Wednesday, 25 March 2015

Grace's Journey - Gastroschisis

So I haven't been on my blog for months- this is because I'm proud to announce I had a little girl
She was born on the 19th November, weighing 4lb 3oz
She was born at 34 weeks, 6 days - just over 5 weeks early. 

As I have explained in a previous blog, she was born with gastroschisis, a condition which the intestines grow outside of the body. 
I went for a routine scan on the 19th November at the hospital which she would have to have her care at (not a local one as they couldn't care for her special needs) and they found that my placenta wasn't working, after having about 20 minutes checking her heart rate they found it was dropping drastically and I was told then I needed an emergency c section, within minutes I was being prepped for surgery, I've never been so scared in my life! About half an hour later my little girl was born at 2.51pm they wrapped her up I saw her for literally 30 seconds and she was whisked away into intensive care, I was stitched up and sent to the recovery ward, because my body reacted badly and I haemorrhaged and lost a lot of blood and had to have a blood transfusion. After an agonising few hours, my daughters surgeons came and informed me she was going to surgery to have her bowel put back inside. I signed consent and waited. Then at 10pm they came to say she was going into surgery, I waited and waited, finally I was transferred onto a ward and put into a cubical on my own whilst I heard mothers with their babies in the room next to me - I've never felt so helpless in my life. The midwives forgot about me, eventually at 12am I pressed the emergency button and demanded to know what was happening with my little girl - they told me she had just come out of surgery and I could see her once she was back in intensive care. Eventually at 1am, a nurse took me to the neonatal unit she was on, I was in a wheelchair and they took me into the intensive care unit, there was my tiny beautiful little girl, she had her bowel put back inside but they couldn't close it as the bowel was quite dilated (bigger than it should be) so a silo was put over to keep infection out. She was on a ventilator but I was told that she was breathing mostly for herself. I stayed until 4am, when I nurse told me to go get some sleep. 
Fast forward to the Saturday (3 days old) grace went for her second surgery, to close her stomach up. This went successfully. On the Sunday at 4 days old she was taken off her ventilator and was breathing for herself. I visited all day, and was told off numerous times by nurses to go get some rest, but I didn't want to leave my little girl - it's the worse feeling ever that you once had this tiny human safe in your stomach but then all of a sudden you have to be away from them. 
At 5 days old, I came in after going back to ward after some tea to be told my little girl was ready to come out of intensive care, they had dressed her in a tiny sleepsuit and a knitted cardigan, which were kindly donated by someone (every item of clothing I had was too big - even the special premature ones!) and she was put in a small cot. She was wheeled down to the "surgical" part of the neonatal unit. And they asked me the best thing I've ever heard "would you like to hold your daughter?" I started crying, and said yes straight away. I sat down, and the nurse handed her over to me. I'm only little myself, at 5ft 3, and a small frame, but she was barely the length of half of my arm. I sat cuddling her for the first time, and finally I felt like a mum. 
For the next few weeks it was the same routine, I'd be there apart from to eat and sleep, and gradually my confidence with such a tiny little person grew, I learnt how to bed bath her, and care for her. She wasn't being fed because she had a blockage (so couldn't poo) so she was fed via a broviac line (a central line from under the arm to a artery near her heart) which fed her all her nutrients and calories from a drip. She had a tube in her nose which went into her stomach which brought bile up,because of her not eating it created a lot of bile. She also had a monitor to check her breathing. She had to wait until 6 weeks for another operation to remove the blockage in her bowel. So now it was just a waiting game. 
When she was a month old, a lump began appearing on her stomach, she had a man made belly button because of the condition, but it was getting bigger. After a week of watching it and after a course of anti biotics they discovered it was a hernia- part of her stomach pushing up. And then at 5 weeks old her breathing drastically changed, she was out back on a monitor which they found her oxygen was decreasing often, her stomach was swelling too, they realised that the blockage was causing problems and pushing her organs - mainly her lungs upwards, and talks began on moving her surgery date forward. 
