Bella Rose was born on the 8th May 2010 weighing 2.65kg and healthy, or so we thought. We took Bella home three days after she was born, then to return the next day with a very weak, pale, and floppy baby. Thanks to our amazing midwife, we just made it back in time before Bella had a cardiac arrest. There we found out Bella had an interupted aortic arch, VSD and ASD. We were told they could perform open heart surgery to fix this issue and we could be home within 3 weeks with our baby. Unfortunately things didnt go to plan and Bella ended up in the PICU with many complications and many near losses. Bella was diagnosed with VCFS (Velo Cardio Facial Syndrome) the next day. This syndrome is the second biggest syndrome after down syndrome and can affect those with it with up to 180 anomolies. For more information on VCSF look on the VCSF foundation website. To give you an overview of Bellas ten and a half months in PICU I will continue to list what Bella endured. Two open heart surgeries to fix her arch, 3 episodes of NEC (necrotising endocolitis), a tension pneumothorax, too many collapsed lungs to count, a fundoplication, gastrostomy and jajunostomy inserted, a transverse colon stricture removed, many infections, a diaphram plication, many surgical lines and investigations attended to. Just to name a few. Bella was ventilator dependant for the majority of the time she spent in PICU, due to all these complications and inability to wien. However, after her gut surgery when she was about 8-9months old, Bella went from strength to strength. She started to put on weight and was able to manage on just oxygen during the day and just on her CPAP at night. This meant after a time of Bella being stable on these settings we were able to take our precious girl home. So at ten and a half months in PICU we spent a couple of days on the ward and were dischaged home with bella on 1litre of oxygen when awake and a CPAP of 10 while sleeping (mask ventilation). Bella has continued to improve over the last couple of years we have been home and has manage to get off her oxygen and CPAP completely. Bella is still tube fed and will be for a while yet. Bella is also behind in her milestones due to her long hospitalisation and VCFS. We attend many theray appointments and specialist appointments which help Bella along her way. She is an amazing little fighter, and our little miracle. Bella will turn 4 this May (2014). She started kindergarten (mainstream) this year and is loving it. She has made great little friends and all the staff love her. Bella was diagnosed withVelopharangeal insufficiency last year, which means her soft palate isn't working properly creating unclear speech. We are awaiting surgery to fix this problem this year. She is happy enjoying her busy life. This page is set up to take over from the blog my dad started right at the beginning to keep friends, family and others updated about Bellas ups and downs. If it werent for all the prayers and support and the amazing medical teams and our God, Bella wouldnt be here today. Thankyou!
