Friday, May 8, 2009

Reflections Part One

Well its been a little while since I last added an entry. Life has been quite busy since we came home with our Miracle, Im not even sure where to start.

Well we were discharged after 112 days, it was such a long time filled with such mixed emotions, looking back I really have no idea how I held it together.

I met such mixed familys while in NICU, alot of them where there with their first child and somedays I would find myself saying if this is going to happen then you want it to happen with your first. You can spent as many hours as possible at your baby's bedside without the worry about other children, in so many ways it was more desirable. But then at night I would return home and even if it was midnight, I would pop into the kids rooms and kiss them on the cheeks and know how lucky I was, they were one thing that kept me going, I had to keep going because not only did my tiny tiny daughter that was laying there in hospital putting up the biggest fight for her life, but I had 3 other children at home that needed me to be strong for them and tell them that everything was going to be ok.

I remember that meeting with Sarah's Consultant like it was yesterday. He broke the news of her diagnosis to us and told us to prepare to say goodbye and to make as many memories as we could in the time we had left. That day I was driving home, the tears were streaming down my face and had no idea what to do, where to turn or why all of this was happening. I was meant to be pregnant still, why wasnt I pregnant still, why had I been thrust into this experience, why was Sarah bought into a world she was not ready for and why on earth would I be given such a precious gift only to loose it with the blink of an eye.

I got home and DH was already home and we cryed some more. Our darling 6 year old knew something was wrong. She must have overheard Michael and I talking and she said "Mummy is Sarah going to die" I froze on the spot, what am I meant to say, how do I possibly explain this to a 6 year old, does she even know what Die means. I simply told her that Sarah was realy sick and she was in the best place to get better, I couldnt break her heart and that was the only answer I could come up with on the spot.

That night we sat in bed and we both discussed things that we needed to organise, it felt like we had admitted defeat, we were going to loose our little girl, the Dr's believed we had done everything for her, but sadly there was just not enough known about Pancreastic Agenesis hence why the survival rate was so low. We made a list, have Sarah Baptised, get video camera, call Inlaws and tell them not to put off coming to meet their newest granddaughter and the final thing on that list we could not bear to write, couldnt bear to even think about it.

The next morning I woke up and I was not going to admit defeat, Sarah needed us to be strong for her and that is what we were going to be. I could not think about "making memories" and "preparing to say goodbye", all I could think about was getting this tiny precious little bundle home to her cradle, to her brothers and sister, home to grow into a outgoing, formidle little girl.

As the days and the weeks creeped by I got a little more hope, she was so tiny and there were days where we thought she is giving up, but we never gave up hope. There were hundreds of people following her journey, reading this blog and following her journey on Essential Baby - this was such a lifeline for me, more than people probably realised because when I was falling down they were there to pick me up. To come home after a long day at the hospital and to just read the words "Kat - just checking in to see how you are Sarah are doing today", see I had to keep going and knowing that so many people were hoping and praying for Sarah, for me, for our family was a lifeline. Same with the sms's, the emails, the phone calls, the visits from friends. Even though I had been thrown on this rollercoaster to know that people were going out of their way to visit really was special to me.

NICU can be such a frightening place, especially if you have not ever come accross one before. For people to visit would have been very confronting, they didnt have to but they put there own fears aside for Sarah and it was good to let them into my life for those few hours they were there.

I have so many thoughts running around my head, so my apologies if this entry is alittle scrambled, I promise that Im not doing a Quinten Tarantino on you!

Ive had alot of people say you are such an inspiration, you are so strong to be dealing with this and I really think it came down to the fact that I thought if I broke down who would be there for Sarah. I did however have what I later called "mini-meltdowns" where the emotions all became too much, something would happen to trigger it and I would just cry, cry until there were no more tears to cry. I wanted off this rollercoaster but I couldnt, it just wouldnt stop. There were times where I though "Are we doing the best thing by Sarah, or are we delaying the inevitable" I really had no idea.

Christmas day was the ost Bitter sweet day Ive had in a long time, looking back I could have done better, but at that stage we had no idea what was wrong with Sarah and was very much a hour by hour thing. No Christmas tree went up, there were no flashing lights on our house and Christmas presents wernt even wrapped until Christmas Eve. I had no excitement on Christmas day, I got up and went through the emotions and as I sat on the lounge that morning watching the kids excitement as they opened there presents, I looked around the room and sadness overcome me, Christmas is about coming together as a family and we were far from that, our family wasnt together, At this stage I didnt believe it ever would be on Christmas day.

We had lunch together and the kids seemed to be enjoying the day, I was just staring into space, after lunch we headed into the hospital, as I was driving you could see kids out the front of houses, you could hear the laughter coming from inside, the cars all linning the street as family's and friends celebrated together and here we were driving to the hospital.

I hadnt had a hold of Sarah for about a week by this stage, my arms were aching to hold her in my arms, she had been pretty unstable and on Christmas Eve required another blood transfusion, her 5 in her short life this far. We get to the hospital and the nurse had said she had a fairly rough night but she had given her a sponge bath that morning and put her little Christmas Dress on her that Mihael had bought for her the day she was born, but that was the most handling she could deal with today, so we wernt able to have her out for a hold, my heart was breaking piece by piece.

I think I am going to sign off here for now, but I shall come back tomorrow and write a few more thoughts down.

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