On the 30th December, a day before 6 weeks old, I was told grace was having her surgery. I spent the morning just cuddling her, and preparing myself for the surgery- I was told many different outcomes, they didn't know how badly damaged her bowel was until the surgery. At 3.00pm, she was put in an incubator and we made the walk down to theatre, there I was allowed to take her to the room outside the operating room, I gave her a kiss, and left. It was the worst moment of my life, I'd bonded with this little girl for almost 6 weeks, I'd been a proper mum for 6 weeks, held her and cared for her, it was so much harder this time around because I'd formed a bond with her. 
At 8.30 - 5 and a half hours of waiting, the surgeon came into the waiting room. They said the operation was a success, they'd reattached the two ends of the bowel together and unmatted it all, she was being brought back to intensive care at that moment, half an hour passed before we could go in to see her, she was double the size of her normally (she was only 7lb at this point) and looked awful, I sat for a while with her when all of a sudden her eyes shot open, it turned out they hadn't sorted out her pain relief in time, so they had to quickly administer sedatives and morphine, it was the most awful experience of my life. 
My little girl spent 6 days in intensive care, during this time, her lung collapsed, she had to be on life support as she wasn't breathing for herself and had numerous chest infections. They managed to re-inflate her lung but she had a lot of mucas on them, they tested for pneumonia but thankfully that came back negative. But against the odds she pulled through. 
Fast forward again, and 9 days after her operation I came in in the morning to do her cares and change her nappy, and there for the first time she had pood (tmi sorry! But she was 7 weeks old and it was a miracle) they then said they would monitor how many times she did this and the bile in her tube had to go down, then she could start feeding. 
Eventually, at 8 weeks old, I came in in the morning to Amazing news, they was giving her milk! They started on two feeds at 2ml down her tube every 3 hours to see how her body would handle it, she did brilliant so they put her up to 5ml that day, the next day she went to 10ml and I gave her her first bottle! Over the next two days she went up again, until she was on 20ml but that's when the problems started - she started choking and turning blue, she was still on a monitor to check her oxygen and they found that her oxygen was going to 20%, and had to give her oxygen. They decided to stop her feeds in a bottle and they would carry on putting her feeds up. 
Three days passed and we went for a video fluroscopy, they gave her a bottle with normal thickness milk, then milk with thickener in, and she had like a moving X-ray above her throat, they found it was going into her lungs when it was normal thickness. 
A specialist came the following day and decided she needed to feed a special way, laying on her side, with a special teat and with ALOT of thickener in her milk, it worked! Slowly we was getting somewhere. She was on her full feeds for her weight and she was having a few bottles a day - but only 10ml at a time the rest down her nose tube. My little girl was taken off her drip, next they removed her broviac (Central line) and finally they started plans of moving to a local hospital. 
A few days later we we're transferred to the local hospital - I've never hated a place in my life, we was only going to establish feeds and for them to get to know us in case we needed to go back into hospital. We we're transferred the Saturday night, and on the Sunday they told us we could go home - on the condition we returned the next day to get formally discharged and get graces medication. I was so excited. After 74 days we finally was allowed home. We got home at 2.40pm on the 1st February, and I've had my little girl where she belongs since! 
If you actually managed to read all that, thank you. It's taken me a lot to revisit all of this, and I hope to raise awareness of gastroschisis and sick children. Without the medical staff and nurses and surgeons, my daughter would not be here. I'd like to thank everyone that helped, not only grace but helped me get through this. I have met some truly inspirational people on our journey. And a huge thank you to the sick children's trust - without you I would not have been able to see my daughter, I lived 64 miles away and would not have been able to bond with my daughter if not for a place to stay. It restores my faith in humanity, thank you to all the amazing people. 

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22 year old textile designer & mum to a little miracle.
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Maira Gall