Consensus

Yesterday, the multidisciplinary doctors had a meeting to discuss where to go from here with Maddy. And they all reached a consensus. Although, the Australian specialist who I previously mentioned in this post is here in Hong Kong this week, and so the doctors want his opinion on Maddy before they formally "decide" where to go from here. 

The doctor who is here from Australia is Professor David Sillence and he is highly respected in the area of Skeletal Dysplasias. He is also the head of the Connective Tissue Dysplasia Clinic at Westmead Children's hospital where we will take Maddy if/when we move back to Australia. Hong Kong has no clinic as specialised as this, since skeletal dysplasias are relatively rare amongst the Chinese population, and so there is no one here with much experience in this area, except for our geneticist who actually trained in Australia under Prof Sillence. Maddy is the first case of Diastrophic Dysplasia ever reported in Hong Kong, or among Chinese people for that matter (although she is only half Chinese). So it is extremely exciting that someone as qualified as Prof Sillence is offering to come and see Maddy and to give his thoughts and opinions on her case. 

Our doctors have been trying to arrange a time with Prof Sillence for him to come and see Maddy, but so far we haven't been able to schedule anything! So we're really hoping and praying that it does work out that he can come because his opinion would be very valuable to us all. I think he leaves Hong Kong on the weekend or so, so we need to try to schedule something before then. 

Anyway - back to the consensus that our doctors have reached (if Prof Sillence doesn't change their opinions), they are happy with how stable Maddy is and are happy for her to come home whenever we are ready (although it will probably take a few days or so to organise the details - and we haven't been "formally" told this yet, just tentatively). Maddy still could have the MRI/bronchoscopy done, but it is up to us whether or not we want her to have that done. And if we DO want it done, we have the option of either keeping her in hospital until after it is done (tentatively scheduled for January 5th), or bringing her home and then taking her back for the test. We also have the option of bringing her home on "home leave" for a few days to see if we are really ready to take care of her at home. 

It goes without saying that I want her home permanently! I feel as though she is just as safe at home as she is in the hospital (well, slightly less since it's more likely that she'd pick up a bug, and we are not equipped to deal with an emergency situation - but she's been stable for so long that I don't think it's a huge risk). I also feel as though we are able to look after her just as well here, although I know that it would take a LOT of work!! Particularly with her feedings. She can still only take small amounts of milk - I found out that the one time that she did manage to take 60mL, it took her an HOUR to drink that much! So most of her feedings will still need to be through the NG tube for a while at least. But I'm up for the challenge!! 

So here's hoping that Prof Sillence can find a time that he is available to come and see Maddy, and also that everything goes well over the next week and that we can bring Maddy home safely some time VERY soon!! 

And here are a few pictures of our princess: (I've been trying to post more pics lately. I know everyone loves a couple of photos!)

Getting her hair washed

And now for the back

Drinking a bottle (rather unsuccessfully this time!!)

Oral Feedings

Maddy is still primarily being fed through the NG tube these days, although the doctors are now being much more aggressive in their approach to training Maddy to take milk orally. It isn't easy for her, when her entire life she's been fed through a tube, and now all of a sudden at nearly four months old, she's expected to actually start swallowing it herself!! 

For the past few weeks though, Maddy has been getting better and better with her oral feedings. Originally she was being syringe fed and could only take a couple of mLs of milk, then more recently they began to give her a regular bottle with a normal teat on it. She has a cleft palate so they tried the Haberman feeder but she wasn't a big fan. She preferred the regular teat and could manage to get up to 60mL that way on occasion, but her regular feeds are 120mL. 

Many times though, Maddy will start sucking on the bottle and will conk out asleep within five minutes. One of the nurses has a theory that since she has had a dummy (pacifier), she is used to associating sucking with sleeping - and she hasn't ever associated sucking with EATING... so she falls asleep VERY easily when she's meant to be having her milk. 

The other day, the nurses wanted to see if hunger could be a motivation for Maddy to drink more - so before the 9am feed, they took out the NG tube and for the 9am, 1pm and 5pm feeds, they ONLY offered the milk in a bottle, not supplementing with any milk through the NG tube. Overall, this experiment was not particularly successful! Maddy drank 40mL at both the 9am and 1pm feeds, and only 50mL at the 5pm feed (so in total, just a little over a third of what she SHOULD be drinking). They then decided to reinsert the NG tube and possibly try again in the next few days. 

