May 26, 2010
Rebecca Moore from Facebook
|
Rebecca Moore
Hi I am a mum of 3
my son was born at 37weeks n 4 days he weighed 5lb 7oz my other daughter
Tenae was born on time she weighed 7lb 14oz but my last was a premmie
baby Zahlia was born 4 weeks early she was a good weight 6lb 1 but had
breathing trouble and was placed in a humidicrib she spent 4 days in
there all up and i...t was 17 days before she got to come home it
was the hardest thing to go through and watch your little baby hooked up
to machines and wires I am so blessed she made it through....She is
just over 7 months but technically they say just over 6 and she is
thriving. To look at her you would never have thought she was born 4
weeks early
Premmie Angels On Facebook
|
May 26, 2010
Alexandra Georgantas from Facebook
|
Alexandra
Georgantas
Premmies are angels
- they are miracles, they are unique, I know because I had a daughter
at 27 weeks weighing 904 grams - who is now 6 yrs old and I thank God
every single day for my miracle!!!
Premmie Angels on Facebook
|
May 26, 2010
Robert Coward from Facebook
|
Robert Coward
what a wonderful
site! we had premmie twins in 1995, born 12 weeks early. our son weighed
1170gm (2lb 9 oz) & our daughter 1460gm (3lb 3 1/2 oz). they are
now almost 15 & are fit & healthy. i wont say it was an easy
road, it was bloody tough with loads of tears, but when you finally
bring your new premmie baby/babies h...ome for the first time it's just amazing! For
those of you going through this now i say hold on for the ride of your
life, take each day one step at a time & remember others have been
down that long road too so we know what you are going through and our
thoughts and prayers are with you every step of the way.
Premmie Angels Facebook page
|
April 16, 2010
Melissa Peter's Story
|
hi all my name is mel and im the proud mum of
two premies! dylan is 8 and was born @ dandenong hospital after a14 hour
labour, he had breathing probs and was intubed then sent to monash,(i
got 1 steroid shot stim lungs) he stayed there 4 a wk then ret 2 dandy 4
anotha wk, i was able to express milk & breastfeed him wit...h no
probs, he was 5lb 4oz @ birth, he is great now no breathing probs, just
an attatude prob! my daughter indie is 20 mths, she was born @ monash
in 2 and half hrs! i demanded the steroids up front & was given 2
shots without arguement, she was 4lb 12oz, went 2 bay 3 stayed 4 a day
was sent 2 casey hospital 4 a week then came home, i breastfed both with
no probs, both kids were born @ 33 weeks & 6 days, indie is also
gr8 no probs
See more stories on our Facebook Page
|
April 16, 2010
Rebecca More's Story
|
Hi I am a mum of 3 my son was born at 37weeks n
4 days he weighed 5lb 7oz my other daughter Tenae was born on time she
weighed 7lb 14oz but my last was a premmie baby Zahlia was born 4 weeks
early she was a good weight 6lb 1 but had breathing trouble and was
placed in a humidicrib she spent 4 days in there all up and i...t
was 17 days before she got to come home it was the hardest thing to go
through and watch your little baby hooked up to machines and wires I am
so blessed she made it through....She is just over 7 months but
technically they say just over 6 and she is thriving. To look at her you
would never have thought she was born 4 weeks early
See our facebook page for more stories
|
April 5, 2009
Sarah Claire - Sarah Makes it home
|
Well finally after 16 weeks we made it out the door. It was the happiest day, I really couldnt believe that the day had come!
I
cant believe where this journey has taken us, its seen good days and
bad days, emotional turmoil, joys, hope, tears and tantrums and huge
signs of relief. Its seen so many tears - Tears of hope and joy and
tears of sadness.
On the 28th November 2008 I went to the
hospital for a routine CTG less than 30mins later I was being knocked
out and Sarah was going to begin her fight for life, and my god fight
she did.
Everytime a Doctor said "its not looking good" she heard them and proved them wrong, she wasn't going to give in that easily.
First
it was the first 72 hours are critical - then 48 hours after birth, her
Dr came to my room, her face full of fear as she delivered the news
that my girl was critically sick and a specialist team had been called
to come and retrieve her, she needed specialist care above what they
could give her.
Then we meet with the Dr's at the RCH and they
had that same look. Don't get our hopes up you say, well Miss Sarah
heard you and she has proven you wrong.
