Last week we had another consultation with the paediatric hernia surgeon. As you may remember, we had seen them in July and the consultant had said that because the hernia was not present that day and because I hadn’t taken any photos to show that we would have to review in a few months.
So over the last 4 months I had taken a picture each time I saw the hernia. Which is actually only twice. I had two pictures. It was this that had maybe led me to think that maybe they would let him off for another 4 month review rather than put him through a surgery for something that’s never there.
Unfortunately, it was a different guy this time. The last time it was a lady who coincidently was also a premmie mum who understood why I was panicking and didn’t think he was ready to be re-ventilated for an operation so soon after coming off breathing assistance. This guy disn’t really understand our journey or my worries. He said that Jack has a fluid hernia which is why it comes and goes but that it’s really worth fixing before it becomes an emergency. I understand that. I don’t want it to become an issue. But he really really didn’t understand my concerns about the actual procedure and how they would put him under/whether they would ventilate etc. I felt like he was insinuating that I was overreacting and why on earth am I worried?
This was extremely upsetting. Why am I worried? My boy needed assistance breathing for the first 7.5 MONTHS of his life. That’s longer that he’s been without it. You want to put my son, the reason the earth turns, to sleep and it could be on ventilation. What if he has a bad reaction to this because we had overestimated how ready he is? What if he crashes on the table? What if you can’t get him back off oxygen afterwards and we need to spend several more months weaning him off again? This may be just another easy day of a procedure he does all the time to this surgeon, but to me this is MAJOR.
Jack has been added to the waiting list and so when we get a pre-op appt through I will be going over this again with them. I need to make sure the surgeon is treating this as seriously as me.
If anyone has been through this, I’d really appreciate some words of comfort and to hear your positive experiences. Did your ex-oxygen babies come home in air only the same day as they’re telling me Jack will?
I have been trying for months to get past the guilt of Jack’s premature birth, caused by my body’s grave error. This has admittedly set me back a lot. Jack’s hernia is a direct result of being born premature. He has to have this surgery because I couldn’t keep him safely inside my belly.
Prematurity doesn’t end at discharge. It goes way beyond the NICU. And that’s why I still blog about it and tell people about our still-continuing journey. “Look at him now, he’s fine” people say. If only that were the case, I think.