As we left Cornwall last week Naths Mum handed me a bag with this beautiful hand stitched blanket. I LOVE IT!!!! If you wonder why the crazy colours? its what I chose 🙂 (I know I have taste haha) I love bright colours and from finding out we were expecting I mentioned how i’d love an orange and turquoise blanket for the baby
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I absolutely love it, its so cool – not just because its what I had hoped for but for what it represents. Made from the love of a grandmother for her to be wrapped in love for the days she is here and then for it to be a comfort to us when she is called back!
Another Blanket of love is the one that my own mother is knitting; its white and will be used to wrap her in when she is laid to rest. Both specially and specifically made by Poppy’s grandma’s that she can be wrapped in love in life and death. I know both have found them emotional to make but what it means to us all has helped them continue…

The last few weeks we have been wrapped by others in blankets of love through notes, treats, prayer, packages – the list goes on. Each one brings us strength to keep going and hope for great things. We are very blessed to have people all over the world hoping with us and spreading this love over our family.

I am learning so much about hope from this journey and I have seen it manifest itself differently throughout the family and our friends. Obviously hope can be quite superficial as with a blanket colour choice or maybe whats for dinner, but im talking about reall , deep hope from the heart that you truly have confidence that the efforts of everyone will be for a purpose and joy will come to us all, even if for a short while.
There have been the occasional days I have felt helpless and as a result hopeless too. Everything around me at times seemed so bleak and that there really wasn’t a lot to hope for – things are what they are and cannot be changed. But one thing I have learnt about hope is that yes you see things as they are but from a quote by Joyce Meyer you can also: “Be confident that something better is coming”.

Yesterday Nathan and I read over all of the notes again from Poppys scans and suddenly we saw some light. After speaking with other parents that have already gone through this with children with trisomy 18 and the same heart defect and yet who had had their children live several weeks I had wondered if there were any chance we could have our daughter for a few weeks instead of hrs or days as Drs have told us – I prayed SOOOO hard for this to be the case. What we found has made me believe that we might just have that blessing. The one major thing preventing it was that her heart is known to be “duct dependent” and without surgery or drugs this would close within a few days and she would pass away. I spoke to a cardiac nurse today at LGI and she confirmed what we hope
–  we remembered that from 20-28weeks the narrowing of the Aorta had begin to self correct and blood was flowing through, if this continues and is open sufficiently that when the duct closes blood can still flow the yes she would live longer! Yes her life would still be limited and heart poorly but she would be able to live for a while longer. HOW EXCITING!
I also have a genetics appointment, a trisomy 18 baby at 37 weeks with a strong heartbeat, another scan this week and well a lot to be grateful for and a lot to be hopeful about.

I have felt a lot of peace through prayer the last few weeks that what will happen is in God’s hands and that it will all be okay. I know things will reach a point of unbearable pain but we as a family have been given strength as I say from the actions of others with their blankets of love! Please continue to reach out to others you see suffering, you wrap them up for a little while and bring hope and comfort on dark days. Its because of others in our lives; family, friends and strangers that I can be happy and have a smile on my face at one of the hardest points of life! THANK YOU

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I don’t know whether it’s his age or what but recently Ethan just NEVER seems to be content with things and its driving me NUTS! Get him his red tshirt out, he wanted to wear the blue one. Get him a chocolate ice cream and he wanted strawberry. He wants the car that someone else has or the book that Megan is reading, he didn’t want to go in our car, he wanted to go in Grandma’s car, he didn’t want that seat he wanted the other one…i’m sure you get the idea! The most annoying thing is its said in an annoying whine and usually what I have given him is the one HE chose but then he never seems satisfied with that choice. Like I said ITS.DOING.MY.HEAD.IN!!!!

With going through this with him over the last few weeks and trying my best to remain calm and teach him to be happy (content) with what he has and stop always wanting more/something else, I cant help but analyse how content I am with my own life and choices. With this whole journey with Poppy I have seen the times when I worry the most about the future are the times when I am not 100% content or satisfied with what it is that is happening or what we are choosing. Right now though I can honestly say I feel peace and contentment with our plans and with our trust in God and that is a good feeling.

Today I sat overlooking the harbour of ‘Padstow’ – a small seaside town in Cornwall.
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We came here (to Cornwall) on Saturday for a family holiday with almost all of Nathans fam, our attendance at which has been very up in the air since Poppy’s diagnosis; would I be induced this week? would it be a good idea to travel that far being so far along ? what if I go into labour? Can we handle the stress of travelling that far with 2 young kids with all we are dealing with? etc etc Well the kids were FAB at travelling down and we made it in excellent time (thanks to my speedy driving on the last stretch) and at the end of the day you cannot drift between choices – Do what feels right and be happy with it. If not learn from it! So we decided why not… Yes I may go into labour BUT were in the UK and the hospitals will be pretty much the same, OR I might not and we would have missed out on a much needed break and lots of family fun. We are VERY glad we chose to come, were only a couple of days in but its been FANTASTIC and we have had so many laughs. The Kids LOVE seeing so much of their cousins and having adventures. What a beautiful place to be in and how content we are with our decision! And if Poppy wants to come join us (that’s not an invitation by the way) we will have no regrets, we are living in the moment right now and enjoying it all together. Everyone needs fun and adventure, everyone needs a laugh and everyone just needs to be content with life and the blessings we have rather than wishing for more, something different or wondering “what if”!