At just 735grams you
operated on her, found the issue with her bowels "Malrotation of the
bowel" Ive learnt a lot of medical terminology on this journey and I
hope never ever to hear it again.
At 2 weeks of age I meet with
her consultant - she was recovering from surgery but she was "failing
to thrive" , why they didn't know they were running every test under
the sun to get an answer.
A nutrition drip was keeping you
alive, you were only getting 0.6ml per hour of Mummy's milk, how does
one even measure that out!
You developed an infection called
NEC, while most recover not all do and we again held our breath not
knowing what the next hour would bring. You feeds were stopped and you
were on an array of antibiotics.
Ive sat by and watched a
ventilator breath for you, Ive seen you so still due to morphine, Ive
seen you graduate to CPAP and then finally to completely breathing on
your own.
I waited 11 long days just to hold you in my arms, the
longest 11 days of mine and Daddy's lives, I waited 21 days to change a
nappy and 25 days to put clothes on you for the first time.
Your
first bath was in a steel bowl inside your isolette at 8 weeks old. The
following week I bathed you for the very first time in a baby bath and
I was crying tears of joy, there were days when I didn't think Id ever
get to bath you as a living child.
You spent your first
Christmas and New years in hospital, while I should have still had you
in the safety of my womb. You made it through to 2009 and this gave us
hope, such small things bought us hope.
You reached the 1kg club on the 27th of December, must have been the Christmas Feast original.
At
6 weeks we were finally told of your diagnosis. "Born without a
Pancreas and Neonatal Diabetes", your prognosis was not good. It was
advised that we go home and get a video camera and make as many
memories as possible. There were only 13 other children in the world
like you and the survival rate was only 31%. We started making
memories, everyday I woke up and asked myself would this be the last
day. I didn't want you to be in pain so I was forever checking to see
if you were in pain. They expected that you would pass away within a
few weeks.
I searched the net for story's of success I
desperately needed some hope. I managed to find another family in NZ
who's son was born with the same condition with the same prognosis and
he was now 11 months old and that gave me hope, then I would read of
the 11 that didn't make it and again I held my breath.
I sat
beside you for 16 long weeks, Ive watched your struggle, Ive watched
you so still but as the weeks passed I just fell more in love you as
the days went on. I begged God not to send you to me only to take you
away again, as you approached 8 weeks your vital signs were improving,
we were closely watching you for liver failure as we knew that would be
the start of the finish for you, but as the days went on and the weeks
passed it looked like your Liver had been spared any serious damage.
We have watched you being poked and prodded day in and day out.
Finally
at 10 weeks it looked like you had turned a corner and you have
flourished, you jumped every hurdle, road block, detour and speed hump.
You
came out of the isolette the week after your Due date, finally after 11
weeks!, you lost all your drips, tubes and monitors - Well all except
one.
At 12 weeks of age we put you on a insulin pump and you are thriving my girl, your diabetes has the best control it ever has.
Your daddy loves you to the moon and back, he sits in with you at night and just looks at you in awe
We
started breastfeeding at 12 weeks as well and it was great to reach
that milestone, its one I wasnt sure we would ever reach with you.
I
think you have surprised a lot of the Dr's and Nurses, you have taught
me some of the greatest lessons in life and I'm glad I have been able
to travel this road with you, our family has been through so many
emotions and somehow we have managed to hold it together for the most
part.
Ive met some truly inspirational people on this journey, Ive formed close bonds with people I would never have met otherwise.
You
have so many "Auntys" out there that too have ridden this roller
coaster with us, they have picked us up when I thought all hope was
lost, they are my NICU angels. They have hoped and prayed and urged the
higher being not to take you back and it worked.
At 13 weeks you
were to undergo another surgery, this time it was to reconnect your
bowel, you are yet to have a "dirty nappy" so I was dancing with joy
after your surgery when you did your first poo. You only needed to be
ventilated for 2 days after your surgery and you seemed to be making a
good recovery, however late on day 2 after your operation you started
developing Stomach distention, the Dr's were not too concerned at that
point. That night it got alot worse and you had alot of gas buildup,
you had xray after xray and the next morning the Drs called us in to
tell us that you had NEC, I couldnt believe it, you had got NEC a
second time!!!
