here - Little Hearts Matter

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 12Personal StoryBelow Kay and Colbie-Kate Ross share their story.Written byKay & Colbie-Kate Ross12Well, here we are two days beforeColbie-Kate’s 7th birthday, we canhardly believe it, we never thoughtwe would see her get here.The morning after she was born a nurse cameinto the room, had a look at Colbie-Kate then toldme she needed to take her away for some tests.I phoned Stuart, her daddy, and told him to getup as soon as possible. When he arrived wewere taken into this horrible little room - we justknew this was a bad news room. We were toldher heart hadn’t formed properly, there were lotsof things wrong with it so they couldn’t really giveus a name, but a couple of names of the thingswrong were Pulmonary Atresia, AVSD and RightAtrial Isomerism. They said that it wouldprobably be kinder just to let her go as they didn’tthink she would survive the operation that theycould give her.We thought a little different and didn’t thinkthere was a choice, we had to try and give ourtiny baby a chance. We had to have hope. Soafter getting transferred from the special babyunit in Edinburgh to the The Sick Children’sHospital at Yorkhill in Glasgow, our preciousbaby had her first operation at six days old. I canremember being in the waiting room in ICU andasking out loud, why us, when another lady whowas waiting told us we were special parentspicked for a special baby. It gave us a differentview on things.She was doing well and before long she wasmoved up to the ward. It wasn’t easy trying tofeed her with a tube through her nose into herstomach but we had to until she learned to suckon the bottle. Her little body was so tiny but itnow had a huge scar under her tiny armpit. Wewere scared to touch, hold or cuddle her in casewe hurt her. After two weeks she provedeveryone wrong and for the first time in her littlelife we were taking her home, a place we neverthought she would get to see. This was a hugemilestone for us, but we were told that althoughshe had done so well there would be moreoperations and she probably wouldn’t do asgood. There was no way of fixing her heart, thereis so much wrong with it and that they could justimprove things for her. As long as we still haveher here with us and she’s happy we can onlytake one day at a time.After we were home, Colbie-Kate made goodprogress and was walking at nine months oldand a proper little chatterbox, she was on specialmilk called Infatrini to give her more calories butluckily she kept well.Then in June 2003 just before her first birthdaywe were sent to Yorkhill for a catheter test andwas told there was a slot for the followingMonday for her next operation (another BTShunt like her first one but on the other sideunder her arm). We don’t know how we didn’tnotice how blue she was, I think you must justget used to it, but we didn’t realise how much shewas needing the operation!Two big scars already and she wasn’t evenone yet. Again, she proved them wrong andrecovered well and was home in plenty of timefor her first birthday.May 2004 and Colbie-Kate had her secondcatheter test, then the doctor came to talk to usand said they weren’t sure what to do next. Theywere going to discuss it again and talk to us atthe next outpatient appointment. We were toldthen that in six months to a year, Colbie-Katewould have to go through a major operation to tryand repair some of her arteries; this was a hugeoperation, a lot bigger than the other two. Wecould only go home and enjoy our time with her,every minute was precious. We had a lovelyChristmas and tried to fill her life with as manylovely memories as possible and now we hadher little sister Charlie with us, she had someoneelse to enjoy it all with! (After lots of scans andlots of worry, Charlie was born healthy).The waiting for the postman every morning fora letter with her operation date was awful, I’msure he thought I was stalking him behind thedoor! The consultant had told us to telephoneYorkhill if we didn’t get a date soon so we did,and found out it would be in about three weekstime. Then one day, there was a message on ouranswer machine so I phoned back and was toldshe would be admitted on Friday (three daysaway), with her operation being on the Monday.We waited until they took her to theatre, thenluckily we got a room at the Ronald McDonaldHouse as we had done on previous times, whichis a godsend as we live 100 miles away. We gotsettled in the room, Stuart was playing someshooting games on his laptop and I decided towrite all my feelings down and my memoriesfrom Colbie-Kate’s birth onwards, not somethingI usually like doing - writing, but I think it helpedme take my mind off things and now I’m glad I