Wednesday, October 13, 2010

A Productive Talk with the Doc

First of all, I have a LOT of updates that I've been wanting to post but I've been really short on time since Lana started preschool three mornings a week. In addition to that, Bernard has Hand Foot and Mouth disease and is working from home this week, so even when I have been at home this week, I haven't been on the computer very much!

About a week ago, I told the head doctor that I wanted to have a talk with him about the long-term plans for Maddy. I often see him when he is doing the rounds but we only really have a couple of minutes to chat as he's busy rushing off somewhere, but yesterday I had the chance to sit down and talk with him for over half an hour. It was probably the most productive chat I've ever had with him, and it's definitely the longest.

The "bad news" is that he expects Maddy to be in NICU for at least another two months (until she is four months old) - that is if everything goes remarkably smoothly from here on. That makes things really tight for getting back to Australia in January but maybe it's not impossible. If we can't make it then, we'll just have to push it back until we can make it.

I really pushed the doctor to explain exactly why Maddy couldn't come home right now since day to day, she is so stable. But he explained that with her airway being only 1.9mm at the smallest point, he couldn't reassure us that a simple virus wouldn't make her condition deteriorate so quickly and severely that she would not be able to survive. He said he has seen other kids with small airways like this and they did let them go home earlier, but they ended up dying even though they seemed very healthy. I guess that even though she is breathing fine, if her airway somehow gets completely blocked, it doesn't matter how healthy her lungs are - no air is going to get to them anyway. One thing he said really stuck with me - he said "Even if she was my own daughter, there's no way I would take her out of the hospital until this issue is resolved".

In talking to other DD parents, I often have questioned why it seemed as though Maddy was so much healthier but had to be in hospital for so much longer. Other kids don't even always have the airway assessment done before they are allowed home. I don't know whether maybe I've been a bit naive about how severe Maddy's condition is (she does seem so healthy) - or maybe their doctors possibly should have been more cautious. But regardless, as I said in this post, I know I need to accept the situation because I cannot change it.

In our conversation though, I also told him about some of my frustrations with the hospital, with the visiting hours and with the way things are done up there in NICU. Often the strictness of it all makes you feel more like a visitor inconveniencing the nurses rather than the parent of the child laying there. He did hear me out though and he said that he's going to see what he can do about helping us have an easier time up there. He told me that until a few months ago (right before Maddy was born), the visiting hours were 8am til 8pm but the nurses just found that it was hindering them from doing their jobs - a lot of them were complaining about it and they ended up having a very high staff turnover because of that issue - so that is why they reduced the visiting hours.

One good thing though is that they are going to start aggressively doing the oral training for Maddy and the doctor hopes that within 3-4 weeks, that she will be fully on oral feedings. It will be after this that they are most probably going to do the MRI and bronchoscopy and then we will know a bit better what will need to be done in order for Maddy to come home. Also with her really starting oral feelings, they allowed me to attempt to breastfeed - so I tried that for the first time yesterday!! Of course after more than two months of being fed through a tube, Maddy had no idea what to do - but at least it gave her a bit of a feel for it. I know that exclusively direct breastfeeding will be a near impossibility but I'm grateful for the chance to at least give it a try. Also that MAY be one way around the rigid visiting hours, for me at least. Breastfeeding mothers are allowed in the NICU 24 hours a day.

In other Maddy news, Maddy now has to wear a Pavlik Harness for her hip dysplasia - her hips are slightly out of joint and this harness will help them to stay in the optimal position and hopefully that will help the problem.

Anyway - I'll leave you with a few pictures of Maddy over the past couple of weeks.

Here you can see her cute little smile - so hard to catch on the camera - but this one gets a bit of it at least ;)

This is Maddy in her new Pavlik Harness - she needs to wear this 24 hours a day for the next couple of months at least.

We tried to get passport photos so that we can process Maddy's Aussie citizenship and passport while she's still in hospital. We're going to attempt to use this one - hopefully it will work!! This is the ONLY time we've ever seen her face without anything stuck on it!! And I wasn't even there that time, I was taking Lana to soccer at the time!!

I've got LOTS more to blog about but I'm going to leave it for another time :)


  1. Hey Nicole,

    You can try to photoshop this passport picture of Maddie to make the correct background color and get rid of the hand, so that your chances of it getting accepted are higher.


  2. Maddy is beautiful. I've just been shown this amazing story, and I'm so touched. I live in Australia, but I have a bit of an idea about how things are done in HK in regards to having babies. I'm so saddened that you and your lovely baby don't get to see enough of each other. I wish the staff would realise that your presence is so important.

    If you want to and if you can, hang in there with breastfeeding - there are many ways to give breastmilk if you cannot do it in the traditional way (I'm sure you know all about it). I read the post about the risk of respiratory infections to Maddy - breastfeeding is one way to reduce the complications of respiratory infections. The Australian Breastfeeding Association can offer support and advice if you need it (there number in Australia is 1800 mum 2 mum or 1800 686 2 686).

    I'm thinking of you, your precious daughter, your husband, your older daughter and your family. God Bless you! Tulani

  3. Hey ,
    I just bumped into your blog accidently and am so pleased I did..
    We will pray for the speedy recovery of the little princess there.

    hang in there..You have been so bold and your family will be proud of you.
    Take care.

  4. Hi there.
    I am a studying level 2 registered nursing student and when I performed a Google image search of "Pavlik harness," (as I, too, was "stuck" in one as an infant for hip dysplasia and dislocation) and I came across the picture of your daughter smiling up at you while in your arms. I had to comment, because she might actually be the most beautiful darling I have ever seen (her image literally made me gasp). I just thought I would let you know. I hope you all are very happy and well :)

    1. Thank you so much! Your comment made my day :)