The battle was on again, but you battled through
and finally after 7 days of Antibiotics you were ready to start feeds
again, it was a slow process starting off at 3ml/s every 2 hours, but
after 5 days you were back up to full feeds
A few days after
your operation, mummy arrived in the morning to see you and you were
surrounded by Cardiologists and cardiac surgeons and an Echo had
revealed that you still had a large PDA and they were worried it was
causing your heartrate to be low, but due to your tiny size the only
way to repair it was via open heart surgery. You had just been under a
general and you were currently battling another NEC infection so it was
decided to watch it and repair at a later date, hopefully when you are
bigger and stronger and it can be done in a less invasive and risky way.
So
after 16 weeks, 112 days we got to walk out of the hospital with you in
our arms, it was the longest 16 weeks of my life that saw us all go
through many many emotions, we have met some absolutely inspiring
people along the way
Sarah - You are my miracle, my darling
angel how you came through I have no idea, but we have now had you home
for 2 weeks, finally we can stop holding our breath and jumping when
the phone rings in the middle of the night.
Next Sunday on
Easter day you are being Baptised, so are your 2 cousins who were born
on the 27th Jan, you are 2 months older than them and although still so
small you are definetly a little miracle, it will be a very special day
indeed and one we never thought would come.
Love you my "sarebear" to the end of the world and back again
Love Mummy
|
April 5, 2009
Sarah Claire - We Should be home but the rollercoaster continues
|
Well last Update we were home and hosed, infact we did have Sarah home, all for one day.
We
then returned to hospital for a Simple Surgery, well I guess with Sarah
you can never really say anything has been simple thus far.
This
time Sarah actually went down to theatre and atleast wasnt operated on
at the bedside, watching her go through the doors to theatre and being
left holding her bunny rug was really hard, through this whole journey
Ive been able to hold her hand so that she knows mummy is right here,
but this time I couldn't and my child's life was literally in someone
else's hands, reminded me of the day she was born, it was totally out
of my control and up to the surgeons and Sarah herself.
So
Surgery started at 830am and I was told it would take 1.5-2 hours, 930
came and went, so did 10am and then 10.30am. I was expecting to see the
surgeon any minute, but then it was 11am and no news. Finally at 11.30
I got the news that all went well and she was on her way back to NICU.
I
followed her up there and once back on NICU, a wave of emotion hit me,
it didn't even look like Sarah, I had left her all wide eyed and now
she was ventilated and sedated on painkillers. It was a pretty
emotional day all round but she had made it through yet another surgery
and her little body was getting some well deserved rest.
A
friend at the hospital who's little boy is also in NICU kept me company
most of the day, she came in to see Sarah later that night and
commented on how "good" she looked, so I took that as a good sign as
she herself has seen her little boy through a few surgeries.
Wednesday
and Thursday were probably the toughest days - the tried quiet a few
times throughout the day to take her off the ventilator but she wasnt
able to breath on her own, so I continued just sitting there and
watching. On Thursday they started turning down her Morphine infusion
and she started waking a little, it was so good to see her eyes open
again!
Friday morning I called early to see how she had gone
overnight and was relieved when they said they had extubated (taken her
off the ventilator) at 6am, I was so relieved - she was breathing all
on her own again!!!
I spent the day with her not leaving her
side much that day. Michael stays at the hospital on weekends to give
me a break and so I can spend a few days with the other kids at home,
and I was emotionally drained, in a week Id gone from having her home
to seeing her back on a ventilator and a machine breathing for her.
When
I left on Friday night I had spoken to the consultant on the ward. We
were heading for home and Sarah had been waiting for about 2 weeks for
a repeat echo, a previous echo had shown that her PDA in her heart was
still open and I didnt want that causing any delays in getting home.
The consultant assured me that while yes her PDA is still open it is
not causing her any issues and was "insignificant and not an issue"
She
also passed a bowel motion on Friday afternoon and I was so excited,
after 98 days I had finally changed her very first dirty nappy.
Overnight
Friday night and Saturday morning her tummy began to distend, this was
our one fear, she had xray after xray and alot of bloods taken. Friday
night when the distention was not looking good they started treating
her for NEC and I was thinking "here we go again", she was started on 3
Anti-biotics and they were aspirating her stomach contents every hour,
this was helping, along with her Antibiotics to bring down the
distention. The surgeons were called to review her and were not
convinced that she did indeed have NEC but the consultant were not
convinced she didnt have NEC so she was to remain Nil By Mouth for
another 7 days and Anti-biotics to continue.
