I'm not that inspiring...

I've been getting a lot of emails and messages from friends and strangers, people I know, people I knew years ago but haven't stayed in touch with. And a lot of people have told me how inspiring we are.

I don't really get that because I don't think we're inspiring at all. I feel tired, worn down, emotional. I have days where I'm used to the whole routine of the NICU thing - but I have days where I just hate our current situation and wish there was something I could do to change things. I'm constantly frustrated at the hospital. If we could somehow go back in time and change things in our past, I would have done just about anything so that Maddy could have been born in Australia rather than here in Hong Kong - but she wasn't and so we're pretty much stuck here and can't do anything about it. 

Today was a pretty bad day for me - I had my 6 week postpartum check up at 11am at the hospital. I know these appointments always take forever and I expected to be there for around 1.5 or 2 hours. So yesterday I arranged with the nurse to go and see Maddy at 1pm and give her a bath. Visiting hours don't start until 3pm but they agreed to let me since I was already going to be at the hospital. As well as the postpartum appointment, today was the day scheduled for the multidisciplinary meeting about whether Maddy would have the MRI tomorrow or not - Bernard and I were "uninvited" from it (the doctor yesterday told us that they only had 30 minutes so they didn't want us there asking too many questions because they needed to be very punctual) - but we were anxious to find out what the next step would be.

Well the postpartum check up was in itself a bit draining - the doctor was talking to me about Maddy and I was explaining my frustration at her being in hospital, pretty much just in case there is an emergency. In other countries, Maddy probably would have been allowed to go home with some in-home nursing, an oxygen tank just in case and an oxygen monitor. I was asking the doctor whether Hong Kong has in-home nursing at all, and pretty much it doesn't provide that option - it is possible to get nurses to come, but it's extremely expensive. So already I know that if we want Maddy to come home, we either need to do all that ourselves (probably needing someone to be with her 24 hours a day in case her O2 stats go down), or we'll need to pay for the in-home support ourselves.

I got to the NICU about ten minutes late (my appointment went later than I expected) and the nurses wouldn't let me in - they said that they were too busy and that they'd already bathed Maddy so I couldn't bath her anyway. Even though I'd already arranged it the previous day, they wouldn't let me in. And the nurse who told me I couldn't come in was the same one who said yesterday that I could! I was so upset that I just walked away in the middle of talking to her. I hate how strict the visiting hours are and how they won't let me see my own daughter if it's not convenient for them!!

I decided that rather than sitting around for two hours at the hospital doing nothing, I might as well go home. I decided instead to go and see Maddy with Bernard after he got off work (it meant going to the hospital twice today, but it was better than sitting by myself in Starbucks for two hours!!) I was expecting the doctors to call and see where we were as I was meant to discuss the results of the meeting with them. I saw one of the doctors this morning and told him I'd be around in the NICU between 1 and 2 and that we could discuss it then. When they didn't call looking for us, I told Bernard "I bet they've cancelled the MRI". 

Sure enough, we get to the hospital and the doctor told us they have cancelled the MRI (the one that took two weeks to book).  Basically, they don't want to risk the bronchoscopy as long as Maddy is stable - they want to leave it as long as possible, and so they don't see the point in doing an MRI now since the orthopedic doctors say that even if they can confirm that the cervical spine is stable enough for the bronchoscopy now, they can't say that it will still be stable in one months time. The irony of it is that if Maddy were not so stable, they would need to take action and do something now - but because she's stable, they are willing and happy to leave it. 

Also when we were at the hospital today, Maddy's oxygen levels weren't so good. They're meant to be above 95% ideally but tonight they dropped down below 80. It's the first time I've seen them so low since she was a week old or so - and they put her on oxygen (which helped her stats go right back to normal again) and ordered another x-ray to check if her lungs were ok. Maybe it's a little reminder that as much as I don't like it, Maddy is better off there than at home at the moment. 

So all in all, it wasn't the greatest day today. I'm so tired of all of this - and the end isn't even in sight. I feel like I'm barely juggling NICU and still being a good mum to Lana. I don't know how I'm going to manage another who knows how many more months of this (although I know that I have to, one way or another)... And I don't know what's so inspiring about all that.