Ava-Marie

The day I was told it was highly unlikely I’d be able to have more children due to low fertility, I was devastated, but at the same time I was grateful to already have my son Luke who was growing into a lovely young man.

My periods had always been pretty regular (sometimes too regular!!), so in April 2017, when I was a week late, I instantly knew I was pregnant.  Two tests later pretty much confirmed it.  I was delighted even though a little scared.  I would be 42 when this little one appeared!!  Luke had always wanted a sibling and his face when we told him was priceless.  His first words were “So when did you ‘do’ it??”  Our scan confirmed a due date of 25th December (Christmas Day!!!)

Up to my 30-week scan, everything was running smoothly.  No sickness, scans were all good (well when baby would keep still), all very much like my pregnancy with Luke.  Luke wanted to know if he was having a brother or sister (he wanted a blue!!) so at our 20-week scan, we let him join us to find out.  He looked a little disappointed when the Sonographer announced it was a ‘pink’ but I think he was just made up that after all this time, he wouldn’t be an only child!!

Because of my age, the consultant wanted me to have more regular scans.  At my 30-week scan, the sonographer had noticed that our baby hadn’t grown much since the last scan and there was high blood flow through the cord to the placenta and because of that, they wanted me to lay for an hour upstairs on the ward while the baby’s heart and movement was monitored.  Although everything was fine at that point, the consultant did warn me that they wanted me to go for more regular scans and monitoring and if anything was to drastically change, we may have to deliver from around 34 weeks….but that was worst case scenario.  I needed to rest up and take things easy.

Work agreed to let me work from home and I vividly remember on various days a magpie landing on the living room window sill and tapping on the window.  I instantly got a sinking feeling in my stomach but just had to keep telling myself not to be so daft and superstitious!!

Over the next 5 weeks, I was having scans and monitoring twice a week and looking more likely that our baby would be born early.  I was given steroid injections to help with undeveloped lungs and on Friday 17th November (Ironically World Prematurity Day) I was told by the consultant that baby needed to be delivered.  Unfortunately, there were no free cots in Neonatal that night so they scheduled me in for a c-section the day after.  I was panicked and prayed that my baby girl would be ok.

I was informed that I would be first in theatre so didn’t sleep a wink that night.  Neil arrived and we were psyching ourselves up when a nurse came in and told us there would be a delay until the afternoon due to an emergency c-section that needed to be done.  All I kept thinking was I am ever going to meet my beautiful girl alive!!

So, at around 12.30pm I walked down to the theatre into what seemed like a small room and sat on a bed with my legs over the edge while the anaesthetist did his bit.  I have to say, the staff in there were fabulous, kept me talking and as upbeat as possible.  They were putting the screen up when I saw that Neil wasn’t there yet and started panicking that they would start before he got there, but he walked in a few seconds later.

I remember all the pulling and pushing of my insides very clearly!...and there was lots of chatting going on around the theatre. 

At 13.25 they informed us that Ava-Marie had been born, but I couldn’t hear any crying and started to cry myself.  There was such relief when eventually we heard her little voice and the nurse brought her over so I could have a look and kiss her forehead.  She was born weighing 3lb 1oz….our own living doll…and a little ginger ninja ♥

The next few hours seemed to go by in a bit of a blur.  I just remember family coming up and being allowed to see Ava-Marie but because I was still in recovery, I had to remain where I was.  I still couldn’t feel my bottom half anyway!!  I think I rambled a bit, cried a bit and vomited a few times!

I can’t even remember what time it was when I got back to the ward.  I just remember at 9pm, a nurse coming in and making me walk…..when I finally managed to get myself off the bed, I felt like my stomach was going to burst open!!  Once I’d had a wash and freshened up a bit, the nurse took me to the Neonatal ward where I finally got to see my baby doll and a little later that night got to have skin to skin contact with her, I was soooo happy!!

The next few days whilst I was still in hospital consisted of sleeping and visiting my little cherub in the neonatal.  My milk wasn’t coming through and because Ava-Marie was so tiny, they decided to feed her via a tube placed down her throat.

Whilst she was in neonatal, they were constantly taking blood from her and had her on oxygen, it was horrible to see all this happening to my baby girl but the snuggles with her made it all worth it.

One of the consultants had mentioned the possibility of her having a ‘syndrome’.  We knew people with Down’s and others and made it known we’d be there for her all the way.  They went ahead and did some genetic testing and we waited what seemed a lifetime for the results.