By Saturday night
she was quite unsettled and very very hungry and the nurse gave her a
dose of Morphine and she slept the whole night.
The next week
was to go so slowly, sitting there watching her suck the life off that
dummy and by Wednesday she had almost given up ever getting fed and it
was again an emotional week to go through.
On the Tuesday
however I arrived at the hospital around 8am to find her surrounded by
heart surgeons, she had some episodes of Bradycardia - the same as she
did following her first surgery. The consultant that had come on
Tuesday was of the opinion that the PDA was the cause and called the
cardiologists in view of doing surgery. I spoke with the cardiac team
and they advised that due to her size the PDA could not be done as
closed heart surgery.
Everything had happened too quickly,
Friday night her PDA was "insignificant and not an issue" and almost
overnight without her "clinical state" deteriorating we were talking
about open heart surgery. To say the least my head was spinning. While
all this was happening the surgeons had come in to say yes lets start
feeds, only for the Neonates consultant come in saying - No feeds,
Sarah has NEC.
I was so confused with different Dr's saying different things and bu 1030am that day I was a ball of tears.
Already
having one child with a heart condition I guess I know more than the
average bear, if Sarah's PDA was an issue she would be having regular
desats, she would be lethargic and having probs with weight gain, but
she had none of these signs, infact she was sating at 99% most of the
weekend. Sarah has had that PDA since she was born, there had been
plenty of opportunity to act on it.
So I asked to speak with the
care manager, I felt as if everyone was being reactive instead of
proactive and I was not prepared for Sarah to undergo another surgery
so soon, certainly not a surgery that is no medically indicated and a
life or death situation. So I said well you can send the heart surgeons
down here all you like but I will not be signing any consent forms.
I
had a chat with the social worker and then finally at 630 that night
the Neonates consultant came to speak with me. After an hours of
discussion it was agreed that the PDA closer was not something that
needed to be done urgently and we would re-assess in 3 months, if it is
still open then I will consider the operation, but she will be bigger
and stronger and able to have it done as closed heart surgery.
I
was eager for Friday's ward round, Friday was scheduled feed day!!!!!
There was also change of consultant so I wanted to make sure I was
there and there was no more change of plans. I was so relieved when he
said lets start back on EBM with creon and start as 2 hourly feeds.
They were to start at such a small rate - only 3ml/2 hourly, but it was
a start, or so I thought so.
Dietican then came and said Sarah
cant have EBM she cant digest it, I explained that for the last 15
weeks she has been having EBM with creon supplements to aid digestion
and she has thrived, I mean obviousiy she has grown from 735 grams. She
said she would talk to her boss and get back to us. Well at 430 she
still hadnt come back to us. The afternoon ward round was on by this
stage and the consultant said lets just do what they want over the
weekend, we were then told we couldnt get the formula until monday, I
was furious - how could this be happening, Sarah has been on no feeds
for 10 days, surely this could have been sorted in that time so when
the go ahead to feed was given she could start feeding immediately. The
consultant then said I dont care where you get it from just get it and
get it now!
So Last night I came home for the weekend and Michael has gone in. What a week it has been.
Feeds
are going well. She is now on 9mls every 2 hours and hopefully once she
shows she is tolerating they will increase the feeds at a much quicker
rate than 3mls every 12 hours.
We are aiming for home next weekend, what a day that will be.
I
am meeting with her consultant on Tuesday and will be making it clear
that I would like her home next weekend and hopfully he will work with
me to ensure that happens.
Well I shall sign off here, I really should update this more often so its not so long to read in one hit!
|
April 5, 2009
Sarah Claire - Srah's Final Surgery and Discharge Home
|
Well finally after almost 13 weeks we are on the way out the door.
I
cant believe where this journey has taken us, its seen good days and
bad days, emotional turmoil, joys, hope, tears and tantrums and huge
signs of relief. Its seen so many tears - Tears of hope and joy and
tears of sadness.
13 Weeks ago I went to the hospital for a
routine CTG less than 30mins later I was being knocked out and Sarah
was going to begin her fight for life, and my god fight she did.
Everytime a Doctor said "its not looking good" she heard them and proved them wrong, she wasn't going to give in that easily.
First
it was the first 72 hours are critical - then 48 hours after birth, her
Dr came to my room, her face full of fear as she delivered the news
that my girl was critically sick and a specialist team had been called
to come and retrieve her, she needed specialist care above what they
could give her.
