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.
|
April 5, 2009
Sarah Claire - My Baby has lost weight
|
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
|
April 5, 2009
Sarah Claire - When Will The Journey End?
|
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
|
April 5, 2009
Sarah Claire - Dear Sarah
|
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
|
April 5, 2009
Sarah Claire - 6 weeks and counting
|
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
|
April 5, 2009
Sarah Claire - The Diagnosis
|
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.
|
April 5, 2009
Sarah Claire - reflections
|
Rule One - Never read back over your own blog entries, its plain scary!
This
is the first time I have ever written a blog, and its mostly my random
thoughts, how I am feeling in the moment that I write.
During
this journey, so many people have said how strong we are as a family,
but I can tell you behind the words I have struggled at times.
The
last 4 weeks of my pregnancy I was an emotional mess, my poor husband
he must have thought what happened to my happy go lucky, go with the
flow wife. My dear friend in Sydney, not sure how she heard my though
the snuffles some days.
I worked up until 3 weeks before Sarah
arrived, the day of my Amnio test was the last day I was there, I had
work that was unfinished and I was still in the middle of training my
Mat Leave replacement - poor girl
Then the day of the 27th of
November I actually wrote an entry in here that I had a feeling of
dread, I have no idea really what is was but it had me upset and
emotional and searching for answers, it was like I could feel my child
slipping away, there were no physical signs, it was just a "feeling"
Mothers intuition maybe.
I spoke indepth that night to a few
friends online, told them that I had this utter feeling of dread, was I
going crazy, the reassured me I wasnt.
The next day I woke early
still with that uneasy feeling, my child was slipping away from me, I
spoke to a few people that morning and that feeling of dread got less
and less.
I think up until this point I was in denial to a
point, maybe I didnt comprehend just how small and sick this baby was,
Id had a small baby before, my 3rd child was just on 2kgs at birth and
he was fine, so was telling myself it will just be like last time,
Drs/OB's always prepare you for the worst. This baby would have a
growth spurt and everything would be fine, id make it to term you wait
and see.
That feeling that something was wrong was gone, like
a weight lifted from my shoulders, I casually said to my friend well I
better run, might go to the hospital for the CTG early today, its
Friday and its always a madhouse up there on Fridays.
What was
to unfold I never expected, it came out of left field and hit me for 6!
You would think by reading my blog, surely you could see it coming but
I couldn't. Had it happened a week earlier, or 3 weeks earlier when I
had that gush of fluid I could have seen it coming.
I had been
taking belly shots the whole way through this pregnancy, had I known I
would have taken a final one that morning, hence the last one was taken
2 weeks prior to Sarah's arrival.
I was even relaxed when I got
to the hospital, there was a midwife there that use to see me all the
time for my CTG's, her name was Renee and she was so lovely, She would
call Sarah the pesky baby!, as she was so small it was hard to get a
decent trace, she would keep on moving the bugger! Only Renee didnt
work on Fridays, pity about that as we had some weird conversations as
she sat there and traced buggalugs.
I loved hearing my babys
heart beat away it was so soothing. As the midife was trying to pick it
up on that day I wasnt even that concerned when she was having trouble,
then she left and came back with another midwife, she asked me again
where do we normally pick it up? She had a feel around to see if she
could see what position bubs was in, she had a go and no luck either,
she did pick it up briefly but I think she picked the placenta up and
not the baby. She too left the room not saying much, at this stage I
became worried and that feeling of dread from the night before
returned. I reached for my phone and sent my dear friend in Sydney a
SMS "at hospital having trace done, they cant pick up the heart". Even
though I had that feeling of holy shit what is happening, if only Renee
was here, I as still calm expecting another midife to come and pick it
up. Instead they came back and said you are due for a bio-physical scan
today so we will do that first and check where bub is laying.
I
was taken into a ultrasound room with a Dr, why wernt the midwives
doing like they normally did, this thought didnt actually cross my mind
at the time, I just hopped up and went along with it. I could hear them
whispering, it was kinda like I as watching a movie, it wasnt me
actually laying there, surely this was all a dream. Then the questions
"When was the last time you felt baby moving" I had to think, I didnt
really know, kicks had just become part of daily life, crap need to
think "Yes Im sure I felt movement this morning, maybe last night
though.