On 7th December 2017 we were given the devastating news that our gorgeous little miracle had a life limiting condition known as Edwards Syndrome (Trisomy 18) and wouldn’t be expected to see the week out.  They gave us some information that they had downloaded from medical sites and Neil and myself just cried as we read it.  The worst part of it all was having to tell Luke that his baby sister wasn’t likely to live past a week or so.  He broke his heart.

Once we had started to digest the information, we decided that we needed to get Ava-Marie baptised as we didn’t know how long we had.  Neil contacted his long-time friend and Vicar Ian Greenwood and asked if he would come to the hospital to baptise her.  Ian said he would be honoured to.  Ava-Marie was baptised in the hospital on 11th December 2017 surrounded by her family.  It was such an emotional but lovely service.

Over the next few weeks Ava-Marie had a couple of visits to Alder Hey for heart scans.  She had an ASD and a large VSD.  We asked about the possibility of them operating in the future but they advised that as she had T18, they would not operate.  It always seemed like bad news after bad news but we were a few weeks on and she was still alive and very much kicking!  Two lovely ladies from Derian House visited us regularly to talk about how they can help and also to prepare us regarding end of life care.

Both myself and Neil were becoming shattered as we were up at the hospital all day, home for tea, then back at night.  We had started to do a lot of the caring for Ava-Marie, feeding, bathing etc, so we felt like we had to be there but it was making us both ill.  We decided to start doing shifts (Neil was on paternity leave followed by sick leave on advice from his work), one of us would do the morning shift, the other would do the afternoon, then we would both go in the evening.  It was still tiring, but it worked better for us.

After we had started to tell people our news, it came to light that a relation of my best friends’ husband had the exact same condition and she was 3 years old.  Her mum Lyndsey contacted me through Facebook and she was absolutely amazing.  She added us to a UK support group and we couldn’t believe the sheer number of children, just in the UK alone, that had this condition.  We found the advice helpful and other stories comforting, but also there was sad news of those whose little ones had passed away.  All these stories we were hearing though gave us the tiniest glimmer of hope.

The weeks leading up to Christmas, Ava-Marie was doing good, she was on nasal oxygen and looked really well.  She was gaining good weights too (I used to look so forward to weigh day).  We used to take her to one of the overnight rooms in her cot and lie with her on the bed or watch some TV.  It felt nice to do some normal things. 

Whilst all this was going on, we tried to keep things as normal for Luke as possible.  He still went to rugby training and Scouts and we’d take him to the cinema.  I was worried he could have gone off the rails having to cope with what he has but he has been amazing throughout….and still is!

There had been talks of getting Ava-Marie home for Christmas but these were dashed when on Christmas day, she had to be put back on CPAP as she was struggling with her sats levels, working really hard at breathing.  Again, we were devastated and just kept asking the same question ‘Why us?’  Family came up to the hospital throughout the day and we even played some board games to try and normalise things for Luke.  Our Luke has always loved Christmas….playing with his presents, being with family, doing quizzes……this had to be the worst Christmas and new year ever…..apart from knowing that our little shining star was still with us.

Over the next few weeks we were given a date to aim for to get her home.  We were given the CPR dvd to watch and spoke to a dietician about all the feeding equipment that needed to be ordered.  The oxygen tanks were ordered.  We were finally preparing to take our little girl home.  She was gradually weaned off CPAP onto nasal cannula and seemed to be doing well….until the day before she was due to be discharged! She fell poorly again and had to be put on CPAP.  It was so hard leaving her in that hospital!  That week in hospital, she was quite unsettled.  I had mentioned a few times to staff that I thought she had reflux as she seemed in discomfort and was being sick after feeds.  No reflux medication was given in hospital.

We took her home for a couple of hours on 30th January 2018.  It was so nerve wracking but lovely to spend time with her in our own environment….even if she did sleep all the time she was there!!!  While Luke was at school, we took her up to his room and placed her on his bed surrounded by his wrestling figures and took a photo.  Luke’s face when he came home was priceless.

We were finally allowed to take her home on Monday 12th February 2018, we were so excited…..and nervous!

The first night when we tried to put her down in her Moses basket, she started crying but looked to be in discomfort.  I had no sleep at all that night as Ava-Marie was awake nearly all night and just wanted to be held upright.  When we tried to feed her through the tube whilst she was lying down, she would scream out in pain.