It was really sweet though to go into the hospital and see Maddy's face for the first time without any tubes or stickers or anything like that! I had to take a bunch of photos. Here's a few for you to enjoy :)

I'm learning to insert the NG tube in case Maddy isn't on full oral feeds by the time that the doctors say she can come home. I want to learn that now just so it isn't the one thing keeping her in hospital - and while I know it's not that hard, and I'm confident that I could do it correctly and safely at home, I'd prefer Maddy to do better in her oral feedings so I don't need to bother with all that! We have now purchased a Pigeon cleft palate bottle that may help her to be able to drink more efficiently from a bottle, hopefully that works for her. 

Please keep praying for improvement in Maddy's oral feedings, and also for the multidiscipline meeting on Monday, that the doctors will agree that it's in Maddy's best interests for her to come home now!! 

101st post - The News I was Wanting for my 100th Post ;)

Yesterday Maddy had her CT scan. It went really well, apart from her being a bit cranky that the nurses were making her fast a meal. She was sedated for the procedure and so she was really sleepy the entire day after that. When I went to see her in the afternoon, she was conked out like this:

I wasn't expecting to get the results back from the CT scan for another few days to a week - I remember waiting forever last time! But someone must have been working hard because they already had the results back today!!

Overall, the results were quite good. In this CT scan, they focused on the "problem area" around the larynx, and so they got a lot more information this time. It appears to confirm that she does have a bit of laryngomalacia where the cartilage around the larynx area is still quite soft and floppy, collapsing slightly when she breaths in. When she is inhaling, the diameter at this point is around 2.1mm (up from 1.9mm when she was three weeks old) - but when she breaths out, it is 5mm across. This is a very common problem with diastrophic dysplasia and it generally doesn't need any treatment, it will improve with time.

The pediatrician is happy for Maddy to go home as she is - he said she could be home within ONE TO TWO WEEKS!! But the rest of the multidisciplinary team need to agree with that in order for her to go home. This would include the ENT, the pulminologist, the anesthetist and the orthopedic doctors (and maybe others, I can't remember who else is in that team). They will meet on Monday to discuss and we should have a definite answer by Monday afternoon!!!!

Part of me is a bit frustrated by this, because it confirms what my opinion was all along, and also she will most likely not need anything done to "fix" this problem, she will just grow out of it. If I look back retrospectively, Maddy probably could have and should have been home when she was a few weeks old. But I know that there's no changing the past - so I'm just happy that our little girl is strong and healthy and that the end is in sight!! She will be home soon :) :) :)

Maddy is still not taking all of her milk orally yet so she may need to go home with the NG tube still in. I will need to learn how to insert it correctly, how to check that it is in properly, and how to feed her with it. I asked the doctors if they can start teaching me that immediately - because I don't want for that to be the only thing keeping her in hospital. Tomorrow, hopefully they can start to teach me all that... Her oral feedings are getting better and better all the time though - and they are going to try and train her much more aggressively over the next week or two - so hopefully we won't even need to bother with the NG tube at home, but it doesn't hurt to learn just in case :) 

I tell you, when Maddy finally does come home, there will have never been a mother more happy to bring her child home for the first time than me :) :)

100th Post :) - Thankful

I was hoping that my 100th post would coincide with some amazing news like Maddy was coming home, or her CT scan results were fantastic - but we're still waiting for that news, so instead I wanted to reflect a bit on the past year in a spirit of thankfulness, since it's the American holiday of thanksgiving this week. (Australia and Hong Kong don't have Thanksgiving, but I really like the idea behind the holiday! I wish we DID have it!!)

I'm thankful that I have this beautiful child. I'm thankful that we chose to continue with the pregnancy even when we weren't sure if she would survive, and I'm thankful that she isn't just surviving, she is thriving. 

I'm thankful for my beautiful first born, Lana, who keeps us on our toes and keeps a smile on our faces through all the tough days that we've had this year. 

I'm thankful for my husband, who has been my rock throughout this whole year. When I'm having a bad day, he is the one who hears all about it and has helped me through it. He helps me to stay positive and keep things in the right perspective.

I'm thankful that this little one is happy and smiley, with such a sweet temperament that everyone who meets her loves her.

