looked at Brett and he was crying also.  I shook with the fear that my baby wasn't going to make it. 

The registrar came and the next thing I remember was a cry from my baby, it seemed like forever but it was all I needed to hear.  Then the midwife told me that she had some news, they had resuscitated my baby and she then told me about my baby having a cleft lip. At the time I was devastated, my baby had a facial disfigurement, if only that was all!!   On the way out of theatre I saw the midwife I talked to that morning and she looked at me and said "You knew something wasn't right, didn't you? She took over from this point as I feel she needed and wanted to because of the circumstances.  They brought Isla to us with an oxygen mask over her face, they said she was having some difficulties and gave us some time before whisking her away to intensive care.  I held her and to be honest sobbed, what had happened, how could it all go so wrong? 

I was separated from Isla and I went back onto the ward.  I said to Brett what do we tell her sisters they were so excited about their sisters arrival Sian was 5 and Niamh was 3 years old.  We had all planned mommy would go to hospital on the Monday and all being well out the Wednesday with their sister, how wrong were we!  They told me Isla would struggle to feed and would need an NG tube because of her cleft lip. I was so desperate to see Isla I asked to be taken down a few hours after my c section, I was told to rest but I couldn't I needed to see her.  Against the staff's advice I insisted it took a while to get out the bed, I was in pain but that didn't matter, my aim was to get to intensive care as soon as I could to see my very poorly baby.  When I got to Isla I looked at her tiny 5lb body saw lots of tubes and it hit me the severity of the situation and I passed out! I was so mad with myself when I came to and they were rushing me back to the ward, why couldn't I have controlled myself and my shock, now I was away from Isla and I so wanted to be with her. That night the midwife came into me and I was sobbing, she said would you like a picture so you can keep it by your bed tonight.  She went away and brought me a photo I remember holding it all night crying and wondering what the hell was going on! 

The next day consultants came and they said they wanted to do some tests, the words genetics was mentioned, but to be honest I didn't really take it in, I just remember everyone being so nice and sympathetic to me and I couldn't understand why? Isla was here she was holding her own, Yes she had a cleft lip but lots could be done to repair that in the very near future.  The girls came to visit me that day, they were so excited I tried so hard to be happy, we were able to take them to meet their sister.  It was then when I looked at Isla I thought something isn't right her tiny fingers were crossed and her toes and toenails seemed different.  I studied her and at this point I thought maybe she may be blind as she hardly opened her eyes.  There was some bruising on her face from the struggle with getting her out, and the forceps had marked her eye badly. Her sisters thought she was amazing, they noticed her lip and asked a few questions.  That day a consultant mentioned dysmorphic features to us, I started to panic although I think I already knew but hearing it was something very difficult to deal with. 

That night Brett came to visit and we talked and it was from there I started to have panic attacks, they were so frighting as I had never experienced any thing quite like them, it was as if my body was in shock and I would start to shake and just not stop.  It scared my husband so much he would hold me and tell me to breathe slowly as I would hyperventilate also. That night a midwife popped in to see me and I noticed a tear in her eye as I talked to her.  What could be so bad that someone in this profession would shed a tear? I kept thinking what could this be? 

The next day my friend who works in a special school came to see me I showed her the photo of Isla, as only family were allowed to visit Isla as she was in special care unit.  I remember saying does Isla look Down Syndrome to you.  She looked at the photo and I said somethings wrong I'm not sure what diagnosis Isla will have but I need to know.  We spoke to doctors that day, they told us Isla was doing well they had moved her out of the special care unit and we were able to hold her and I even tried to breast feed, we were still awaiting test results from genetics.  I was told at this point that I needed to go home and Isla needed to stay in as they needed the beds.  That was so hard leaving without Isla, this wasn't what we planned it was all so wrong and we were so sad and so very scared.

Once we were home I felt like part of me was missing and the panic attacks got worse and I would often phone the ward during the night to see how she was and how much milk she had tolerated via the bottle.  Then in the morning as soon as we possibly could we would get back to Isla for some much needed cuddles. 

