Whatever else goes with being a parent to a prem, one thing you do get out of the experience is some new skills and vocabulary. You can add a boost to your CV and sound quite brainy when needing too, by rolling out some swish new medical jargon. Furthermore you can confuse the doctors by beginning to give the impression you are a doctor-in-training and baffle and possibly irritate your GP and Health Visitor as you sit and patiently explain the notion of corrected age for about the fifteenth time in a row.
In my NICU, parents on discharge were automatically trained in infant first aid, primarily resuscitation and CPR and were given a nice long list of warning signs and pamphlets about this that and the other. Coupled with a baby on oxygen (more basic training) and at a year old a brief period of nasogasteric feeding needing further basic medical training, and I can generally hold my own with a set of medical professionals until they get very technical and clever.
The downside of this is sometimes you do go to see a doctor because you actually want guidance and advice.
At just shy of nineteen months old, and having been mercifully healthy for at least six consecutive months, our first port of call is now the GP surgery like the majority of parents, rather than our paediatrician or neonatologist. Up until just after the age of one, it was next to useless going to the doctors or walk in clinics, as upon hearing "premature baby, delivered just under 28 weeks.....pneumonia......cardiac arrest..." the GPs would panic and page the on-call consultant at the hospital before transferring us to the emergency assessment unit. Either that or they would just come out with it that they didn't feel comfortable treating a baby that presented as being in distress, even if that was her version of normal. In all the baby and child literature I have, it always states that any sign of chest recession necessitates a trip to good old A&E. Being a premature baby with chronic lung disease, a bit of recession is pretty standard for Wriggles, although this is slowly decreasing over time. Our neonatal consultant was very helpful is setting us a "new" standard with regards to acceptable levels of chest recession and respiratory rates and gave us a revised list of warning bells. Although we still spent a fair amount of time in hospital waiting rooms and then on wards, we would have practically lived there without this information.
In the last week, Wriggles has been taking delight in turning my hairs grey(er) by having daily chronic coughing episodes. If she had a cough, it would be straightforward: there would be a virus playing havoc, easy peasy. Lots of rest and Mr Tumble prescribed with a touch of calpol and steam ups in the bathroom. However, she is not poorly. These episodes seem more connected to feeding and immediately after feeding; much more reminiscent of when she was younger and had these frequently leading to suspicions of an "unsafe swallow" and recurrent aspiration. We have had a nice long break of over seven months from these type of coughing fits and a video fluoroscopy revealed that her swallow was straightforward with no ongoing concerns from the speech and language team. In the last week, we have had them every day again with periods of increased work breathing and a hacking cough lasting from 20 minutes to 3 hours. 3 hours of a screaming baby in pain from sounding like something is stuck in her throat whilst breathing very rapidly and crackly is no fun. Even if it is 20c and in the park. Generally, finally being able to bring up wind seems to solve the problem, although I do wonder if this is a coincidence as she takes a lot of air in from crying in pain. After the episodes beginning to lengthen and showing no sign of letting up and beginning to reduce her amount of fluid intake, we trundled along to the doctor this morning. Typically, after two and a half hours of a chesty cough at home, whilst in the waiting room Wriggles managed a proud belch and was restored to cheeky glory just as we were called through. The GP was very nice and thorough in checking for signs of infection, virus or obstruction and without any obvious underlying cause, was not too concerned. (I will drop Wriggles off at the surgery next time she has a choke then to see how she likes it....) In fact, she asked what I thought it was a result of and what I thought we should do about it. Not in a sarcastic or patronising way, but as she was stumped for ideas. She was happy for me to self-manage at home and decide on the next steps. Whilst this is a nice notion, I had hoped for advice. I'm glad she was not overly concerned, but with the anniversary of PICU just hours away, the fear of a blip becoming more-than-a-blip is heavy on my mind. I don't have a stethoscope at home. I don't have a sats monitor or any oxygen if needs be. If we did run into trouble like we have in the past, I am not a doctor and there is only so much a mother can do.
I often find this is a problem when we are on the cusp of an illness; when it is worse than being able to rely on calpol but not serious enough for an emergency dash, there is a void left when you have to use your judgement. I find especially due to past experiences, this now can depend on my mood at the time. If I am anxious, I err on the side of caution and try to block out the idea of being a neurotic mother as we are shushed away from hospital (often to be admitted just hours later with acute distress: Wriggles not me). When I am feeling stronger, it is hard to know when enough is enough. Having seen my child in a very serious state on several occasions, the point several steps before that is no longer enough to call in calvary, because I know that that is not The Worst.
I'll give it a few more days and then might go crying to the paediatrician... I don't want to play doctors and nurses anymore.