Tuesday, 15 May 2012

Dairy Queen

I can finally add another expertise to my resume! Dairy Farmer. Its like a 1 woman dairy farm over here. Nathan likes to make fun of me by calling me "daisy" but I sit for hours a day expressing milk and it sometimes seems completely pointless. Why go to so much effort when my baby cant have it yet, only a few ml per day and I have 2 overflowing freezers full. well I know she should be able to have it someday and I want her to have the most nutrition she can get so I keep going.

My days are filled with expressing milk, freezing milk (the millions of litres I have already filled a 2 freezers) and visiting my Jessie. Some days I only get an hour or so with her as I have to keep the other kids entertained, but yesterday for the very first time I got to try breast feeding. FINALLY I got to do what is one of the earliest and closest bonds a mother and child can have. Jessie took to it like a duck to water... a very hungry little duck !! She got a little distracted at times but it was such a wonderful feeling knowing that I was caring in the best way I can for my daughter.
We have also decided to participate in a fundraising walk through the Mater mothers hospital. We are walking to raise money for the amazing organisation that has cared for Jessie but also to raise awareness for gastroschisis. I can only hope that we will actually have Jessie home so she can come on the walk with us.
I have had allot of friends having their babies in the last 3 weeks or so as well, and while I am so happy for them i cant help but feel a little jealous because they get to take their bubs home with them and almost 2 months since my little blessing was born, I STILL don't get to bring her home. It is getting close I know but the time is dragging on. She is still loosing weight instead of putting it on, and having most of her feeds through her Nasal Gastric Tube. It is all a little bit frustrating. I have however learnt an inner strength and patience I never knew I had in me.
Fingers crossed the next time I post a blog it will be about bringing our darling little Jessie home.

Thursday, 10 May 2012

The hard times.

Some days are harder than others, I look at my darling girl's little face and wish with everything I have I can scoop her up and take her with me. The pain of not being able to bring my baby home, is some days, unbearable. ill sit and cry for no reason other than I desperately crave to have my baby home. I never got to hold her when she was born, I only got to see her for a few minutes before they took her to theatre for her very first operation. She was 2 hours old. I'm her mummy I should be there at every single minute to hold her and care for her and keep her safe.

I guess that's one of the hardest things to think about, I wonder, did I do this to her? what if one days she hates me for having to go through all of this? will she understand? I know she will, but these are the horrible emotions I have been going through for months now.
I yearn for the sleepless nights, the dirty nappies, the crying, because that is what being a mum is all about. I sometimes feel like i'm not a mum again because i don't get to have Jessie at home.

I want to be the one thing she knows is safe. I created one of the most amazing things in the world and the world doesn't know about her and they should because she is AMAZING. I look at her and fall in love every day. I just wish with all I have in me that I had my Jessie bear home with me. I don't feel whole as a woman.

Everyday when I walk through the doors at the hospital I see a new mum taking home their brand new baby. They look tired yet blissfully happy in their own little world. I sometimes cry as I walk up to Jessie's room because I cant be sitting there with packed bags, flowers, balloons and teddies ready to go home. I have known for a long time I wouldn't get to take my baby out those front doors for god knows how long, yet it still upsets me.
She is not so different from the rest of us, she just wont really have a belly button, and it seems so superficial to think my daughter might be teased one day for this (I know how teenage girls can be) But I know that we will show her one day how much she had to go through. Up to 20% of Gastroschisis babies do not survive. Reasons vary as to why some don't make it, so for that reason Jessie needs to know that she is very special.
Mothers day this weekend will be hard with out having my baby girl home with me, but ill have time with both of my beautiful daughters, even if it has to be at the hospital for part of the day. I know I am extremely blessed to have these two girls in my life. They say that babies hold the meaning to life... I think they ARE the meaning of life. Falling in love every time I see them is my idea of heaven.
HAPPY MOTHERS DAY - to all who are reading xoxox

Monday, 7 May 2012

Our Story

On the 24th of March 2012 our lives changed in a way that we were yet to comprehend. We knew our darling baby girl would be born with gastroschisis; a 1 in 5000 birth defect in which there is a cavity in the babies abdominal wall causing large and small intestines to protrude from the body. I would like to share our journey as parents and more importantly Jessie's journey in being a gastroschisis survivor.

Through this blog I want to share our journey to get our baby girl better and home, and create some awareness. A lot of people tell me they have never heard of gastroschisis and while the stats say its only 1 in 5000, it is fairly common.

It has been, and still is, a very emotional thing to go through. I'll never forget the day the doctors told us our baby had a problem. We went into our 14 week Nuchal Translucency scan, it was a "just in case" sort of thing and really I just wanted another excuse to see our baby again. After about 40 minutes of scanning and happily watching our baby move around the sonographer told us there was a defect. We had never heard of gastroschisis and after a lot of tears together, and with our family, we set about researching every single possible piece of information that was available. I googled, you tubed, read about, dreamed about, obsessed about, finding out what our baby would be facing.

There were days at work I couldn't even talk on the phone, I would just start crying. I would see a mum with their perfect new baby and think "that wont be me". The thoughts of, what did I do wrong to deserve this to happen and 'why me' plagued my mind day and night. I could never relax and just enjoy being pregnant. There were countless scans and specialist appointments, counseling, and down days. If it weren't for such an amazingly supportive family I couldn't have remained so strong.

Jessie is now 43 days old, and I will continue to tell her story, share information, links, photos and (if I can figure out how to do it) some video's of our brave little girl. I feel that the world should know about her, because she truly is a fighter, and in our eyes the bravest girl in the world.

Stay tuned for more and thank you for your support.

Jodi x