THE STORY OF GORGEOUS CLARA

by - January 17, 2018

From the minute you see those two lines appear on that pregnancy test your life has changed, you're no longer just a person, you're a mummy. You begin to think differently, feel differently and your outlook on life changes almost instantly. What you don't think about or expect is that your lives after birth may not be 'normal'.
Let me introduce this dark haired beauty to you all, this is Clara Joan (or CJ as she is also known) and she is the daughter of one of my best friends and her wonderful husband. When Acacia and Dean found out they were expecting they were completely over joyed, its something they had both wanted so badly and I couldn't have been anymore excited for them. They found out quite early on at their 20 week scan that Clara would be born with her stomach on the wrong side of her body. They were told that this would unlikely cause any problems in the future and it was just something they needed to be aware of. This was the start of their incredible strength of parenthood, it was also the start of their great relationship with the staff at the JR and the NHS, from what Acacia told me they were extremely thorough on checking everything they could to make sure they new exactly what they were dealing with. 
Clara decided to come 5 weeks early and within two weeks her new life they found out that she wasn't a very well little girl. She suffered with terrible jaundice and underwent intense light therapy to help get her levels under control. Her levels roller-coasted and by doing this she kept herself in hospital. 
Unfortunately that was just the start of Clara's time in the JR, on December 27th she projectile vomited a green bile which got her immediately transported to HDU for tests and monitoring, they all came back clear and they were almost discharged on New Years Day. Clara then had another attack of projectile vomiting and was then sent to intensive care where she would undergo two operations. One to investigate and remove 75cm of her bowel and have a stoma fitted and the second one to remove a few more cm of bowel and see if the remaining bowel was viable. Much to all of the professional's surprise she pulled through and the remaining bowel is viable. She is a medical miracle and has defied all of the odds the surgeons have given, she's a beautiful, strong little fighter. 
In summary of what has happened she is now left with Short Gut Syndrome and heterotaxy, as her stomach, liver, and non functioning spleen are all in the wrong places. 

Everyday she is proving what a determined little girl she is, she is now out of a incubator and has her very own little crib. She's allowed to wear her pretty clothes and she isn't one bit camera shy showing her Mummy and Daddy her beautiful smiles. She will be moved to the children's ward at the John Radcliffe and will spend the first year of her life there. She will learn to crawl, take her first steps there and be closely monitored for infections. 
I am in complete awe of my incredible friend and her husband. They have stepped up and accepted what is happening and have shown strength and courage like I've never seen before. Clara is blessed to have such wonderful, strong and inspiring parents. They both spend their days with Clara soaking up anytime they can with her, doing as much 'parenting' as they are allowed. The staff have been incredible with getting them both to feel like they are still Clara's parents and that their involvement in her day to day life is just as crucial as her medical help. Acacia spends from at least 8am - 9pm with Clara 7 days a week now Dean is back at work, she makes sure he feels like he isn't missing out with regular updates. 

Acacia is documenting Clara's journey on her Instagram which you can find here and also on her own very special blog which you can find here. Go and follow them on their incredible journey.

Apart from having the most incredible parents Clara has an exceptionally wonderful Uncle George who is doing a charity bike ride to raise money for SSNAP who support sick and premature babies at the John Radcliffe hospital. They also provide invaluable support to the parents whilst they are with their children in special care. You can donate and read more about this on his go fund me page here.


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