Tuesday, September 14, 2010

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.


  1. Hi Nicole,

    I haven't commented before but have been reading your blog since before Maddy was born. My son Connor has achondroplasia and is now 4 and a half years old. I live in Canada where healthcare is free which seems to make life a bit easier. Parents can see there child in the NICU at any time day or night. I can feel your pain and frustration in your writing and I wanted to let you know that I am thinking of you and how terrible it must be to be in this situation. The fact that she is the only case of DD in Hong Kong makes it hard to battle the doctors over her care and I think that you are right in thinking Maddy would be home already if you lived anywhere else. Keep fighting to bring your daughter home. Keep fighting those doctors in general. They originally told me my son would die at birth...they were wrong. Maybe contact LPA and see if there could possible be a specialist willing to contact the doctors in HK.
    Keep hold of that little girl of yours...she is a special gift. Just keep giving her cuddles and loves when you can.

    Marla Ryan

  2. Hey Nik =) I think your situation is the very definition of the phrase "You don't know how strong you are until strong is the only option you have" Many people see you as an inspiration because they can't imagine themselves walking your path. They don't realize that often it's just putting one foot in front of the other. I'm sorry that you are having to walk this road and keep Maddy at the hospital while being a good mom to Lana as well. God will give you strength minute by minute to continue. Love you guys.

  3. My situation is totally different from yours, but I get having to hold on, not knowing how much longer things will take to improve. I too get people telling me that I'm an inspiration and a testimony, but then I look at myself and my frustration and my weakness and I don't see what they see.

    And that's how it usually is. People often see us better, and sometimes more accurately, than we see ourselves. You don't see your strength, but I and others do.


  4. Wish we could all come over to Hong Kong and be there for you and Bernie!! Moronic hospital system! Don't they realise they are dealing with people and not robots.. Praying that you feel the peace and love of God in every situation on this roller-coaster journey! xx

  5. Wow, the system in Hong Kong is very very different from the US. I practically lived in the NICU with her. I agree with Marla, keep fighting the doctors to bring your daughter home! Contacting LPA is a great idea too! Without them we may have never found the right doctors for our daughter. One day at a time you will all get through this even when it feels like it's taking sooo long! Hugs to you!!! Oh and P.S. I love the latest photos of your beautiful Maddy!

  6. Oh, I remember the days all too well. We were in the NICU for 99 days with our son. You are strong, and you will continue to be strong for your daughter because you have no other choice. But, when you are out of the NICU, you will wonder how you ever did it and then you will realize how strong you really were and inspiring to others.

    I am so sorry you have to deal with "visiting" hours at the NICU in Hong Kong. I have never heard of parents having to abide by visiting hours in the NICU. At our NICU we could stay in the room with our son all day and all night if we wanted to. There were even parent quarters in the room with a pull-out bed. This must be so hard on you. It is ridiculous that you can't see your daughter whenever you want, especially now that she is so stable. I just hope that she will get to go home soon so that you can be with her every second of the day.

    Keeping you in my thoughts and prayers.

  7. Hi guys, I've been following this blog pretty much since the beginning. You say you aren't in inspiration, but I disagree. You and your families have displayed courage and determination that I can only hope to emulate.

    Regarding the family-unfriendly policies of the HK HA, perhaps you could write directly to its Chief Executive, Shane Solomon. He's an Aussie who might understand how restrictive the system is in HK compared to more "liberal" (read more sensible) hospital systems elsewhere. If he understands what you're going through then he may be able to do something about it.

    I know when Douglas was born at Princess Margaret, I found it infuriating that I was excluded from the birth and could only see him and his mother for an hour a day. That only lasted 3 days so it in no way compares to what you've gone through, but it does give me an idea of the frustration the unnecessarily harsh policies of the HA imposes on new parents.

    I hope these comments help. In the meantime our thoughts and prayers for you and your loved ones will continue to flow from here in sunny Australia.

    Damian Greenwood