ieuans journey of hope....

This is my sisters story so far;

It was a normal day I was doing the dishes and I felt a gush at first I thought I peed myself a little, thinking maybe it was the baby pushing on my bladder I thought nothing else of it and put a pad on but every now and again I could feel a small gush went to the toilet and knew then it wasn't pee, I rang the drs who informed me to go and get checked at the early pregnancy unit, on the scan the fluid was low but was still in a normal range so told me to keep an eye on my temperature incase of infection and was told If I did have an infection that I would have to terminate the pregnancy as it would put my life at risk. I continued leaking and went back and forth to the hospital on numerous occasions and no one took it seriously till my 20wk scan where they diagnosed me with oligohydramnios (low fluid) and referred me to a fetal medicine specialist. At 21+5wks I had some pressure on my cervix and was feeling really uncomfortable went to the toilet and had another gush this time it went on what seemed like for ages and started bleeding heavily, I was devastated and thought I was going to loose him, I rushed into to L&D when I got to the hospital and confirmed my waters had definitely gone and to prepare to go into labour within 24-48hrs and there was nothing they could do to stop it and because he wasn't viable all they could was give him to us to hold and say our goodbyes before he passed. That night we prepared for the worst and even looked at clothes and caskets for him it was the worse thing I had ever done. 24hrs,48hrs had passed and my little boy was still hanging on in there with a strong heartbeat, I was feeling hopeful again but the drs still warned us that I could still go into labour at anytime and once all the bleeding stopped and cramping I was allowed home to carry on the pregnancy. I was told that my baby boy due to no fluids was going to end up severely disabled, end up having poor lung development which might not be unable to sustain life I couldn't give up not after finding and reading all the success stories on the little heartbeats page as there motto is where there was a heartbeat there was hope and that kept me going. At 22+6 I ended up back in hospital as I was bleeding and loosing large clots again I thought this is it he was coming as well as the drs but still he hung in there. I was then admitted on bedrest was only allowed to walk to the toilet and back. At 23+5 I started cramping and having tightenings as well as loosing clots, was told at this stage we will see how big he is and if he tries to breathe they might help him but if they thought he wasn't strong enough they would just give him to me straight away, that night we prepared for the worst again. He held on and so they decided to give me some steroids to develop his lungs quicker. He held on till 25+3 on the toilet where I gave birth to him myself due to the drs telling me I was constipated when I was really in labour, which my fetal specialist knew due to him coming through the cervix on the scan, he only weighed 542g and was told he had IGUR (growth restriction) due to no fluid.

During my admission to hospital for bed rest, little heartbeats sent me a pack out with guidelines on what to do and what not to do, what the drs should be doing etc. I also recieved a heartbeat bear to obviously record my baby's heartbeat, leaflets, wristbands, pen and journal to document our journey and a colouring book and pencils to keep me busy. These packs could help save baby's lives and empower mums with knowledge on what care and treatment to strive for. We have had a rough rollercoaster ride in the nicu we are now on Day 106. He has been diagnosed with a PDA, CLD, 2 pneumothorax's which required chest drains to treat due to PIE. We nearly lost him then to a bowel obstruction which nearly perforated in 3 places which caused sepsis and kidney failure at 5wks old and due to this he had to undergo emergency surgery, they didn't think he was even going make it to theatre due to the kidney failure so we had him baptised and all the family came in to say there goodbyes but miraculously his kidneys started functioning again and was finally stable enough to go for surgery 2 days later, he lost 3cm of bowel and had to have a split ileostomy (stomas). He has battled through inline sepsis god knows how many times, and now has a hickman line in his chest to help reduce the infection risks. He is now currently recovering from another emergency surgery due to his last stoma having narrowed causing another obstruction so had to have another 3cm of bowel removed and a new stoma formed. So I have decided to use my new love of running to promote this amazing little guy (my nephew)and this incredible organisation that helps people to understand what is going on when they are getting no answers and the packs that the families get is free and so is the non stop support she has given to each and every person going threw this. It is just amazing so I will be running a half marathon on the 1st October 2017 in support of them.

So far my training is going great, first photo is me on my low mile run after taking 2 weeks break and the following photo was my 7 mile run down Barry Island

So please support the work of Little Heartbeats and donate a little so that more families can get the support they need from this incredible non profit company. And to promote PPROM so that people know the signs and get the medical attention they need