I'm thankful that her oral feeds are going well. She can drink with a normal teat despite her cleft palate, and she can now take as much as 45mL from the bottle - that amount is increasing every day. Before too long, she should be able to get rid of that feeding tube!!

I'm thankful that Maddy is finding her hands and learning how to use them. She sucks her thumb all the time now - and is also starting to touch a lot of other things like her blankets and toys. 

I'm also thankful for all the support that I've had throughout this past year, from friends both here in Hong Kong and also overseas. I'm thankful for the new friends that I have met, the other parents of little people, particularly parents of Diastrophic babies (and kids, and adults!) who know exactly what we are going through. 

And last but definitely not least, I'm thankful to the Lord Jesus for carrying us through this journey. I'm thankful for the encouragement that I've had from the scriptures - that has really helped me to remember that nothing happens without Him knowing about it; and that even when things look bad, He can and will bring good out of them. And I'm thankful that He's already been doing that :)

NICU Socialising

The first two and a half months of Maddy's life, we hardly talked to any of the other parents in NICU. I think maybe partly it was a language barrier thing - I don't speak Cantonese, and at the time, Bernard wasn't speaking Canto at the hospital at all (something he decided to do so that the nurses would speak English to us both instead of only talking to him in Cantonese). Also I'm not the world's most outgoing person so I don't usually initiate conversations with others.

It seemed like after Lana's birthday though, there was an influx of English speaking couples from different places in the world and so for the first time in this whole NICU journey, we've been chatting more with the other parents up there, sharing our stories and even finding common ground. 

I've always felt strongly for the new parents and new bubs up there - so much so that I wrote this post about "The New Kid" just a month ago. And even though we're the NICU veterans up there (107 days now), it still is nice to have that camaraderie with other people going through similar things to us. I hope that it helps them a bit too!!

One of the couples up there had their baby here three months early - they were actually on vacation visiting family here at the time and are now waiting for him to get strong enough for him to go back home.

Another couple moved to Hong Kong two months ago and immediately she began to have complications, so she has been in and out of hospital for the past two months until her son was born two months early - now they are still back and forth from the hospital every day. 

A third couple's twins were only in the NICU for a week or so - they were born not as early as the other bubs, and with less complications. But I loved what the mother said to me (paraphrasing, since I can't remember word for word): "When we first came up to NICU, everything was a bit new and scary, but then we looked over and saw your daughter sitting up in her chair so happy and smiling and it helped us to know that everything was going to be OK".

It's been really good the past three weeks or so, to meet these other parents and hear their stories. I wish them and their little ones all the best through their individual NICU journeys.

Dear Maddy

I love it when I come home from the hospital and my hands still smell like you. It makes me feel closer to you...

Medical Update

We have a date for the CT scan - it's not until November 23rd, so we didn't get lucky with a next day appointment this time around and we have to wait the usual 2-3 weeks. Ah well. I guess that gives us all more time to pray for the scan and for FABULOUS results!! So write it on your prayer lists now ;) 

I'm still hoping that Maddy can be home for Christmas but I'm not sure whether or not we have enough time. Everything takes so much time - time to schedule the tests, then more time to wait for the results, then even more time for the multidisciplinary meeting where all the doctors will discuss the results and where to go from there. Then maybe more tests etc... I still have my fingers (and toes!) crossed but I'm being "cautiously optimistic" about it since I know that there's still a fair chance that she may be in there still at Christmas time. Our hope was to get back to Australia at the end of December or beginning of January, but we're not going to book anything until Maddy is home.

Yesterday, Maddy had another ultrasound on her hips to see how they were developing now that she's wearing the Pavlik harness 24 hours a day. It appears as though the harness is helping to keep her hips in the right position for now, but Maddy will still need to wear the harness 24 hours a day for at least a few more months. 