I should have grabbed for my phone and sent DH a message
telling him to hurry and get to the hospital but I thought oh its all
ok, they are just going to monitor things for abit longer today.
More
whispering, more questions. Then she tells me can I move on my side
abit, she is pointing at the heart beat on the screen and saying oh its
coming up abit now. Then she tries paging my OB, she wasnt really
talking to me, it was more conversation between her and the midwife.
Finally she comes and says that your baby isnt doing to well, her heart
rate is awefully slow and we cant detect any flo to your baby. I as
shitting myself, oh God please dont take this child, not now, Ive come
to far, I was trying so hard not to cry, I dont know why Im sure any
normal person would have. Alex isnt answering the page, they are not
taking the probe of my stomach they are watching the heart rate go
down, then it comes up then drops down again. Finally the Dr says I
know he is in the hospital I saw him only about an hour ago. She tells
the midwife to make sure that heartbeat doesnt get much lower and tells
me to lay on my side and not to move. I want to reach for my phone but
Im too scared to move. Se leaves the room and returns after a few
minutes, behind her is Alex, finally they have found my OB, he will
tell them that is all ok, mayb want to admit me for observation.
Alex
and the other Dr talked for a few seconds, he then took over the
ultrasound. I could see by the look on his face that he wasnt going to
say its all ok. He just said very calmly "Your baby isnt doing so well,
her heartrate is very low and there is no blood flow to her. We need to
deliver this baby now. I could feel the tears welling up. The only
thing I managed to say was can I call my husband first, but the reply
that came back I wasnt expecting, Im sorry there is no time. He then
turned to the other Dr and said we need to call a "Code" "call it as a
green".
Ive never been in such an emergency situation - my DD
was born by "emergency c-section" but certainly not the emergency this
had turned out to be.
On the outside I was trying to be strong,
dont cry Karina, if you start you wont be able to stop, but on the
inside I was shaking, I didnt want to do this alone. Here I was
surrounded by people they were getting IV lines into me, getting my
into a gown, asking me if my baby would have a religion, asking me to
verify my name, my allergies, what medications Im on, what time did I
last eat. I didnt know, oh shit people I had my clexane injection at
11am, now I am going to have to have a general. I didnt want these
people around me, rushing around. My OB had disappeared, presumably to
getting ready to deliver this baby. Here I as about to have this baby
and noone close to me knew of my situation, noone was aware that this
baby was to born into a world she was simply not ready for.
As I
was being wheeled out I somehow managed to get DH's mobile number to
the midwife and she promised she would call for me, how I hoped he was
just around the corner and could get there pronto. As it happened he
was on the other side of Melbourne and he said it was teh first time in
his life that he was scared to walk into a hospital, all he was told
was that I had been rushed to theatre and that the babys heartrate was
extremely low.
I get into theatre where they confirm due to my
injection of clexane they are unable to do a epidural/spinal and it
would have to be a general. At this point I was crying, Alex was trying
to reassure me but here I as about to have the mask put over my face
and I didnt know what I was going to be facing when I woke up, was my
baby going to be with us still or was I going to get the "Im sorry we
did every thing we could" Would Michael be there, could they contact
him.
So off to sleep I went. this must have been about 140pm by now.
I
woke at 3pm and OMG the pain was worst than I had remembered from
previous c-sections. I as no longer pregnant just in intense pain, they
came over and said press this for pain relief, I was pressing for dear
life. Then they said you have a stunning baby daughter 735 grams, she
is doing well, your husband is with her did you want him, "oh yes I
did, the tears were coming again, I think tears of Joy - my baby had
held on to meet her mummy.
That night as the longest night so
far. I as hooked up to a PCA with a cathetor in and clearly not able to
just jump up and go and see my child. I have never prayed so much in my
life for her to hold on, please bubby girl hold on till mummy can come
and meet you.
She did, she listened to me and she fought through
the night. the first time I saw her I was shocked alittle, she was so
tiny but she as alive, somehow she managed to just hold on.
How
she did Ill never know, She definetly has a guardian angel looking over
her, she had so many people praying for her, praying for her to hold on
|
April 5, 2009
Sarah Claire - 5 weeks old
|
Dear Sarah,
You are 5 weeks old today.