On the Friday morning we went on our visit and a lovely nurse was really trying to help me get Isla to latch on the breast, we kept trying but no joy.  Then a consultant said he needed to speak to mom and dad as soon as possible as genetics results had come in.  He spoke with some urgency and I knew this was what we were waiting for, but somehow dreading. Brett and I had no idea what we had to face and I can honestly say these days with Isla were the most scariest of them all. 

The consultant sat us down.  He asked about my job then he said "Edward Syndrome" and asked if I had heard of it.  I remember thinking no, no I haven't.  Then he told us about Edward Syndrome and it being incompatible with life.  He said in 12 years of being at the hospital he had only come across it three times and two of these babies died in the first few weeks and the other baby got to 18 months.  I looked at him and said "So you're telling me I have to bury my baby someday soon" he said "Yes I am afraid you will and its probably the worse diagnosis I could give you and I'm so sorry".  He also said that the reason that I had never come across it in my job was the fact that these babies don't make it and wouldn't need an early years special needs service.  We broke down, cried, held each other.   At that point someone told us grandparents had arrived in reception and would we like to have a moment with them.  I looked at Brett, how on earth are we going to tell them their granddaughter is going to die soon, how do we prepare the girls for this, what are we going to do? We sobbed and I thought those tears would never end.  We told Brett's parents and they brought Isla into the room and it felt like we were all saying goodbye.  Brett's dad said "Why Isla and not me, I've had my life, this is so wrong" we all held her and cried like we had never done before.  That night we went home to the news that Isla's sisters had entered a competition on the kids t.v  Milkshake, as about two weeks before there was a competition to win a little trikes car which they said they wanted to win for their baby sister, well they won,  I sobbed how could this be, can life get any crueler. They had won something that she could never use.

The next day we arrived at the hospital there was a leaflet waiting for us at the end of Isla's cot.  It was a leaflet for bereaved parents, we couldn't bring ourselves to look at it, it was just too much to take.  We were heartbroken.

Once Isla had her diagnosis there was some urgency in getting her home.  Russell's Hall hospital staff were amazing.  We met Reverend Mark through the hospital who has since become a very special friend and has helped us through some very tough times.  He came to bless her and I spoke to him about having Isla christened as soon as we could.  I had never had the girls christened and thought it would be nice to start making some happy memories by having all three girls christened together.  We were also introduced to Sandwell Palliative care team, who supported us fully on our journey with our amazing little girl. 

We brought Isla home after two weeks of her being born, it was the longest two weeks of our lives.  We knew from this point we would never be apart from her again, well until the time came when we had no choice.  We brought Isla home and we fell in love and she lead the way right from the start.  It was scary times learning how to NG feed, coping with her reflux, endless medication, working SATS machines, apnoea monitors going off in the night, racing to the moses basket scared of what we may find.  My friends brought me the SOFT magazine and they said they had read it and when the time was right for me to read it, they warned me that it would upset me as it had upset them with some of the stories but I felt that they needed to get there head around Isla's diagnosis and felt that SOFT could help me also.  I got in touch with SOFT and promptly received a telephone call.  It took me a while to read the SOFT magazine at least a week or so as I was a little scared what I might read as I knew this was a journey I was about to face and I knew there were no happy endings to this story.  When I read peoples stories of their special babies, yes I cried, I cried lots but I felt I to could relate to peoples feelings, concerns and fears and I suppose it prepared me a little for the future. 

A couple of weeks after she was born, Reverend Mark did us a lovely service at the hospital chapel.  We had all three girls christened together.  We gave them a day they wouldn't forget and this was just the start to the lovely memories they had with their very amazing sister Isla. 

