Happy New Year! I thought I would update anybody that might be interested to know the progress of our family. I am sorry it has taken a while to write this but it always seems to feel like the right time when I do and I suppose that right time seems to be now!
Since my last post we have had a wonderful service of Love for Faith and Constance has COME HOME!!!
I wanted to start with Faith because she is very present in my thoughts today and since Constance has come home I have had less time for her. So here we go, a little ode to our darling babe.
Our family and the girls’ Godparents came together for Faith’s service of Love where she was cremated at Kensal Green Cemetery on a rather wet and misty day. However in direct opposition to pathetic fallacy, it was joyful and wonderful. A very short service was sensitively conducted by the brilliant Reverend Adam Ford whom I mentioned in a previous post. Fred read The Lake Isle of Innisfree, a poem one of my dear friends and Godmother to our girls, Julianna read to me yonks ago – (she also designed a butterfly for the front of the service booklet to represent Faith….more on butterflies later)! I add the poem because in writing out the words I can hear Fred saying them on that day in the Chapel and I never want to lose that:
The Lake Isle of Innisfree
W.B. Yeats, 1865-1939
I will arise and go now, and go to Innisfree,
And a small cabin build there, of clay and wattles made:
Nine bean -rows will I have there, a hive for the honey-bee;
And live alone in the bee-loud glade.
And I shall have some peace there, for peace comes dropping slow,
Dropping from the veils of the morning to where the cricket sings;
There midnight’s all a glimmer, and noon a purple glow,
And evening full of the linnet’s wings.
I will arise and go now, for always night and day
I hear lake water lapping with low sounds by the shore;
While I stand on the roadway, or on the pavements grey,
I hear it in the deep heart’s core.
I then read the lovely Hafiz poem I wrote out in a previous post. After blessing Faith, Fred, (Constance) and I laid 3 roses on her – one from each of us and then we all went back to our house for pain au chocolat galore, the most delicious chocolate biscuit cake made by another gorgeous godmother Annie, a shot of sloe gin and humungus hugs from such special people in our lives including our dog, June who is now a loyal and devoted sister to Constance.
I hope one day Constance will approve of her twin’s send off- we thought it just perfect!
True to form from the pregnancy, Faith seemed to keep sending her strength and love to Constance who really began to excel herself in NICU at Queen Charlotte’s, so much so that her work there was done and she was transferred to St Mary’s Paddington to prepare for home. We had to leave in a bit of a flurry as Constance’s cot space was required for a baby more in need but our appreciation and love for the gold star team at Charlotte’s knows no bounds and we miss them all every day! It is common for babies to be transferred once they are stable, sometimes to hospitals more local to parents or to a hospital whose care level is lower in order that Queen Charlotte’s can accept more premature or critically ill babies to work their magic on. After some weepy goodbyes, a whole lotta love and cuddles from and to Constance and myself we whizzed off in an ambulance to St Mary’s Paddington for the final chapter of our hospital journey. Constance, as per, took the journey and new digs in her stride. I was lucky enough to be able to live with her in St Mary’s for the week that followed. Initially I stayed in a room along the corridor from ITU and just pottered to and fro. I was still finding it incredibly hard to sleep away from her and was told off by a wonderful midwife, named Kate who forced a cup of tea down me at about 3am each night and insisted I stay in my room for at least 2 hours in a row to try and get some sleep. I probably looked an absolute loony walking the corridors in my nighty but I just found the separation anxiety too great!
Over the course of the week I was trained up in order to go home with the nasal-gastro feeding tube still in place. This is a new concept for the Imperial Healthcare trust (comprising Queen Charlotte’s, Hammersmith and St Mary’s Paddington Hospitals) and I am proud to say we are the first family to have been sent home in this way. This, however, has nothing to do with us and everything to do with the patient and devoted teaching and assistance of the integrated family developed care team who went above and beyond for us and were also prepared to take a bit of a gamble which thankfully paid off.
After 6 weeks in Queen Charlotte’s and a week in St Mary’s Paddington, CONSTANCE CAME HOME. Phewf – tears still fill my eyes as I write that!
The coming home part was almost the most difficult exercise of the whole ordeal. As little Constance was allowed to come home still so very wee at roughly 3 pounds or 1.4kg she didn’t fit in any car seat/booster combo – we made do with a borrowed car seat heavily adapted in the hospital for the short journey home. When we arrived home, we asked a passer by for the obligatory photograph of Fred, me and Constance in the car-seat standing on our front doorstep. They must have thought we were completely barking. When we looked at the piccy afterwards we realised you couldn’t see Constance in the car seat at all! The poor little nipper was squished right down to the bottom! The rather confused passer by obviously thought we had some weird obsession with car seats and we’ve got an inane picture of Fred and I proudly showing off said fairly average car seat without so much as a glimpse of our star girl!!!
She pulled out her feeding tube on our first night home – a slightly panicky moment but we decided to fight on through and just keep calm and keep offering my breast which she had been making a very good effort at feeding from whilst still n hospital. After a few touch and go weeks of not much weight increase and fear of the tube having to be replaced, our girly pulled through and started piling the ounces back on. She now is a fully breast fed babe, feeding every 2-3 hours and further developing her lung capacity with every screech if I’m not ready in time! As I write, Constance is 3 months old. She weighs 5 pounds and has positively chubby cheeks, long may this continue!
Nothing can describe the feeling of having our baby at home. We spend most of our time staring at her which she probably thinks is a little intense and otherwise gently finding our new normal. Introducing her to family and close friends was a hugely special moment as is carefully venturing outside with her now for the odd breath of fresh air. We remain cautious with her as has been advised by the doctors until cold and flu season is over in March but at this stage we feel so incredibly lucky to have got here. For all the other inmates of Constance still fighting away in hospital with their devoted families, we salute you and send you so much strength.
I mentioned earlier about a butterfly designed by the girls’ Godmother Julianna for Faith. Back in the Summer when things started to get tricky for us in the pregnancy, we made a pilgrimage to Richmond Park on a weekly basis to find time to breathe, think, make decisions, be. We always went to this small pond in the middle of the park where our dog June could swim and I could rest on a bench. On this bench happened to be an engraved butterfly – initially I just admired it as something beautiful and random but when we realised Faith’s predicament all the bereavement material to read had an image of a butterfly on it – on further investigation it turned out that the purple butterfly is the symbol of baby loss. Faith is a butterfly in my eyes – just like the butterfly, she’s free.
I cannot wait to take chubby cheeks to our pond in Richmond Park, to watch June play in the water and to sit on the bench with Faith and Fred. 2019 is going to be a good year.
Thank you so much to everyone for all you have done to support us, hear us and guide us. We owe so much to so many. If anybody ever would like to talk to me about baby loss please email me – firstname.lastname@example.org. I would love to be there for you.
With So much love