Everyone says it will be fine once they are home, it’s something that’s almost drummed into you everyday by the nurses, but how can it get easier when they say they need to do tests as Ethan’s head is too large for him and that if you as the mother keep feeding him this way he will never walk?
Life after NICU is a whirlwind
I got many NHS letters through my letterbox within the first six months and to be honest I still do, many of them are for routine consultant appointments or heart appointments but when I was told he had to have a brain scan so that was another letter. It never seems enough as they don’t explain why or what. They never explain what would happen at the appointments and they definitely didn’t explain that Ethan would be sedated and that he wouldn’t wake for a feed in twelve hours. The letter led us to believe that we would be in and out within hours and that there wouldn’t be an after night stay. We were told if he didn’t wake up and have a nappy change, a bottle and stay alert then we would have to stay overnight. We went in at 8/9am for his MRI sedated scan and we finally left at around 9pm it was the longest day that we weren’t prepared for.
The Internet is a dangerous game for anyone but especially when you google brain scans, hole in the heart, premature babies as they all come up with items that can scare you, worry you and convince you the worst is going to happen. Facebook isn’t much better to be honest but luckily I have friends who have lived it or are nurses so I had people to ask for advice.
Ethan is extremely lucky in many ways that the hole in his heart has closed and is no longer a concern. We are all hoping he will get discharged at the next heart appointment and as his brain was “normal” size there was no water, swelling or tumours. We are hoping his consultant should discharge or at least mark him as no further issues.
Update – Few Years On
I admit I have bad days and moan about the NHS but don’t we all? Ethan is now 5.5 years and he is happy, healthy, no further issues and is fully discharged from consultant care.
Update – 2022
Ethan is 9.5 years old now and is healthy, with no health conditions and is excelling at school.