We were very lucky with Isla as she didn't suffer from apnoea's , however I had just got off the phone from a member of the SOFT team and Isla would have been about 4 weeks old.  I went to give Isla her medication at this point she was having her meds orally and she started to choke on her medication she stopped breathing and went blue.  She quickly came out of it but her breathing seemed a little different at first but by bedtime seemed a little more herself.  In the middle of the night I woke up it was so quiet in the bedroom Isla hadn't made a sound or woke for her feed which was unusual.  I woke my husband, I told him I had a horrible feeling and was too scared to look in the moses basket.  We prepared ourselves for the worst.  She was breathing but it was very faint and at this point we had no monitors or sats machine so had no idea of how bad it really was.  We called family and an ambulance immediately, nan arrived to look after the girls whilst Brett and I went in the ambulance this was the first of many callings to the emergency services. We got to Accident and Emergency of a hospital that was more local to our home, rather than the one we had previously been at when Isla was born, as it was linked to the palliative care team so at the time seemed more appropriate.    When we got there we were told it was likely that Isla wouldn't make the night and we could take her home to die or stay on the ward, we opted for the second as I didn't want her sisters to see what was happening.  We were asked to walk to the ward and each step we took I kept thinking shes going we are losing her.  We thought it won't be long as her breathing was so bad she wasn't even put on monitors as I think they felt it would only tell them what they already knew.  We waited all night, like we were waiting for it to happen, preparing ourselves for the worst.  The room we were in was smelly, they had a problem with the drain and it was so cold.  I remember thinking please don't let it happen here it wasn't the right place and I felt the medical professionals had given up on her. 

We had very little medical support that night and were relieved to see members from the palliative care team the next morning.  They sat with us whilst we cried and at this point they talked to us about a referral to Acorns children's hospice.  They talked about the special bedroom and the family being able to be together in the flats at the hospice.  We immediately were put in touch with Acorns and the service we received and still do from them is outstanding, without Acorns I am not sure where we would be now, they have supported us as a family and we owe them so much, an amazing charity who were a massive part of our journey and still continue to be. 

In true Isla style we got out of hospital and she turned it around which was something she would continue to do often!, We visited Acorns and had family weekends there.  They had a spa pool where we got to all go in as a family.  The girls would love this time with their sister in the pool doing normal stuff, in a not so normal situation.  We had nurses, doctors, physio's available whenever we were there so felt very relaxed and felt we were in the right place. 

Over the next month Isla caught a cold and her breathing changed.  I would spend many times in the shower room as advised to help Isla's breathing with the steam from the shower, as they were afraid to give her a nebuliser as it may bring on apnoea's.  I had an appointment with our local hospital and discussed my concerns about her breathing they ended up giving me some nasal drops and sent us on our way.  The next day was the day of the royal wedding Kate and William, we had an appointment with the hospital Isla was born at as she was still under their care for her heart defects and all the medication she was on for that.  When we arrived they took one look at Isla and said can we do some Ob's, they asked how long her breathing had been like it was, I told them of her breathing changing and that the day before we had been at our local hospital who did no Ob's just gave us nasal drops. From this point they put Isla on oxygen, looked at all her medication and supplied us with a sats monitor, suction machine and nebuliser.  It was at this point we realised we must change Isla's consultant and the hospital.  The hospital we were referred to after Isla's birth was treating her like a child that was going to die soon, this hospital was different they were treating a poorly baby, they gave us more time with Isla and some hope for the future with treatment.     The consultant we were referred to was excellent he really supported us and although her prognosis was poor he did everything he could whenever we were in to see she got the best treatment and the nurses, well they became like aunties to Isla, they loved her so much, what an amazing bunch of people we had met on our journey. 

Hospital and Acorns became our second homes, we made many memories at Acorns and the hospital many visits with regular chest infections and many times where we came close to losing her.  At 8 months old Isla started having breathing difficulties at home we called an ambulance and although we had open access to the ward they were full so we ended up on A&E.  It was there she had her second apnoea attack and stopped breathing, the A&E nurse called the ward and somehow we managed to get her a bed.  Doctors spoke to us and gave us the talk we had so many times before about how far we wanted to go with resuscitation, which is a conversation no parent ever wants to have yet in 8 months we had, had this conversation so many times.