Each day seems to
go so slowly, the day drags on while I sit beside you in your
incubator, I just sit there and watch you, I listen to all the
machines, I watch the monitor, I stare at you and every day that passes
I fall more in love with you each and every day, you are amazing and
your strength is also amazing.
You had some visitors today, your
Aunty Glenda came to see you. She saw you when you were 2 days old, you
were fairly sick, infact she came to the Mercy on the Sunday, your
stomach was distended and you were in pain and had been placed on
Morphene and ventilated, you wernt moving or responding to touch, you
were there resting and gathering all your strength to fight the battle
ahead. Today you were so much better, you were opening your eyes, you
even turn your head towards me when I talk to you, its a feeling I cant
describe to know that you know I am your Mummy and that you are getting
to know my voice.
In the last week you have had a few up and
down days. You had trouble tolerating your feeds and you had really
high fluid losses over 2 days, unfortently all that weight you had put
on to get to 1190grams you lost over a 24 hour period, so it dropped
you back to 1040grams.
On New years eve you needed another blood
transfusion, but boy did it help you, I went to see you on New Years
Day and you were so much more alert and so much more pinker!
You
get weighed tomorrow again, it will be interesting to see how you go. I
can tell you have grown, you are still a tiny little dot but you are
starting to fill out. You are taking shape and really starting to look
like a "baby"
Some good news came today. Last night your lood
sugar levels went up to 21, normally they would increase the amount of
insulin they are giving you, but they decided to try something
different. You are receiving nutrition through a drip until you are on
"full feeds" the nutrition drip has 15% sugar in it, so they have
reduced the rate at which you are getting this and your sugar levels
have come down to between 5-8 and they have been stable all day, the
nurse seemed to think that you were getting too much sugar and that
your pancreas may be starting to work and maybe now that you are over a
kilo its deeloping abit more.
Well baby girl I am heading off now, Im about to come back in and see you an deliver some more milk!
Love Mummy and Daddy!
Oh I forgot, I am going to add some photos from birth to today so people can see you are growing!
|
April 5, 2009
Sarah Claire - 4weeks old and now a member of the 1kg club
|
Sorry I havnt updated here in so long.
Wow though what a roller coaster this ride has been.
My
last update I think she was about 11 days old. On day 11 we got to hold
our miracle of a daughter for the very first time, it was such a
special moment for Michael and I. Its hard to comprehend until you have
been there, watching your child through a plastic house that is
basically keeping them alive, hearing them cry is just aweful and
heartbreaking as my motherly instinct is to pick them up and comfort
them but I wasnt able to, I wasnt able to comfort my childs cries and
that was really hard.
Here is a pic of our first hold of our miracle daughter.
I
think it was day 14 in which they started her on feeds, finally she was
able to have some EBM, what a relief for me, it was progress and we
hadn't had much of that up until now. She started on 0.6ml per hour,
not a lot but it was something, then she went to 1ml, then 1.5ml, then
2ml and finally 2.5ml.
On Sunday the 14th December at 16 days
old we received a phone call, Sarah wasn't doing to well, her stomach
distended, her breathing erratic, temp up. They had stopped her feeds
and suspected she had a NEC infection. They did a lumbar puncture on
her tiny body and were awaiting the results, in the meantime feeds
would be stopped for 10 days and she would need antibiotics and
possibly surgery if it got any worse.
By Thursday she had made
some improvement so it was decided that she would be able to restart on
some feeds. She restarted at 1ml per hour.
By day 21 they
decided that besides her sugar levels she was stable and would move to
a Special care nursery room of the neonatal ward, well done my girl
another step forward, I was getting positive that one day I will be
able to bring you home.
Unfortunately the move was short lived
and she was moved back into a NICU room about 20 hours later, this
happened on Christmas Eve.
Christmas was so hard, everyone
around us is celebrating and quite simply its a hard time for us to be
happy. We did the best we could to give the older kids the best
Christmas but there isn't much for us to celebrate at the moment, this
year the Christmas spirit is on hold.
Everyday
I feel like I am holding my breath, every hour, every day, every week
in NICU I am holding my breath. Each time the phone rings at night I
jump and hope its not the hospital asking us to hurry back in.