Here is the look of contentment in Cornwall:
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Last week the hospital referred us to “Forget me not” children’s Hospice and tonight we reluctantly (all) went for a visit. Ethan and Megan chose their own outfits and graced them with their presence –
Megs rocking a witches dress and crocs, Ethan – shorts, tshirt and wellies 
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We were pleasantly surprised and found it a very peaceful place. Everyone we met there were so nice, friendly and welcoming and the kids had fun playing whilst we chatted and took a tour. The facilities are absolutely fantastic and the things they do for families are second to none. The whole experience was emotional and at times I had to take a VERY deep breath to prevent the flood gates opening!!

They do care direct from hospital and also after death too (be it before, at or after birth).. I felt quite emotional as I stood in a nursery designed to lay to rest your baby until you are ready to send them to the funeral home/for burial etc. I stared at the crib and wondered if this is where I would want Poppy to be? I then turned and asked her what death was like for a baby and how it felt to be around them once they had passed. Here I am at 35 weeks pregnant, almost ready to birth my second daughter and there I am in a chilled nursery planning her passing – The whole visit was quite surreal and has left us with a lot to think about;

  • Is this where we want to go?
  • Do we want to go soon after birth? – if so their Dr/Nurse will come to the LGI and take her for us to all go together
  • Will we just access some of their services? A day visit.. an overnight visit etc
  • Do we want them to come to our home to provide support?
  • Do we want to stay with her there once she passes? As I said they have a “Snowflake suite” , a flat designed for families to stay and visit to view the infant or child/spend time with them after death. The nursery is kept cold for obvious reasons and hence its name. If she is still born this again is an option they have offered.

Its really so much to think about, they are wonderful and offer amazing services for families like us but we need a plan and are running out of time. I like the idea of going before with the kids and making memory boxes etc, I like that their facilities make the most of the time you have as a family with your child. Everything else is so foreign I dont know how I feel and we dont know what we want to do. Its a situation in life where you literally have zero experience to draw from and are making decisions on a situation you have no idea the outcome.
One thing that troubles me the most is that this path means comfort care! What troubles me more is that it soon became apparent that the hospitals referral means that they can refer our care to someone else ASAP and that its therefore unlikely that Poppy will get the healthcare we have been seeking… If we want her home / hospice route we sacrifice the fight for feeding/breathing assistance and just have to hope for the best. If we stay in hospital, who even knows now if they will give her these things. Everyone seems to like the phrase “prolonging the inevitable”… we see it as “written off”!!!

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Family, cake, laughs and “I do”! Today could not have been spent in a more joyful way than seeing Naths sister ‘tie the knot’! They are a beautiful couple inside and out and the day was wonderful. I loved being around family, especially catching up with those that don’t live so close. I loved eating too much cake and I loved seeing the joy on Ethans face at everything…especially running wild with his cousins! Both Ethan and Megan commented on how Auntie Lucy looked like a princess and it was so lovely to hear.

Megan unfortunately did not go to bed on time last night and so spent half the wedding whining, a small portion eating and the rest sleeping…i’m not complaining though, a sleeping child and playing child meant for an enjoyable, laugh out loud reception – Just what we needed

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Amid all the beauty and happiness though I also experienced things I had not anticipated I would today;

1. ANXIETY  –
I LOVE doing hair – it comes so naturally to me and I would say i’m usually pretty good at it! I was excited to do Lucy’s wedding hair, something quite simple but effective…as I worked on it I felt so anxious and just generally blank. I spent lots of time faffing and just staring, not quite remembering how to do simple things! As a result I panicked more and got flustered…this is NOT me when I do hair, I’m usually pretty chilled and take it in my stride. This experience knocked me back a bit and It really made me see how this is affecting me and my ability to focus on usually simple tasks. Nathan was even surprised when I told him how I had been!

2. SADNESS
Family gatherings are bitter-sweet, whilst they are joyful and today certainly was, we both cannot help but be reminded that for us the next gathering could be for the funeral of our baby- Blunt yes but i’m afraid that’s our reality! I loved chatting with family and of course poppy came up, although hard at times to talk about, I wouldn’t want to ignore the fact shes coming and wont be here long. Yes its sad and I often sense the sadness others feel too, but oh how im glad we can talk together about it. Like I said “bitter-sweet” and I much prefer to talk about it, about plans, about her condition, about how we are coping than to pretend this is not happening and this pregnancy is normal, because that would certainly do my head in!

3.  GRATITUDE
Not just a little, but Extreme gratitude for being blessed with a wonderful husband myself. We chatted a lot about how almost 5 years ago when we got married that we could never have imagined that we would be in this situation, but how we are glad for each other by our side and the love we have for each other. My heart was full of gratitude that Nath is with me and a strength to me at this time.

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Another roller coaster day, but grateful for more ups than downs!

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