Then we meet with the Dr's at the RCH and they
had that same look. Don't get our hopes up you say, well Miss Sarah
heard you and she has proven you wrong.
At just 735grams you
operated on her, found the issue with her bowels "Malrotation of the
bowel" Ive learnt a lot of medical terminology on this journey and I
hope never ever to hear it again.
At 2 weeks of age I meet with
her consultant - she was recovering from surgery but she was "failing
to thrive" , why they didn't know they were running every test under
the sun to get an answer.
A nutrition drip was keeping you
alive, you were only getting 0.6ml per hour of Mummy's milk, how does
one even measure that out!
You developed an infection called
NEC, while most recover not all do and we again held our breath not
knowing what the next hour would bring. You feeds were stopped and you
were on an array of antibiotics.
Ive sat by and watched a
ventilator breath for you, Ive seen you so still due to morphine, Ive
seen you graduate to CPAP and then finally to completely breathing on
your own.
I waited 11 long days just to hold you in my arms, the
longest 11 days of mine and Daddy's lives, I waited 21 days to change a
nappy and 25 days to put clothes on you for the first time.
Your
first bath was in a steel bowl inside your isolette at 8 weeks old. The
following week I bathed you for the very first time in a baby bath and
I was crying tears of joy, there were days when I didn't think Id ever
get to bath you as a living child.
You spent your first
Christmas and New years in hospital, while I should have still had you
in the safety of my womb. You made it through to 2009 and this gave us
hope, such small things bought us hope.
You reached the 1kg club on the 27th of December, must have been the Christmas Feast original.gif
At
6 weeks we were finally told of your diagnosis. "Born without a
Pancreas and Neonatal Diabetes", your prognosis was not good. It was
advised that we go home and get a video camera and make as many
memories as possible. There were only 13 other children in the world
like you and the survival rate was only 31%. We started making
memories, everyday I woke up and asked myself would this be the last
day. I didn't want you to be in pain so I was forever checking to see
if you were in pain. They expected that you would pass away within a
few weeks.
I searched the net for story's of success I
desperately needed some hope. I managed to find another family in NZ
who's son was born with the same condition with the same prognosis and
he was now 11 months old and that gave me hope, then I would read of
the 11 that didn't make it and again I held my breath.
Ive sat
beside you for 13 weeks, Ive watched your struggle, Ive watched you so
still but as the weeks passed I just fell more in love you as the days
went on. I begged God not to send you to me only to take you away
again, as you approached 8 weeks your vital signs were improving, we
were closely watching you for liver failure as we knew that would be
the start of the finish for you, but as the days went on and the weeks
passed it looked like your Liver had been spared any serious damage.
We have watched you being poked and prodded day in and day out.
Finally
at 10 weeks it looked like you had turned a corner and in the last 2.5
weeks you have flourished, you jumped every hurdle, road block, detour
and speed hump.
You came out of the isolette the week after your
Due date, finally after 11 weeks!, you lost all your drips, tubes and
monitors - Well all except one.
A week ago we put you on a insulin pump and you are thriving my girl, your diabetes has the best control it ever has.
Your daddy loves you to the moon and back, he sits in with you at night and just looks at you in awe
Over
the weekend I was able to start breastfeeding you and it is the most
wonderful feeling, I didn't know if I would ever been able to do that
for you.
I think you have surprised a lot of the Dr's and
Nurses, you have taught me some of the greatest lessons in life and I'm
glad I have been able to travel this road with you, our family has been
through so many emotions and somehow we have managed to hold it
together for the most part.
Ive met some truly inspirational people on this journey, Ive formed close bonds with people I would never have met otherwise.
You
have so many "Auntys" out there that too have ridden this roller
coaster with us, they have picked us up when I thought all hope was
lost, they are my NICU angels. They have hoped and prayed and urged the
higher being not to take you back and it worked.
Tomorrow you
are going for a CT Contrast study just to check that your bowel is all
good to be reconnected, they are 99% sure it will be.
On Friday
you return to surgery. This time you are going to go to theater!, last
time you were so small, fragile and sick that theater came to you and
they operated at the bedside!
Once your surgery is over with you
are going to bolt for the door! Today they organised Hospital in the
home, they contacted our GP and MCHN to say you should be going home by
next Friday.
Sarah - You are my miracle, my darling angel how
you came through I have no idea, but within 2 weeks you are going to be
at home, finally we are going to bring you home and we can stop holding
our breath and jumping when the phone rings in the middle of the night.
