| Location | London |
| Age | 21 days |
| Cause of Death | Brain Haemorrage |
| Date of Birth | 07/07/2008 |
| Date of Death | 28/07/2008 |
| Visitors | 1,460 since 20/01/2009 |
| Creator |
January - June, 2008
To start with I was quite nervous when I discovered I was pregnant. Then to find out it was twins
was amazing. It took a while for the news to sink in but in the end I couldn't wait to meet you
both. Everyday I was sick for months and months and all I did was complain. Then, I went to the
hospital to see if you were boys or girls, and I found that you were both girls. I was so happy I
rang everyone I knew and then went round to your great nannys house and told her and we had a little
party. At the scan the doctor had said that you were almost the same size so I was happy and care
free. In the next few weeks my feet started swelling up and my tummy ballooned but I just thought it
was because you were both going to be little fattys so I wasn't worried. Two weeks later I started
getting really painful contractions but I just thought they were braxton hicks because I was only 22
weeks and I couldn't be in labour! I decided to go to the doctors though just to make sure
everything was ok and the doctor did a scan and I found out that my precious girls had got stage 2
ttts. This scared me very much because I was so out of my depth with you both. I was told all the
measurements of my little girls. Baby A was the first number and then Baby B was the second number:
Bipariteal diameter: 59.5 mm 51.9 mm
Occipitofrontal diameter: 56.2 53.9
Head circumference: 197.6 190.8
Abdominal circumference: 187.1 151.3
Femur length: 35.0 34.0
Head circumference to femur length: 5.6 5.7
Head circumference to abdominal circumference: 1.05 1.26
Amniotic fluid: 83.0 21.0
I will never forget those last 2 numbers. They echoed in my head for a while. Then I was told my
treatment options and I was sent home to think about what i wanted to do. When I got home I decided
to google TTTS and what I read scared me even more. I finally decided what I wanted to do but then
the contractions came back so I went straight to the hospital and found out I was in preterm labour!
So I had to go on mag sulfate for 48 hours and this made me very very sick and dizzy and I didn't
like it much but I did it for my little girls.
I spoke to the consultant while I was in hospital about having the laser surgery and he gave me an
appointment to assess your condition, have a colour flow doppler and see if I met the criteria for
the laser treatment. At my scan I found out that Baby A still had 87mm and Baby B now had 19mm which
made us at Stage 3. Baby B weighed around 450g and Baby A weighed around 625g so you had a 38%
discordance. I found out aswell that Blair had a velamentous cord insertion which made her have
intermittent absent diastolic flow. I was told that for laser surgery I would have to go to London
or Birmingham but that my babies weren't doing that good so I was given an amnioreduction and
referred to Queen Charlotte’s and Chelsea hospital in London for treatment. The amnioreduction
hurt a bit and they drained off 1.4 liters of fluid from around Baby Beau! Then at the next scan I
was told that the amnioreduction had helped a bit and that Beau’s heart was doing much better and
Blair had grown a bit. I also found out that both my precious little girls had VSD's (holes in their
hearts). At my next scan I was told that Baby A's fluid was back up in the 90's but Baby B's were
not as low as they were before so both of the twins were doing ok.
The next day I went for my next amnioreduction which went terribly because the doctor accidentally
did a septostomy which meant that I couldn’t have laser surgery. This made me really mad, and it
still does because now I will always wonder how having laser surgery could have helped. Then on June
26th I went down to London.
June - July, 2008
When I got to London the doctor did a scan and told me that the membrane had detatched from the wall
of the placenta and was wrapped around Blair (the donor baby) and that there was hardly any fluid
between her and the membrane. I had scans every 12 hours to keep an eye on you both. The doctor
decided that if the fluid got any lower then he'd deliver you both. He was concerned with fluid
around Blair’s lungs and tricuspid regurgitation as well. I was so scared while I was in pregnant
in London because I was all on my own and very scared about what would happen to my little girls.
Beau (recipient baby) was doing a bit better but was in early stages of heart failure and had fluid
around her abdomen and heart (called hydrops). But the doctor tried to reassure me by telling me
that Beau’s dopplers were much better. Beau was around 2lb 4oz and Blair was about 1lb 8oz at this
point. These were really good weights for 25 weeks. Then, I discovered I had a grade 2 placental
abruption, I was lying in bed and suddenly felt a pop and there was a gush of blood but the Dr said
it was only a partial abruption which was supposed to stop me worrying a bit. I had one big long
contraction and was put on complete bedrest and wasn’t even allowed to get up for a wee like I was
before when while I was on bedrest up until then.