Then the apnoea's came one after the other I kept picking her up to remind her to start breathing again.  By this time family had arrived as we had warned them this time was different from the rest and she was struggling.  At this point we made the decision to take Isla off treatment and get her to Acorns for end of life care.  It was the hardest thing we ever had to do but there seemed no other option as she was having so many apnoea's.   We got to the hospice and the hospice were told she may not make the journey as she was so poorly.  Our family and friends arrived at the hospice as I think we all thought this is it, this is goodbye. 

Family and friends would watch in horror as Isla continued to have her apnoea attacks.  She was so very poorly.  The nurses at the hospice asked us if there was anything we wanted to do with Isla that we hadn't had chance to do.  We said we never got chance to take her on holiday to the beach and she'd never met Father Christmas.    Well the next thing we knew the nurses brought the beach to us, with buckets, sand, beach balls etc.  As a family we all sat together playing, Isla as poorly as she was still managed to move her feet through all the sand and was loving it! Isla's godfather had asked all three girls to be bridesmaids for his new years eve wedding.  He brought the girls dresses to the hospice and we had photos in the memorial garden of them all dressed up as we thought Isla won't make it to see this day.  We had been doing various charity work for the hospice and we were doing a fun day at the local soft play centre and Isla had been on all the posters and in the paper to promote awareness of Acorns hospice.  Well the day came and Isla was still very poorly and her day at the local soft play had arrived.  Father Christmas was there, mickey mouse and lots of other amazing people came to support our day and Acorns Hospice.  It was on the morning I had a chat with one of the nurses, he said to me why don't you take Isla to this event, we will get two nurses to escort you and monitor Isla.  I remember saying we couldn't possibly shes going to die? Then he said "well you can sit in this room and wait for it to happen or you can go make some fantastic family memories and Isla can get to meet Father Christmas!"  Well we took Isla on this day with the support of the hospice staff and she met Father Christmas and had a photo taken with him and she stole his heart also! We also met mickey mouse and had family photos taken and the girls loved it.  We were there about an hour and Isla looked completely exhausted from it all so we got her back to the hospice. What amazing memories we made and the hospice staff  plastered photos all over the walls of the family room of Father Christmas mickey mouse and our day at acorns beach and Isla in her bridesmaid dress.  What alot we had done in a week!

Well it had been a week and we had done so much it was a race against time.  The second week Isla became so poorly the doctor put her on MST, which we were informed was morphine, as we were clueless.  On one of the nights of that second week Isla was very weak and still having apnoea attacks I became concerned as I had noticed staff acting a little different and I knew something was going on, so I asked and it was then they told me that two other families had lost children and both special bedrooms were in use, which had never happened before.  They then went on to tell me that they had made a room from one of the therapy rooms and it was ready for Isla when the time came.  I don't know why but I needed to see it as not once had I been there had I ever wanted to see the special bedroom, as I didn't want to think about it until it happened. But this was different Brett and I went to the therapy room and the nurses were right it was ready for her, it was cold, with a beautiful cot, music playing, and mobiles hanging from the ceiling, I passed out in the doorway, I just couldn't imagine my beautiful little girl in there, in this cold room.  Well Isla being Isla she got those nurses running round for nothing and after the second week we decided to take her home as she wasn't any better or any worse and her sisters were travelling quite a way to school everyday from the hospice and we thought maybe go home and see what happens, as we knew Isla loved being at home as she would always smile when we walked in in through the door, she'd look around smile as if to say this is where I should be!

Well we weaned her off the morphine, as quickly as I could. Isla was back to her normal requirement of oxygen and things were looking up.  Christmas was weeks away and maybe, just maybe we would get to have her first Christmas.  