Love you my "sarebear" to the end of the world and back again
Love Mummy
|
April 5, 2009
Sarah Claire - Almost 12 weeks old
|
I was talking to a friend last night, she also had a little premmie,
her DD was born at just 26 weeks and weighed a tiny 568grams.
We were thinking back to when our angels were only hours old and how very fragile they were, how absolutely tiny there where.
I
was initially disappointed that I had to be knocked out for the
C-section, it wasnt what I had planned and I really wanted to see Sarah
being born, I was going to get the screen lowered as she was pulled
out, I was going to get photos of her being born.
I dont think
that I have written this detail before but I am now glad that I wasnt
awake for the c-section. Once sarah was pulled out she needed to be
"bagged" for 3 mins, it doesnt seem like long but had I had an epidural
3 mins watching them trying to get my daughter to breath would have
felt like a eternity and it would have broken my heart. Now I know that
Dr's have a duty of care but I do wonder at what point do they stop and
say this is not working? Do they look at each baby and say yep this one
will make it? or this one just isnt strong enough. I dont wish any
mother to ever witness the OB's and Paed bagging or doing resus on
there newborn, tiny incy wincy child.
Sarah is almost 12 weeks
old, its unbelievable how far she has come and the hurdles that she
just kept jumping and jumping, its like she has been on a obstacle
course jumping this and weaving this!
On Monday morning they
installed her Insulin pump after some teething problems the first day
we seem to have it working. Her levels were down between 5-7 last night
for about 8 hours but climbed back up to 20 about 4am this morning, so
they have made an adjustment to her insulin base rate for the next four
hours and we will see if that helps her.
The surgeons have been
around as her Stoma has prolapsed which means that more of the bowel
has come out so surgery has been booked for ASAP possibly Friday or
Monday next week.
I cant wait to change a dirty nappy! Now that
is something that I thought Id never say, but Im excited. Sarah has
never had a dirty nappy in her life so far, and its amazing what things
you get excited over on this journey through NICU. I remember changing
her nappy for the first time when she was about a week old, something
so simple yet to me was such an exciting thing, just one of those
things that you take for granted with a full term baby.
She is
also taking oral feeds really well, last night had 5 oral feeds in a
row, which is quite alot for a baby her size and she is on 2 hourly
feeds so does tire more quickly. Hopefully today we are going to 3
hourly feeds which will be better for Sarah!
Well am signing off
for now, am staying at Ronald MCDonald house this week, which is great
to only be across the road from my girl!
|
April 5, 2009
Sarah Claire - Becoming a parent in NICU
|
Becoming a parent to a baby in NICU is so very different to becoming a
parent in the comfort and privacy of my own home, I find it difficult
to act and feel like a parent when so much seperates me from my newborn.
From
the very start I wanted to touch her, to stroke her face and her skin,
but I was afraid of pulling something out, I felt like I had to wait
for instructions from the curses. I so desperatly want to be involved.
I pumped milk from day 1, have seen her every day, touched her and held
her, Ive read stories and sang lullaby's, but still there is that empty
feeling when every night I go home to a babyless house, there are
flowers and balloons and cards and gifts from friends and family but no
baby to wake up several times a night, the only thing I awake to is a
breastpump..
Suddenly I was no longer pregnant and yet I am far
from being a mummy again, where did all of this fit into the glowing
dream of motherhood, where did I fit into it? What can I do for my baby
but look at her tiny body, covered in wires and tubes and tell her I
love her and Im sorry I couldnt bake her longer.
Sarah is doing
remarkably well, yet day in day out I watch over this child, always
frightened, always waiting for something to go wrong, wondering what
the next day will bring, always just one step ahead of exhaustion,
hoping today will be the day where I feel like her mother, wanting to
be able to do more for Sarah, wanting to feel like I am worth more in
her life than a couple of bottles of breastmilk.
At night I go
to sleep and dream I am pregnant and wake up full of hope - and then
remember I am not, I lay in bed at night wondering if she is settled
and peaceful, is she calm or is she agitated, does she need her mummy
or daddy and instead of peeping in her cradle which is all set up next
to my bed, I have to call a nurse and ask.
Each evening I blow
my child a kiss through her plastic house and walk away, every nerve in
my body is screaming at me that this is wrong, this isnt what it should
be like, every fibre in my body wants to hold my child and never let
go, and yet night after night I leave.