Sarah
has a definete problem with her Pancreas. They have done a scan and it
was not seen, our Pancreas has 2 fuctions one that breaks down the fats
etc in our food so that our intestines can digest the food, the other
as most people knows is responsible for creating Insulin. Presently
Sarah's pancreas is not doing either of these fuctions so she is on
oral enzymes that breaks down her food so she can digest it and she is
also on a Insulin infusion to regulate her blood sugars. The oral
enzymes are not a problem, however being dependent on insulin is quite
a problem for discharge planning.
Weigh gain is slowly getting there, she now weighs 1044grams, so up 309 grams on her birth weight.
Sarah
has had a few visitors which she loves! She had her Aunty Jac yesterday
and what good timing as we had her out for a cuddle yesterday so she
also got a special hold of the princess. Today another friend came to
visit, last time she saw Sarah she was surrounded by Doctors at the
Mercy and was in the process of being ventilated so she was looking
alot better this time and it was alot less dramatic
I am going
to sign off here as this is probably a lot to digest, I thankyou for
reading and will update more frequently as I know that there are a few
people/family following her progress and thinking of us all.
|
April 5, 2009
The First 10 Days - Sarah Claire
|
It all started 10 days ago and wow what a journey so far
I guess
it all started at 30 weeks.Bub had been measuring small since 24 weeks
so I was on fortnightly growth scans. first it was 3 weeks behind, then
4 weeks, then 6 weeks. So at 30 weeks it was recommended that I have an
amnio done. That night I had a gush of fluid and contractions a few
hours later, they managed to stop them with nifedipine. Then 2 weeks
later sitting at home and again the contractions start, back to
hospital start nifidipine again and labour is stalled once again. Have
a groeth scan and we are at 728 grams at 32.6 weeks. Discharged from
hospital on the Friday night my the OB covering for my OB. See my OB on
the Monday, feeling great again. He puts me on daily CTG's and twice
dialy Bio-Physical profiles.
Tuesday CTG is great, Wednesday CTG and Scan are perfect, Thursday CTG is again great, Friday is where it all unravelled.
Go
for CTG midwife tries for 30 mins to pick up the heartbeat to no avail,
suggests that bubs may have moved position and we shoul do the scan
first. Taken round to the Peri-Natal Dr to perform the scan, measures
AFI and S/D Flows, then starts prodding my tummy trying to get the baby
to move, I could see the heart beating so was not at all worried. She
then tells the midwife to get my OB on the phone and quickly. She tells
me that my baby isnt doing to well and she is going to find my OB as
she had seen him in the hospital earlier and to lay on my side and not
to move, the midwife then holds the probe on me and watches bubs
heartbeat.
OB walks in the room they look at a few things and
then he says Im sorry but we have to deliver now, the bloodflow to your
baby is absent and she is in distress.
he calls a code green and
people coming running in, I want to call my husband but they tell me
there is no time and they will call for me.
At 1.15pm I was having a scan, at 1.54pm my tiny daughter is born by c-section.
Welcome to the world Sarah Claire, you weight just 735g, 37cms long and HC 24cms.
You are breathing, you are on CPAP whisked straight up to NICU. You are enjoying you little nest in your incubator.
After
a day they change you to low flow oxygen, you are doing fantastic or so
I think. The Drs then tell me that your adbo is distended and they are
starting you on anti-biotics.
On day 2 mummys dear friend comes
to meet you. We go downstairs for a coffee then I take her up to meet
you. As I walk over to your corner, there are doctors everywhere, they
come over and say we are putting her on the ventilator and morphine,
her stomach isnt getting any better and she is starting to feel some
pain from it.
later that day they come and see me on the post
natal ward, its not good news I can tell. You stomach is becoming more
distended and they are worried that you have a bowel obstruction. They
tell me they have called the NETS team and they are coming to get you
and taking you to the Royal Childrens Hospital. I call your Daddy, tell
him to come quickly so he can go with you.
You get settled in, after 4 days they decide they cant wait any longer, your not getting better so they are going to operate.
They
operate and find that your first poos are blocking your bowel its very
thick and sticky so they clean you out and due to your size they cant
re-attach your bowel so you have a stoma, when you reach 2kgs they will
be able to reattach it.
You are now 10 days old, you are off your ventilator and back on CPAP and your bowel is now working.
