
| Location | London |
| Age | 21 days |
| Cause of Death | Brain Haemorrage |
| Date of Birth | 07/07/2008 |
| Date of Death | 28/07/2008 |
| Visitors | 1,373 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.
To my baby girl...
Hello little star
I got your memory box out very early this morning, i like getting it out when there's not many other people awake and it feels like it's just you and me. I had a bit of a cry too, a cry for everything i've lost and that you've lost. And everything you'll never have and never experience. You deserve everything and yet you've got nothing. I would give everything i have to hold you and Blair together as twins should be.
You were grown and born together so you should have lived together for more than 3 crap weeks. You should be by her side. You should be kicking and holding my finger. Starting to see the world. Starting to live. I should be able to stroke your little head and whisper in your ear how much i love you. And i should be able to sing to you and tell you about your uncle and auntie, but you know them now already don't you, and i should be telling you all about your big brother and the big brother you'll never meet. You should be keeping Blair company.
So many should be's isn't there..
Here a little poem for you
The world may never notice
If a snowdrop doesn’t bloom
Or even pause to wonder
If the petals fall too soon
But every life that ever forms
Or ever comes to be
Touches the world in some small way
For all eternity
The little one we long for
Was swiftly here and gone
But the love that was then planted
Is a light that still shines on
I love you
I feel like i know whats happened now sort of, that makes it better doesnt it. Look at at what weve been through. Me, you and Blair together..
Love and kisses forever, love mummy xxx
A SPECIAL ANGEL NEEDED IN HEAVEN,
sorry for your loss,your little cherub now resting in baby heaven with all the baby angels that was taken to soon xxx
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