I just look to the light and hope that one day that I do get you pick you up and never let go comes around soon.
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April 5, 2009
Sarah Claire - My Baby has lost weight
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Well last Thursday we made some progress in getting Sarah of her TPN an
Lipid infusions, was a big step as until now these had prevented sarah
from suffering from Malnutrition.
She is weighed every 2 days.
Monday she weighed in at 1900 grams, we thought we were only about 2 days off the magical 2kg mark
Wednesday she had a loss and dropped to 1844grams
Friday she only had gained 4 grams taking her to 1848
Today was weigh day and I was really hoping for a big gain. However its another loss, so she is now only 1832grams
The
cant fortify her milk due to her Stomas, all they can do is up her
feeds to be 200mls per kilo, so about 15mls per hour. Currently she is
on 12mls per hour
Her sugars are still fairly erratic, they are better than what they were though so that is a positive
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April 5, 2009
Sarah Claire - When Will The Journey End?
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Well here goes, I need to write down my feelings somewhere.
I am tired, exhausted, anxious, emotional, teary, angry all in one day.
I
cant sleep, its 1am in the morning and I cant sleep, it will probably
be 3am before I nod off and then Ill be up at 7am. Thats 4 hours sleep,
how does one survive on 4 hours sleep day in day out.
I know
that Sarah is in the best place right now, but my heart is aching, its
aching to be a family under the one roof. Some weeks things seem to be
the same in regards to her progress, weeks go by and it appears that
she is no worse, but no closer to coming home. I need her home.
The
hospital is depressing, its full of sick children, every corner I turn
lately I see a parent crying or a child suffering and I know that what
to expect in a hospital but after weeks seeing it, its really beginning
to effect me.
Birth is not meant to be like this, you are meant
to fall pregnant, sail through pregnancy, have that glowing look, wear
maternity clothes, have people guess how far you are along by the size
of your belly, feel your baby doing somersaults inside you. You are
meant to feel the agony of contractions and your baby being born into
this world, you then are meant to rest in hospital for a few days,
feeding your baby and getting to know them before coming home. That is
how pregnancy and birth should be and its not how it was for me at all.
I
feel as if none of that happened to me, I barely felt any movememnts,
not like with the other kids, I was barely wearing maternity clothes, I
just looked like I had put on some weight, not that I was cooking a
precous baby in my tummy. The end of my pregnancy was full of stress
and tests, tests and more tests, what ever happened to enjoying
pregnancy.
I knew I was going to have a c-section delivery and I
was fine with that, but I didnt even get the chance to discuss my birth
plan with my OB, I thought I had plenty of time. I really wanted the
screen lowered so that I could have seen my child being born, I missed
that the last 2 times and it was something I really wanted to happen,
instead I was knocked out not knowing what I was going to awake to, I
woke in agony, the pain was indescribable, worse than I had ever felt
in my life.
I dont feel like Im a strong person, I feel like I
am crumbling, inside I feel like crawling into a hole and not coming
out till this journey is over, realistically I know I cant do that but
boy do I want to.
So when will this end, or will this ever end, when I think I can see some light at the end, that light gets dimmer and dimmer.
I
want my own health back, I imagine because I am barely sleeping that my
own energy stocks are depleted, so I seem to forever have a cough, or a
rattly chest, or a sore throat, its always something!
Today I
was cleaning the bedroom, I twisted the wrong way and felt a tear in my
abdo, now I have this stabbing pain right behind my scar. Normally Id
be back to playing netabll and physically feeling fantastic, right now
I feel really fragile.
Anyway thats enough babble for tonight, might sign off and try and get some sleep
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April 5, 2009
Sarah Claire - Dear Sarah
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Dear Sarah,
Today you are 9 weeks old, that is 63 days in hospital.
When
I think how much you have endured it breaks my heart, why oh why did
this have to happen to you, I have asked this question over and over
and over and I still don't have an answer I'm afraid.
Shit when I look back over the last 9 weeks lets see what you have faced
* You entered the world at just 735grams
* Day 2 you were ventilated, placed on Morphene and transferred to the Childrens Hospital
* Day 6 - Your bowel was malrotated and you were operated on
* week 3 you got NEC and your feeds were stopped
* You spent your first Christmas in hospital
* At 6 weeks old you were diagnosed with "No Pancreas" and "Neonatal Diabetes"
* We were told that your prognosis wasnt good and to prepare to say goodbye over the coming weeks
* You were not ready to give up so you proved them wrong and kept on going and going
Now
you are 9 weeks old, you now weigh 1848 grams and anyday now will come
out of your humidicrib, you are also about to have another operation to
put your bowel back into one peice.