On the Tuesday we had to take her to Alder Hey for another heart scan.  They confirmed that the holes hadn’t gone any smaller.  We mentioned to the consultant about Ava-Marie possibly having reflux and he prescribed Ranitidine immediately.  Once we had got her home and given her a couple of doses, it had seemed to help a bit, though she still couldn’t take her feeds lying down.

On the Wednesday, Ava-Marie had an appointment at Ormskirk Hospital for injections.  We saw the consultant that had been over her on her time in Neonatal, Dr Marrigoodi. He was saying how well she looked.  She was really good all through the appointment and didn’t cry much at all.  That evening we could still only feed her whilst upright, but she was a little calmer than she had been.

Feeds had continued, with medication throughout the night and at her 9am feed, she had started to take it ok whilst being laid down.  The feed seemed to slow down so whilst Neil was hold of the feeding tube, I picked Ava-Marie up out of the cot.  In an instant I just felt her go limp and she went really pale.  All I remember was trying to rouse her and the next thing, I had lay her down on the rug and was checking airways and for a pulse, while Neil was on the phone to the ambulance service.  I had to attempt to  perform CPR straight away, something I have never done before, apart from on resus Annie when I did a First Aid course years ago.  She started to be sick so I lay her on her side.  In no time, the ambulance men arrived and we were quickly whisked into the ambulance and off to the hospital.  For every second of that journey, those two fantastic ambulance men worked on her tirelessly.

We were taken straight into A&E where all the Drs and Nurses quickly went into action.  Dr Marriguddi was there and asked me if I wanted her to be intubated, but Neil hadn’t yet arrived and I didn’t want to make a decision like that on my own.  He arrived shortly afterwards and we agreed that Ava-Marie had been through enough in her short little life and didn’t want them to be pushing tubes down her throat….we didn’t want her in any more pain.

She passed away in front of us and it was the hardest thing we have ever had to go through.  They swaddled her little body and passed her to us so we could have our final cuddles.

Things seem to be a blur after that but I remember being taken to a side room and before long Jean and Claire from Derian House had arrived and had arranged that we could take Ava-Marie there so she could be looked after before the funeral.

The staff at Derian House were amazing. Jean or Claire would sit with us when we went up to see Ava-Marie and chat with us.  The night staff did some canvas handprints and made some beautiful keyrings using Ava-Marie’s finger prints.

We went up to Derian House to see Ava-Marie almost every day.  We would just sit talking to her in her cold cot.

We had the daunting issue of registering her death and arranging the funeral.  I never thought in a million years I would be planning my child’s funeral, it’s just so wrong!

We were informed of small funeral directors in Ormskirk called Hunters.  As soon as I spoke to the lady on the phone, I knew Ava-Marie would get the best send off.  Pat was a lovely lady, the perfect woman for the job she did.  She was so comforting and knew exactly how to deal with us.  She cried with us, laughed with us, she was like our own guardian angel.  She certainly went above and beyond when organising our little girls’ funeral.

Again, the day of the funeral was a bit of a blur, I couldn’t believe we were actually about to lay our daughter to rest.

The crematorium was full.  We were surprised but comforted to see so many familiar faces.  We had asked people to wear colours as we wanted this to be a celebration of Ava-Marie’s short life.

Weeks following the funeral, i became obsessed with keeping busy and felt like I always needed to be doing something to occupy my mind.  Two months after the funeral, I decided to go back to work.  I felt like I was coping fine until one Sunday in May.  We had been invited to a Forget-me-Not service at Derian House, where they remember all those children taken too soon.  Unfortunately, we couldn’t attend as our son had a rugby match, and we always committed to keeping things as normal as possible for him.  After his game, I came home and saw the invitation staring back at me and I just completely broke down and my anxiety was at an all-time high.

On the Monday, I contacted Derian House’s Counselling team.  I felt like I really needed the help as I couldn’t control how I was feeling.  I was diagnosed with anxiety and depression and ended up off work for 3 months.

The counselling helped immensely.  I dread to think where I would be now had I not been able to take advantage of Derian House’s services.  Mine and Neils parents still attend a grandparents group at Derian House which is a form of group counselling and I has really helped with them coming to terms with everything.

Sometimes I sit and think ‘did all this really happen?’, ‘have I imagined the whole thing?’ It sometimes feels so surreal.  Fortunately, we have many photos and videos to look back on and I speak to or about her every day.  I will always try to keep her memory alive.