I was then put on terbutaline instead of mag sulfate because mag sulfate made me so sick and I was
put on a million other drugs to help my babies get better. The babies were showing some signs of
distress and I went into shock because I was really weak and faint. Then my abruption worsened so
the Dr scheduled a csection for me because it was too risky for my twins to stay in there. Beau
Nicole was born 7.23am 2lb 2oz & Blair Niamh was born 7.25am 1lb 7.5oz on July 7th 2008 by
csection.
7 - 28 July, 2008
After my babies were born I had a grade 3 (a complete) abruption and hemorraged so I lost a lot of
blood and I was unconcious. I had quite a few blood transfusions and platelet transfusions and
because of the loss of blood and went into hypovolemic shock. The twins were doing ok though. The
babies were put in the same incubator for a while but then Beau started going a bit blue and not
responding to some of the meds so they did an echo of her heart and things to check it out and they
were put in seperate incubators. Then Blair’s oxygen sats dropped when she was moved away from
Beau because you both loved each other very much and weren’t used to being away from each other.
Both babies were put on IV's and ventilators. I was kept unconsious because I was very poorly. On
12th July I got puerperal fever. Blair was put on CPAP on 14th July she was doing so well but Beau
lost a lot of weight and went down to 1lb 4oz and the Drs found a problem with her kidneys as well
as her poorly little heart. On 15th July I got ever worse and had a seizure and the hypovolemic
shock made me go into prerenal acute renal failure. I also had a fever of just over 40oC and the Drs
were worried that I was getting hyperpyrexia. On the 18th July my temperature went down and the Drs
moved me out of ICU. Blair put on more weight too so she was up to 1lb 7oz.
Beau wasn't so good though she went downhill in the night and had a bleed on her brain and her heart
was still giving her problems. On the 21st July Blair was doing really good she was up to 1lb 11oz
and the Dr decided to put put her on oxygen, just the nose tube but they thought she'd probably be
able to breathe on her own pretty quickly. Beau was doing a bit better aswell she had something in
her head to drain the bleed and put on weight so she was up to 1lb 7oz but was still on the
ventilator. On 25th July Beau had had another brain bleed (grade 4 IVH) and her heart was really
weak and the Dr said that she probably wouldnt get through the night. Beau got through the night
though thank god and Saturday night everyone was praying that she held on till I woke up so that I
could meet her. Well, on Sunday morning I woke up! When I woke up I felt terrible because I had been
asleep for 3 whole weeks while my beautiful girls were fighting for their lives in the NICU. I was
taken straight down to see my babies. I was struggling to stay upright the whole time because I was
so shocked. Baby Beaus heart stopped beating a few times while I was there which obviously scared me
even more! By this time Beau was so weak and couldn't even keep her eyes open for long but she saved
her strength to see me and for that I am so very proud.
Then on Monday 28th of July at 1. 57pm Beau Nicole died in her mummys arms and my world collapsed
around me. I took Beau with me back to my room and kept her sleeping peacefully in a pretty pink
sleepsuit in a cot by my side for 2 days because I just couldn’t bear to let her go.
Beau xx
My precious little baby
I have loved you from the start
You are a tiny miracle
Laying closely to my heart
Each day i felt your presence
Each day your heart beat softly
As only I could know
So I'll keep this in a special place
And remember each year through
Of this very special time in my life
The moments I carried you
xx
Up in heaven there's an angel,
A special forget-me-not,
She's the precious little angel,
Who's forever in my thoughts..
Love you Beau x x x, Love Mama x x x
For Angel Beau and her Mum with love xxx
I know a little angel, halo all aglow
Fragile little wings that take her where she goes
She follows my every foot step
Keeps me always in her sight
Whenever I need a little blessing she makes everything all right
She tips her tiny halo
And blows me a kiss, or two, or three
A little wink and then she's off again
To show the world to me
Things that go unnoticed she quickly points them out
She tells me of God's secrets as she flutters all about
I feel the brush of tiny angel wings
As she gives an unexpected kiss
To have a pair of angel wings is my greatest wish
Her halo gets a little crooked as she gives a hug so sweet
And I just have to giggle when that tiny halo slips and rolls away
But she is always quick to find it and puts it back in place
I can always count on my angel to fill my heart with love
And remind me that life can be easy if I learn to lighten up
Let's pet the pretty kitties and eat ice-cream just because
Laugh just for the fun of it and give lots and lots of hugs
You can learn a lot from an angel
If you stop and take some time
I'd forgotten how cuddly puppies were
and sea-shells really are fun to find
Magic fairies live in dandelions when you
Blow their seeds away
And the beauty of a butterfly can brighten any day
Wherever I lost my childhood
She knows the secret to where it hides
A master at hide-and-seek she finds it every time
She flutters above my shoulder reminding me we all have angel wings
But they are far too delicate to carry a heavy strain
So I'll lay down all my burdens and face into wind
And as I fly with my tiny angel I'll learn to laugh again!
