BiographyFinley, my beautiful little trouble maker. He was born at 35 weeks be emergency C section due to foetal distress, prom and sepsis.
He was a good weight but very poorly, he was 6lb 10oz the biggest baby in intensive care but the sickest. He wasn’t breathing on his own and we don’t know how long he was like this for. He was put straight onto a ventilator on high setting at one point a 100% oxygen and still not adequate. He was given two doses of surfactant to try and help his lungs to move. They called this respiratory distress syndrome and told us that we should come and see him.
He was on the ventilator for three days and then oxygen for another day and then nothing for my super-duper baby. This time our consultant presumed reflux so they took feeds slowly. After 2 weeks he was able to feed from a bottle so his feeding tube was taken out and we were able to take him home.
Five days after coming home I found Finley blue and not breathing in bed, we rang 999 and got him to hospital. It was then that they said it could have been an ALTE (apparent life threatening event) and in our case probably caused by reflux. Our consultant gave us omeprazole and domperidone right away and when he seemed to be choking on feeds gave us thickener.
Finley continued to choke on feeds and get chest infections but it was only when he caught bronchiolitis at Christmas was this taken seriously, they gave him a NG tube and we took him home. The speech and language therapist withdrew all of Finley’s oral feeds to try and stop him aspirating on his feeds which has made a big difference but Finley also seems to be aspirating on both saliva and reflux contents. So we are seeing a surgeon later this month to see what the best course of action is, it might be that he needs a fundoplication surgery. We are also waiting on our consultant to see if they can find something that will stop him producing so much saliva.
Finley is currently fed for 15 hours through the day as we don’t feed overnight with an NG tube in case he vomits and chokes. He has very little gag reflex and seems to be behind in his developmental milestones and has been suggested that it could be neurological, a result from his rough start to life.
Finley has now had surgery and is doing really well from reflux point of view but is struggling with his development.
We had the results from Finley's brain scan recently. they originally scanned him to check for Cerebral Palsy due to his birth but instead of finding that they found a large cyst that is taking up a large part of his left temporal lobe.
This has been so upsetting as we really expected all to be well. it has thrown us into a whole new set of doctors. we now have neuro surgeons to see and Finley needs to have special eye tests due to the positioning of the cyst which is sitting right behind his eye to make sure his sight is OK and the pressure is OK, he will have hearing tests to make sure the cyst isn't interfering with that and then rescan to see if this thing is growing in there and if so it might mean brain surgery. Always terrifying.
This is on top of the fact that he still isn't talking. we have been invited to a speech and language course to help us to try and develop Finley's language and understanding. We also attend sing and sign toddler group on a Thursday to try and help him to develop or sign or just be able to communicate his needs to us.
It is all just so much more than we are used to as parents, we can deal with the tube feeding and the gastro surgery but this is a whole new and scary ball game.
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