Tonight
you are having your very first milk feed and that is very exciting for
your mum, you are taking baby steps, small steps to the path to home
where you belong.
|
April 5, 2009
The Rapid Arrival Of Sarah Claire
|
When we got our BFP and learnt that we would be adding our 4th and
final child we were both very excited. The first trimester travelled
along fairly well, i did have some bleeding and morning sickness was
really bad between weeks 8-12. I went for my 12 NT scan and the results
were excellent. I started feeling fantastic at this stage and loved
watching my tunny grow.
At my 19 week scan, I was showing as only 17 weeks, so was told to come back in 2 weeks.
I
was put on 2 weekly scans as OB was concerned that this baby was
developing growth restriction. By 29 weeks it was oficially diagnosed
as IUGR (Inter uterine growth restriction)
I had an amnio done
at 30 weeks to rule out infection and chromosomal abnormalities, the
results came back all clear. The night of the amnio I had a gush of
fluid and starting having contractions a few hours later. Was admitted
to hospital where they managed to stop my labour.
2 weeks later started contracting again, so another visit to hospital and luckily they managed to stop things again.
By this stage I was put on daily monitoring having a CTG done every day and a bio-physical profile done every second day.
On Friday the 28th November at 33.6 weeks I went in as per usual for my
CTG and bio-bysical profile. I sit on the bed and get ready to hear by
baby's heart beating away. After 30 mins the midwife still could not
pick up the heartbeat. I was starting to worry at this stage so they
said we will go and do the bio-physical profile first ad see what
position bubs is in. Normally the midwives do the scan check for a few
things to indicate that bubs is still happy.
On this day they
took me into the room next to the one I usually go into, there they
introduced me to a perinatal Doctor and said she was going to assist
with the scan.
I was so happy when I saw my babys heart beating
away, but she wasnt moving around, maybe she was just sleeping I
thought. The Doctor wasnt saying much, but I could see my baby and see
her heart beating away so I figured she would tell me at the end that
all was ok. She then said to the midwife we need to get Alex on the
phone now (Alex was my OB), she then told me that there was a problem
with my baby and had I noticed that she hadnt been moving much. She had
been a little quiet in the last day, but I also have an anterior
placenta so dont feel all the movements. DH had actually asked me that
morning if I wanted him to come for the scan, but I said no its only
ever very quick so dont stress and I will ger a pic printed out. Had I
knew what was going to unfold I would have told him Id love him to come.
They
were still trying to get Alex on the phone, the Dr then told the
midwife to hold the probe and make sure that the heartrate stays
relatively stable, and she told me to lay on my side and try not to
move. A few minitues later she returned with Alex, he was actually in
the fete monitoring unit checking up on anotherpatient. He came in and said "Your baby isnt doing to well today and we
need to deliver this baby as soon as possible, her heart was
bradycardic and she had not moved at all during the scan despite them
trying to get her to move. He then explained that there was no flow at
all through the Umbilical cord so there was no choice but to deliver
now.
I asked if I could call DH, but he said there was no time,
but would get one of the midwives to call him for me. They then pressed
a emergency button and called a Code Green, people came running in the
room and I was quickly changed into a gown and rushed downstairs to
theatre.
It all happened so quickly. At 1.15 pm I was having an ultrasound thinking look all is good, the heart is beating away.
At 1.54pm on the 28th November my daughter was born by emergency c-section. She weighed just 735g, length 37cms, HC 24cms.
I
woke up in recovery at about 3pm, they went and got DH and they bought
me in a photo, she was so so tiny, she was in NICU and they said she
was doing well. I kept asking DH are you sure she is ok, have you seen
her?
It was then time to go up to the post natal ward, they took
me past NICU on the way. I was so grogy and my vision was really blurry
and they said can you see her, I said yes but I couldnt, all I could
see was bubblewrap, apparetly she was under all the bubble wrap to keep
her warm.
It was 18 hours before I was able to see her again,
she was in a incubator by now and on CPAP. She seemed to be doing well.
On the Sunday she wasnt doing so well so NETS team was called and she
was transferred to the neo natal unit at the RCH Sarah is 6 days old today, she has already overcome a few obstalces but
has been taken off her ventilator and put back on CPAP and seems to be
gaining some strength.
Welcome to the world to my wee little daughter Sarah Claire.
.
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