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TrachKid Profile

Nicola was born on the 16. October 2009, after what I thought was a really healthy pregnancy, at 42 weeks gesturation. Labour was straight forward and went well. Immediatly after birth Nicola struggled badly to breath. Everything from there and for the next 3 days is more or less a blur to me. She has been rushed away to be intubated straight away. The next time i saw her she was sedated and tubes were coming and going everywhere. With no-one telling us anything we was left to wait in the familyroom until the decision was made to move her to an other hospital. On arrival we was told she would not pull through and we shouldn't get our hopes up.  But the little fighter that she is didn't give up and with a little bit of persuasion (Nicola needed to be resusitated twice that night) she made it. I can't tell you how proud I  was  and still am, she is my hero. The following days the doctors were busy figuring out was the problem actually is, starting from a lot of smaller things to contaminated samples, several possibilitys were suggested and overthrown, medications tried and discontinued. At all times she was till intubated and on  HFOV (high frequency oscillatory ventilation) and nitric oxide therapy. She was still sedated and didn't get woke up until after her operation. With the first symtoms being severly underdeveloped lungs, a massivly enlarged heart, braindamage, .. Steroids fixed the lung and when the lung caught up the heart reduced itself to its normal size as well. with that clear she was alright to go for a scope to check her airway. Surgons found her to have bilateral vocalcord palsy and performed a tracheostomy. And with that we had the final diagnosis: Bilateral vocalcord palsy, severe GE reflux, chronic lung disease, cerebral polymicrogyria & parietal infarct, bilateral optic hypoplasiawhich all may be caused by a stroke/bloodclot she suffered late on in pregnancy and for months I have been blaming myself: Did it happen when I bumped into this or that? Could I have changed anything if I would have noticed anything? Did Nicola move enough? She is still being fed by NJ-Tube into her intestine, using the NG to asperate her Stomach ( her stomach can't tolerate food and throws it straight back up).I know there is no point in asking those questions and I now have made my peace with how things are.For the first 6 months of her life she stayed in hospitals. Born at Doncaster Royal, rushed off to Leeds General and after she had her trach she got transferd closer to home, the Sheffield Childrens Hospital where we have trained and then back to Doncaster Royal waiting for discharge. All the time she spend in hospital she was oxygen dependant and suffered regulary from chest infections. Since we have had her home, she has been whined of oxygen and never even had a cold. Now at 11 months old she is fantastic, she is the happiest baby on earth and I wouldn't change her for anything. She has started to make a straining, humming noise (same noise you would make pushing something heavy) when she blockes her trach with her chin. She is due for another scope on the 1. October. Apparently doctors are thinking about closing the trach of but that depends on the findings of the scope, so fingers crossed. Just one question though: When she has her tracheostomytube out will she be able to talk or make noises? I hope so, I am dying to hear her giggle. Feel free to email: LucyJohnson123@googlemail.com‎15 ‎September ‎2010

• Gender: Female
• Demographic Region: Europe
• Siblings: One
• Medical Conditions: Reflux, vocal cord paralysis, Chronic Lung Disease, Panhypopituitarism, Cerebral polymicrogyria & parietal infarct, bilateral optic hypoplasia

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