You are one amazing little
girl, through everything you have held on, some days its been touch and
go and we have been prepared to say goodbye. You are definetly a gift
sent from heaven and there is som gaurdian angel up there watching over
you, I dont know who it is but they are one special person for letting
you stay with us
Love you to the moon and back again
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April 5, 2009
Sarah Claire - 6 weeks and counting
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Sorry its been a few days between updates.
The
Diagnosis almost a week ago really hit us for six as a family. I
remember driving home from the hospital that day, the thought of
loosing my daughter had me in tears the whole way home. I called my Mum
and tried not to cry but I simply couldnt stop the tears from flowing.
I
knew it was bad news as soon as we got to the hospital and we were
directed to the "quiet room", I didnt cry in the meeting, but as soon
as the Dr and nurse left the room I just broke down, and as always
Michael was there to tell me that somehow we will get through this
together as a family.
The future for Sarah is so unclear, I wish
to wake up tomorrow and this has all been a dream, but I know that
isn't going to happen. Some days are easier than others, some days I am
just an emotional wreck that just keeps on putting on foot in front of
another just to get through the day.
I saw my OB today for my 6
week postpartum check, it was such a sad day for me, usually I am
attending this appointment with a baby in tow, sitting in the waiting
room with my baby and so it was fairly emotional, then came the news
that as my bleeding still hasnt stopped that I need to go back to
theatre for a curette to clean out my uterus, good thing is he can put
a mirena in at the same time. So its booked for Friday, I am sure that
he thought I was abit crazy when I said I cant possibly go back to the
Mercy on Friday to have it done, I just cant go back there right now,
its where life threw me on this road and I just cant go there, not yet.
Quite possibly a very irrational thought, and its something I will work
through with time, but right now I just cant.
Had my mum and
sister down on the weekend and that was great and they were able to
hold Sarah for the first time so that was pretty special.
Ive
had alot of people ask how is Sarah going and the short answer is she s
hanging in there, there really is no change in her conidton, she is
still only on minimal feeds, still on TPN and they continue to chase
her sugar levels.
Medically speaking they are doing everything
they can for Sarah, they will manage her symptoms and keep as as
comfortable as possible, right now she is not showing any tell tale
signs of Liver damage and her LFT's are still within a normal range,
she was looking slightly yellow yesterday and this is being monitored,
it cant be too bad though as she is not under lights yet.
Jessica
must have overheard Michael and I talking though cause she came into my
room on Thursday night and said "Mummy is Sarah going to die" I didnt
know what to say so I just said Im not sure, I just dont know how much
to tell the kids and even how to tell them so for now I am avoiding the
subject.
Its a hard road thats for sure, its a road that I wish we were never on and a road I wouldnt wish on anyone at all.
Sarah
darling - Mummy and Daddy love you very much and hope and pray that you
prove everyone wrong and go on to live a happy and healthy life with us
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April 5, 2009
Sarah Claire - The Diagnosis
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Well where do I start.
Its been a very emotional day for all of us.
As you know this pregnancy and birth has been a rollercoaster ride and a half!
We spoke with her consultant in length today.
They have confirmed that Sarah has no pancreas and she also has Neonatal Diabetes.
There
is only a handful of people that have this condition, Sarah is as far
as they are aware the 9th person to be born, only 3 are still living.
The
issue for Sarah lies in a few places the main one being with her liver.
Of the existing Children know to have this condition the 6 children
that had liver damage all passed away within the first few months and
the neonatalogist has suggested this will be the likely outcome for
Sarah and for us to prepare for that.
As you can imagine this is
all still sinking in and we are yet to talk to the other children about
it as we are just not sure how and when to discuss.
For the
moment we are thankful for the almost 6 weeks we have had with Sarah
and will treasure what time she has left however long that may be.
I
have managed to contact one of the other living Children, a little boy
that lives in New Zealand. Drs had the same concern for this little boy
with his Liver, thankfully his liver turned out not to be damaged and
he is now 9 months old and thriving.
As you can imagine its all still sinking in, I am meeting with the Endo Team today to discuss things in more detail.
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