Sunday, April 5, 2009

112 days, 16 weeks later and 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

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