Well she did it! Her first Christmas.  We felt so very lucky to have this day, theses memories, she had fought so hard in that hospice and now we were together for Christmas and that's all that mattered.  We had an amazing day we took many photos and video footage of that day.  One of the first things we invested in when having Isla was a decent camera and video camera.  I would often take photo's, so often Isla and her sisters became very good at posing for photo shoots, we have some amazing photos of our journey!

Then the day came, which we thought she'd never see her godfathers wedding day on new years eve! My three girls looked so beautiful in their bridesmaids dresses, another achievement, another wonderful day which gave us such wonderful memories.  We partied that night Isla was still shaking her balloon until the early hours she was a real party animal!

We had done a christening, then Christmas and next was her first birthday we were so scared to plan as we knew from the stats that we were on borrowed time and Isla was defying all odds.  Then 3 weeks before her birthday Isla became unwell and ended up in hospital.  I noticed that things seemed a little different this time and asked for physio to take a sample of her secretions.  It meant they had to do some very deep suctioning and it wasn't pleasant for Isla but what it did do is test positive for pseudomonas, which at the time was in the papers for new born babies losing there lives to it in a hospital in Belfast.  I  just couldn't believe it, I was in shock.  I remember the day the test came back, our consultant wasn't on this day another consultant came to us during the ward rounds with some student doctors.  I remember her saying to me what she had and that it was quite serious then she said "Do we treat it or would no treatment for Isla be a better option", that was it, I broke down, she looked at me and said I understand I am a mom to, but we need to think about what's best for Isla.  At his point I told her I had given up on Isla once before and we took her off all medication, gone to our hospice for end of life care and she still fought without any treatment and I wasn't going to do it again and if she needed treatment then she was to have it.  Needless to say I put in a complaint about this doctor, how dare she say I understand I'm a mom, sometimes in these situations you really can't catch your breath at what professionals have to say.   Then there are some who go out of their way to help and support you, which fortunately for us outweighed the ones who didn't!

Well after 2 weeks of IV antibiotics in hospital we were out and had a massive party to prepare for.  On 21st February 2012 Isla celebrated her first birthday!  What a day!  We were in the local paper with our news and we had the biggest party.  350 friends and family turned up, they included staff from the hospital as they also were surprised but delighted to be sharing this day with us.  We were given the use of a soft play centre with private hire, we had bouncy castles, face painters, photographers, ice cream vans all in this building to help us make this a day to remember.  We were so happy, we were going through this terrible situation but on this day we forgot all the bad times and focused on all the good, the people we had met, the way people had supported us, how strong we were as a family unit and our amazing little girl who against all odds was celebrating her first birthday.

When we had Isla's diagnosis we decided that every month we would have a celebration of her life, thinking that she wouldn't make this massive milestone.  So every month we would buy her presents, a cake for her sisters to blow out the candles and decorate the house full of Isla's favourite things... balloons! We know how lucky we were to see her first birthday and that day was the happiest of my life.

In April 2012 we managed another milestone Isla's first holiday to  the seaside.  Family came with us to support us as it was something we really wanted to do but needed some support incase Isla became unwell and we needed to get to a hospital quickly, we would need to have someone to look after her sisters.  It was a huge task all the equipment, arranging oxygen supply in the accommodation, informing the local hospital and nurses of our visit but with the help of the palliative care team we got there and had a lovely few days away.  Isla got to put her feet in the sand and listen to the waves on the beach.  We had to take Isla's sunglasses as she was so sensitive to light and would rarely open her eyes outdoors and would often get distressed by sunlight but those glasses did the trick!