I know a tiny angel with her halo all aglow
fragile little wings take her where she goes
Now I can go with her she has taught me how to fly
And when I long for the innocence of childhood
I know just where it hides!
It took my tiny angel to show me
How to rise above it all
She found that touch of magic I lost so long ago
Even I have angel wings they were there hidden all along
To fly I only had to learn how to simply just let go
Written by Paige Gray
Beau,
hope your sleeping peacefully with all the other angels, and keeping an eye on mummy and fairycakes!
:)
thinking of you always
x
To my angel, daisy may, and cam
Way up above us, twinkling bright,
There must be a million stars in the sky tonight, tonight.
But don’t you worry, no need to cry,
You are the only twinkle that’s in my eye, tonight.
You’re more than one in a million,
No one can take your place,
Though I could try,
There’s no way that I could ever forget your face,
You’re more than one in a million,
No other ever could do,
Cause not even one in a million, could ever compare to you,
Could ever come close to you.
Through all the laughter, through all the tears,
Whenever you need me, I will be standing here, right here.
No need to wonder, don’t ever fear,
Though you may wonder,
I’ll always be right here, right here.
You’re more than one in a million,
No one can take your place,
Though I could try,
There’s no way that I could ever forget your face.
You’re more than one in a million,
No other ever could do,
Not even one in a million, could ever compare to you,
Could ever come close to you.
Could ever come close to you.
Cam
♥♥♥♥♥♥♥♥
xxx
Daisy
♥♥♥♥♥♥♥♥
xxx
My beautiful angel Beau
♥♥♥♥♥♥♥♥
Hello angel x
Like A Comet
Blazing 'Cross The Evening Sky
Gone Too Soon
Like A Rainbow
Fading In The Twinkling Of An Eye
Gone Too Soon
Shiny And Sparkly
And Splendidly Bright
Here One Day
Gone One Night
Like The Loss Of Sunlight
On A Cloudy Afternoon
Gone Too Soon
Like A Castle
Built Upon A Sandy Beach
Gone Too Soon
Like A Perfect Flower
That Is Just Beyond Your Reach
Gone Too Soon
Born To Amuse, To Inspire, To Delight
Here One Day
Gone One Night
Like A Sunset
Dying With The Rising Of The Moon
Gone Too Soon
Miss you more than anything in the world. xxx
Hello my love
Thinking of you and your perfect little angel and your lovely big girl coming to see you!
Just a note to say we wont ever forget xxx
Hi Kaylie
I know you'll be missing your angel and being a big strong brave mummy for Paris like you always are. Beau touched so many people even though she was only here for such a short time. Hope you feel a lot better very soon.
I found a little poem for you:
Do you ever
Do you ever wonder why she was born so very small?
And do you ever ask yourself why she was given to you at all
Do you ever wonder what you did to deserve the pain?
And was it ever really worth the strain?
Did you ever feel alone and that no one cared
And knew they really wanted to but never really dared
Do you ever wonder why you still cry so many tears?
And never thought the hurt would last for all these many years?
Do you ever feel that your life keeps going wrong?
And wonder what it is in you that helps to keep you strong
Do you ever ask just why it happened to you?
And will the memory of then remain your whole life through?
And even if you could turn back time and had a chance to erase that day
You know that even with all the hurt you'd have it no other way
And when we held you in our arms my love it was a gust
Never wanting to let go although we knew we must
And though our hearts are aching and we long to hold you tight
We'll visit you in our dreams when we go to sleep at night
Anon
Love amy xxxxx
Hello my darling
Missing you so much today and i wish i could let you be happy. I just wish i could hold you. I just want to hold you and hug you and tell you that i love you.
Sleep peacefully on the clouds and have the sweetest dreams, night night xxxxx
In a baby cradle, just beyond our eyes,
Our babies play with angel toys that money cannot buy.
Who are we to wish that you had known this world of strife?
Now play on, our babies, you have eternal life.
At night, when all is silent &sleep forsakes our eyes,
We'll hear your tiny footsteps come running to our side.
Your little hands caress us, so tenderly & sweet,
We'll breath a prayer & close our eyes,
And embrace you in our sleep.
I have not turned my back on you,
so there is no need to cry.
I'm watching you from heaven,
just beyond the morning sky.
I've seen you almost fall apart,
when you could barely stand.
I asked the Lord to comfort you,
and watched him take your hand.
He told me you are in more pain,
then I could ever be.
He wiped his eyes and swallowed hard,
then gave your hand to me.
Although you may not feel my touch,
or see me by your side.
I've whispered that I love you,
while I wiped each tear you cried.
So please try not to ache for me,
we'll meet again one day,
beyond the dark and stormy sky,
a Rainbow lights the way.
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