Maddy's oral training has been continuing slowly, slowly. Previously the occupational therapist was the only one allowed to give Maddy milk orally - but last week I complained to the nurses that it isn't consistent enough for Maddy. The OT can only come at 4:30pm since they work from 9-5,so they can't come for Maddy's 8:30am feed, or for her 12:30pm feed (lunch time) - but often Maddy is too sleepy at 4:30 so the OT wouldn't do the oral feeding at all. Then they don't work on weekends, and Wednesdays they have clinic so it ended up being that Maddy might only have her oral training two to three days a week. After talking with the nurses about the situation, they have now agreed that the nurses can also do the oral feedings at any of her feeds and in the past week she's already improved tremendously! I think that this time last week, her maximum was only about 1.5mL but today she managed to drink 15mL!! If she keeps improving this quickly, she should be on full oral feedings by the time she comes home. (If she isn't able to take full oral feedings when she comes home, she will probably need to have a G-tube, which is a tube directly through the skin into her stomach, and while it's not that bad - it's actually probably safer and easier than the NG tube that goes into her stomach through her nose - I'd rather not have to worry about that if possible!!) Maddy is down to six feedings a day, every four hours around the clock. She takes 120mL each feed so she still has quite a lot of improvement to do before she has full oral feedings, but it's so nice to see that she's now on the way at least :)

I don't think that there is much more medical news for Maddy at the moment. She's still growing, getting fatter all the time. She's always alert and interested in what's going on around her. And I think I already mentioned that she can now suck her thumb - I'm so proud of that achievement! She also has a new bed, a full size cot. She looks so tiny in there - I think they had to get a bigger bed to accommodate all her toys rather than because Maddy was outgrowing the small bed!

So now, we're mostly just waiting for good news from the CT scan on the 23rd. And after that hopefully we'll be able to work towards bringing her home :)

The Pros of Hospital

I spend a lot of time in this blog talking about how much I want Maddy home and how much I'm frustrated with the hospital. My husband would probably say I talk about that TOO much ;) (and maybe I do). But there are definite positives to Maddy being in the hospital, so I thought I'd talk a bit about those things. Sometimes thinking about those things helps me to keep a good attitude about her extended hospital stay, and it helps me to be able to accept things as they are. 

Firstly (and most importantly), as long as Maddy is in hospital, she is very safe. She's definitely "safer" than she would be at home. Her vitals are monitored day and night - and if she were to get sick quickly, the staff would be able to respond much faster and with more skill than I would be able to if she were at home. I think that a serious emergency situation is unlikely, but IF that were to happen, at home she may not survive. In the hospital, if anything were to happen to her, it would be because it was completely unpreventable. 

Secondly, Maddy needs a LOT of therapy. Throughout her childhood, we will likely be having appointments with both occupational therapists and physiotherapists, probably at least weekly. While she's been in hospital, she has been having DAILY appointments with both therapists - and as a result, she is getting much more intensive therapy while she is an inpatient compared to if she was at home. I can already see improvements as well - for a Diastrophic baby, I think she is quite advanced in her motor skills - yesterday she was sucking her thumb!! If you consider how short her arms are, along with the position of her thumbs, that really is quite an achievement. I really think that the therapy has been helping her a lot. 

On a completely selfish point, I have been getting mostly great sleep since Maddy was born. I've been setting my alarm to pump in the middle of the night - but recently stopped doing that. I definitely am getting a lot more rest than if I had a newborn at home to look after! And I think that for new mums, one of the hardest things is the lack of sleep. I still remember those days with Lana and I'm sure that second time around, it's even worse. But with Maddy in hospital, I've been spared from most of that. Maddy apparently sleeps great at night - and when she comes home, I know that it will probably still disrupt our sleep a bit - but no where near as much as if she'd come home earlier.

Bernard and I have been on occasion leaving Lana at home with our helper after she's asleep for the night and having a bit of couple time since Maddy was born. Most of the time, we just walk around our neighbourhood, get a drink, go and watch the Tai Chi, karaoke and Chinese line-dancing down at the ferry pier and laugh at the people who obviously don't know the routine ;) It's nice to have that couple time as well, and I know that if Maddy were home, it would be harder to do that. 

I am looking forward to having Maddy home, but I know that it will be the start of a different journey with her - one that may be even harder than the NICU time in many ways. I know that it will probably be much more demanding of us on a day to day level - we will have the responsibility of all her care, plus we'll need to take her around to all her appointments and balance Lana's needs as well. I know that I'll probably get less sleep then, and less time to relax too. So I am thankful for the benefits of hospital, even though I might not always sound very thankful. :)

Choosing Hope

I recently came across a new blog. Kidz is a blog written by a collection of mothers, all with children with various special needs. It has a lot of great stuff over there and is quickly becoming one of my favourites!!