Life had changed for us in so many ways and some not for the better.  We decided to move house and area as I found some situations difficult.  One day on the school run a pregnant mother came up to me and said, is it right you knew nothing about your daughters condition until after she was born, only its really worrying me.  Then a few months later she told me how relieved she was when her baby was born normal, after seeing mine! Some people should just say nothing! and sometimes you wish people would say something, like hello but more and more people detached themselves from us and the situation and some even crossed the road to avoid us.  We moved house, goodness knows how we did that with a terminally ill child but we did and it was the best thing we could have done, given the circumstances. Now if people wanted to know us, they would know our circumstances and accept us as a family, as for those people who didn't because of our circumstances changing by having Isla, then we felt we had kind of filtered out the people who maybe we needed to and maybe weren't real friends in the first place. Isla had taught us a lot in the space of a year, about relationships, feelings and the importance of never giving up how ever hard it got!  Isla loved her new bedroom we decorated it with butterfly wallpaper.  I remembered having a conversation with a lady from SOFT who's daughter had died at six months, she said she was like a beautiful butterfly that fluttered into their lives and couldn't stop for long.  How beautiful! I also referred to Isla as my beautiful butterfly. 

The move in august 2012 meant we were just down the road from the hospital, but Isla's health was improving and since her first birthday we had only had one other admission in the March it seemed she was getting stronger and she seemed to blossom!  In the October she started to lift herself up from lying on her tummy.  I would use photo cards to ask Isla where her sister were or her daddy.  One day I told one of the acorns hospice staff about Isla's new skill and showed her what she could do.  I asked Isla to find daddy and immediately she looked at her daddy photo, then I did the same with her sisters photo and she turned her head and looked to the other side of the room looking straight at their photo, needless to say the nurses jaw dropped open in disbelief! I will never forget her face that day.  I had a little star! She was showing an understanding which I never expected, as I was told on her diagnosis she would not grow, develop or thrive.  Well she certainly showed those consultants a thing or two! I remember one doctor bringing some students into her room on one of our many visits and he said meet Isla Groom she rewriting those Edwards Syndrome books.

Isla's second Christmas was approaching and there were so many colds going around at the girls school, I was so worried.  Then a week before Christmas Isla caught a cold and like all the other times before her breathing changed her SATS dropped and we called for an ambulance.  Christmas was just around the corner and it looked like we would be in over Christmas so we needed to have a plan.  We arranged for my mom and sister to move in at home whilst Brett and I did looking after Isla in hospital.  I am so very proud of Isla's big sisters not once did they ever moan about being sent to family or not having mommy and daddy about when Isla was ill in hospital.  Christmas day came my sister arrived at the hospital at 5am to look after Isla as I had never left her before, but I knew the girls needed us around when it came to Christmas morning opening their presents santa had just left them.  I knew Isla would sleep and not miss me.  We got a call from my sister to say the doctors had done their rounds and Isla was doing well and if we could manage it later she could come home for a few hours.  We were over the moon, we would be all together for Isla's second Christmas!

