Tuesday, February 24, 2009

Sarah'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

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