They posted a quote today that was too perfect NOT to share. It was a Christopher Reeves quote.

When we have hope, we discover powers within ourselves we may have never known - the power to make sacrifices, to endure, to heal and to love. Once we choose hope, everything is possible.

"Hope" is something that has really resonated with me through my pregnancy with Maddy and even now. So much so that it is both her middle name, and part of the title of this blog. There was a time that "hope" was all that we had - we didn't "know" that everything would be ok, we could only hope.

When we go through difficult situations, there are two common responses - we can lose hope (ie, despair) or we can choose hope. Losing hope is like just giving up, but choosing hope gives our journey a purpose,  and it gives us a reason to keep moving forward knowing that things are going to get better, some time, some how. And whatever we're going through, we can always choose hope :) :)

Another CT

Tomorrow is Maddy's three month birthday. For the past two months, she's pretty much just been growing, having some therapy each day and beginning to learn to take milk by the mouth (slowly, slowly...). It was the end of August that she had her CT scan - and since then, there hasn't been any new tests done at all. The doctors were just mainly wanting for Maddy to grow in a safe environment so that they could deal with her problems later when she was bigger and stronger.

The past two months, Maddy has grown a LOT. She has also improved a lot - her stridor (noisy breathing) is almost completely gone (this was her major issue, the reason why she has been in NICU for so long). This could indicate that her airway most probably is not as narrow as the earlier CT scan indicated. She also has pretty good neck control - which can help to stabilise any neck instability (we are still not sure if there even IS any instability in her neck, the MRI will tell us that later on). 

Today, the doctors told us that they are ready to start to reassess Maddy - and the first step is to repeat the CT scan that she had when she was about three weeks old. We're hoping and praying that the CT scan will show that her airway is not as narrow as it seemed when she was younger so that we can then move ahead with the MRI and bronchoscopy and then bring her home. I'm really hoping and praying that she will be able to be home by Christmas. I'm not sure if it is likely - but it is definitely within the realm of "possible" at least...

Please pray that the CT can be scheduled soon - most likely it will be done in two to three weeks. I'd love it to be even earlier, of course. And please also pray that the results of the CT scan will show great improvement. I really believe that Maddy's condition is not as severe as the previous tests indicated and would love for the CT scan to confirm that. I would LOVE for the CT scan to show that Maddy is ready to come home right away without anything needing to be done - but I'm not sure whether the doctors will let her come home without the bronchoscopy, even if the results were fabulous. At the very least, we want for the results to show that her airway is significantly larger, large enough to proceed with the MRI/bronchoscopy.

On one hand, I'm excited that SOMETHING is happening again - after the past two months of pretty much just waiting... but on the other hand, I'm trying not to get my hopes up too much. I want so badly for Maddy to be able to come home and it's been delayed for so long already, I don't know if I could take it if they did this CT scan and then decide they want to do nothing and wait for Maddy to grow for another two months... Of course I'd have to accept it if that were the case - but I just really hope that this time, we're going to start getting some good news and we can start to think about Maddy coming home... I really miss her...

Hong Kong Blogs Review

As a part of my "blogging adventure", I have begun reading a lot of other people's blogs. In my searching for new blogs to read, I came across the Hong Kong Blogs Review. As I was searching for new and exciting blogs to read, I saw that they had a note that you could send them any Hong Kong blogs for them to review and add to their site. In a moment of shameless self-promotion, I sent them my link ;) 

Today I read what they wrote about this blog here:

Life is not perfect. It is unfair; some people are luckier than others. In life, we do the best we can with what is dealt to us; we take the bad with the good. Something challenging happened to the blogger, an Australian living in HK, and her family, to their otherwise almost perfect lives. Despite the life-changing difficulties, the blogger faces the unexpected and unwanted change with acceptance, emotional maturity, and unwavering hope.

Amidst the anguish, this Hong Kong blog, MADELINE HOPE, is about the gift of unconditional love and the indomitable human spirit. The blogger's abiding love for her child shows us that the noblest of love is unconditional. And the blogger's bountiful capacity for giving it inspires us all.

Hong Kong Blogs Review recommends MADELINE HOPE; we are touched.

 Their review brought tears to my eyes. 

So if you're searching for new Hong Kong blogs to read, or if you have your own Hong Kong blog that you want to share, head over to Hong Kong Blogs Review and check it out :)