I got back to the hospital and managed to wean Isla down on her oxygen so we could get her home she was back in 2litres of oxygen as days before she had been on the hospitals maximum of 15ltrs.  It looked like things were looking up and she was getting better.  We brought her home Christmas day and had 5 hours of all being together.  Sian and Niamh helped Isla open her presents and Isla watched them smiling.  She was also quite sleepy I think it all got a bit too much for her.  All the time she was at home we had a monitor on her to keep an eye on those SATS.  The whole time she was at home those SATS never dropped all was good!  The time came to take her back to the hospital her sisters kissed her goodbye and that was the last time they ever saw her.  From the moment we took Isla back to the hospital and put her on the bed she started to deteriorate.  Her SATS dropped and she was back on 15 litres of oxygen, it was all so immediate.  For me it was like Isla gave everything she could to get home, that was Isla's last gift to us, Christmas day together! The next 3 days things got worse, the hospice was mentioned for end of life care but we decided against as we couldn't give up hope.  Physio's worked on her and they did their best to try and clear the secretions which seemed to cause her SATS to drop.  She was so very tired and weak.  On the night of the 28th Isla's SATS had dropped to under 80 and over the next few hours machines kept alarming and nurses kept coming in.  One of the nurses came to talk to us about how far we wanted to go with Isla's care.  We had agreed to go as far as CPAP if it would help we would try anything.  We knew when the time came that Isla would decide but if we could help her to get over the infection with CPAP then it was worth a try.  A doctor said they wanted to do a chest xray to see what was going on and why Isla's SATS were dropping so low.  After the chest Xray the consultant sat us down and said Isla seems to have a hole in her lung known as a pneumothorax she said she needed to drain the air from her chest.  We agreed and from that point of the needle going in Isla's SATS dropped to 40 Brett looked at me and we knew we were losing her, this time it was a fight that she simply couldn't win.  We were rushed up to the room for CPAP with Isla in Brett's arms they put the CPAP on her.  She was fighting to get it off.  We were losing her, we knew it, we sobbed held her and looked at her.  Brett said to me "she hates the CPAP look at her".  I looked into her eyes and she looked terrified that look |I saw will never leave me, I knew we had to take her off it, it was like she was telling us.  The nurses turned the SATS machine off as they said it wasn't good for us to be watching it and that Isla was dying and there was nothing they could do.  We knew this was the end of our journey with our little miracle Isla.  We asked that they make it as pain free as possible and one of the nurses suggested we take Isla into the sensory room, as she loved her lights and sensory toys really we knew it would be the perfect place for Isla to be.  Whilst in the sensory room the nurses took photos of us together and slowly took  her oxygen off her.  That was so hard to see but I knew keeping her on it would only prolong her suffering.  My dad died seven years to that day on 29th December and I knew that he had come for her.  I told Isla to go to grandad and that was it, she took her final breath, it was so peaceful.  That day Isla took part of me with her, our lives will never be the same again, this beautiful angel had touched our lives, we were blessed. 

The following days were full of tears and sadness.  Isla was in the special bedroom at the hospice and we moved in there to be with her right up to the funeral.  We were helped with all the funeral arrangements, even registering her death.  We were together as a family and the children were looked after by the staff as to be quite honest I was in a very dark place, I couldn't eat sleep or think.  I'm not sure what we would have done without the hospice and support it has given us.  A year on and still I have a support worker who visits me monthly and the girls attend a sibling group and get to be with other children who have shared the same experiences.  I gave up work to care for Isla and when she died I couldn't deal with going back as it felt like things were going back to how they were before she arrived.  So I started volunteering at the local Acorns Hospice charity shop to get my confidence back but mainly to feel like I was giving something back to the service who had helped us so much. It was a good move and in the September I got a job at a Special School.  Its hard and sometimes I find myself in situations where it all comes flooding back but I deal with it and who better to do this job than someone who has experienced first hand what it is like to have a very 'special' child.  I feel so lucky to be able to use my experience to look after children,  I guess that is the outcome to what life has dealt me.  I have become a parent ambassador for the Hospice and for this role I'm currently doing some training with neonatal services, talking about my experiences and the importance of early referral to the hospice.  If I can just convince one professional of early referral by telling my story then its a job well done, a family can receive the support much needed in a situation like ours and Isla's memory will still live on!   

I guess I learnt from this that no matter how bleak a picture they painted in the early days that sometimes there is hope, I know that not everybody is as fortunate as us and I thank god for the time we had with Isla and yes lessons were learnt and our life has changed forever, Isla has touched so many people and brought out the good in people by raising awareness of our local hospice and support services.  The amount of people we know who now fund raise in our daughters memory makes us so proud.  We are thankful for our time with Isla and feel truly blessed to of had her in our lives.  She was brave, strong, a true fighter, inspirational and our angel.  We have a saying written on our walls at home. "Don't cry because its over, smile because it happened!" and talking from experience it is very true!

As hard as it has been to put together it is written in hope that it will support other families and give them some hope.  Lots of people tell me that these special babies only come to special people. We are blessed.  As hard as it is, embrace it and make every moment count, have no regrets and let them take you on this journey which will teach you a lot about life, faith, hope, strength and most importantly love!

God bless Isla Smiler, mummy loves you very much!

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