Why is this still ok?

Today as I was reading Facebook, I came across a picture that bothered me. Maybe it was my hormones raging, maybe it was my oversensitivity, maybe I'm still coming to terms with having a daughter with dwarfism, I don't know. I do know that a year ago, I might have chuckled and not given it a second thought - but today, I thought of my sweet Maddy and instead it made me cry. 

The picture was innocent enough, a teenage boy dressed up as an elf - wearing the typical elf hat, kneeling on the ground so that his knees could be in the shoes, arms not in the sleeves of his jacket - which gave him a pretty accurate "proportion" for the dwarf elf he was trying to represent. So much so that I did a double take, before realising that it was just an average height kid having some fun. 

I know that most people in our society see nothing wrong with the above picture. It's just a bit of Christmas fun. But as the parent of a child with dwarfism, I wonder - how will this society affect my daughter as she grows up? Why is it that it is still ok to stereotype dwarfs and to make fun of them? 

I previously wrote about my thoughts about Hollywood's representation of dwarfism -  and people were quick to tell me that there are now a small number of short statured people who have been cast in non-stereotypical roles, however this still appears to be the exception, not the norm. Most dwarfs in movies these days are still playing the roles of leprechauns, oompa loompas, angry dwarfs who kick people in the shins or some kind of magician's apprentice. They rarely (but still occasionally) play "a normal person who happens to be short statured".

If someone dressed up and acted as though they were affected by a mental disability for Halloween, people would be horrified. If I took out my newborn and had him on fake oxygen just to "dress up", that would not be accepted. Society has made it very clear that it is NOT ok to mock disabilities and special needs.

Except for dwarfs? 

Disclaimer: I know that in posting this, there is a chance that someone who knows the photo I am talking about will read it and recognise what I'm talking about. I know that the picture was taken innocently and was not meant to mock anyone. I am not attacking the photo, I'm just musing about how our society portrays dwarfism - and how people including myself never think about it until they are personally affected by it. I am not personally offended by the picture and mean no offense in anything that I've written. My heart just aches for my daughter who lives in a society where people will most likely laugh at her differences. 

Maddy's New Chair

I mentioned in this post that we were going to rent a medical feeder chair for Maddy to use at home. Well I picked it up on Christmas eve and this is what happened when it got home:

Lovely new chair - I think I might claim it for myself!!

No, Maddy - this is MY chair. What are you doing sitting in it??

There, that's better!!

I love you, my sister xox

Lana is quite taken with the new chair and she sits in there even more than Maddy does! Maddy is happy though that she has somewhere to sit that is a bit more comfy for her - although I think that she wishes it could have dangling toys like her old bouncer! We've tried to be creative with that but it hasn't been very successful so far. Maddy is very interested in her toys these days and is batting at them like crazy, trying to hold them but still figuring out how to work her stiff little fingers. Every now and then she succeeds though :) And I know she's just going to get better and better. Now if we could just figure out how to incorporate that environment with her new chair, that'd be great!! Any suggestions?? (remembering that HK isn't big on hardware/DIY stores!)

Merry Christmas

The girls, ready to start unwrapping

Wow, Maddy - look what you got!

Merry Christmas everyone!!

This year, we had a very relaxed and laid back Christmas. We spent pretty much the whole day at home, ate leftover spaghetti and chicken rice for lunch, the girls didn't get that much this year. But of course, the highlight was having Maddy home with us. For dinner, we went out to eat - Christmas is also Bernard's birthday so it was more of a birthday dinner really. We did have a cake for Daddy and Jesus (they had to share), and Lana spent most of the day eating junk. We had planned to go back home to Australia after Christmas (maybe on the 26th or 27th) but with Maddy being unable to travel, we're just staying home. In spite of not being able to go back home, it has been a good Christmas and it reminded me of what matters the most - not the running around like crazy and giving (and/or receiving) millions of gifts. It's remembering the birth of Jesus and being with the people who mean the most to you :) I hope you all managed to spend Christmas with the ones you love as well! 

I'm so happy for the family of Kody Tobler who managed to spend Christmas with him at home for the first time in his almost three years!  Kody was discharged from the hospital on the 22nd, just in time for Christmas :)

Thinking of Mary

At this time of year, people often do a lot of thinking about the birth of Jesus, about Mary and Joseph, the manger and shepherds and wise men. And a lot of my fellow-bloggers have been doing their share of blogging about their thoughts at this time of the year as well. 

One of my favourite posts that I have read about Christmas is from the blog of Katy at Bird on the Street. Here, she writes "Mary didn’t plan to give birth to the Savior–as far as I can tell, she didn’t even volunteer. She was drafted. Just like me. I was minding my own business when I got selected by fate to be the parent of a special needs child. There’s no handbook for this and figuring out what to do is often a pile of guesswork."

When I first found out that we were facing medical issues in this pregnancy, one scripture that I could identify with strongly was Luke 2:35. A prophet was prophesying all these wonderful things about Jesus, and then he turns to Mary and says "And a sword will pierce your very soul".

I'm sure that when Mary was chosen to be the mother of Jesus, she probably didn't initially realise just how much her heart would be broken, how much pain she would endure seeing the child she birthed treated unfairly and ultimately being killed for crimes that he did not commit. And like Mary, when I found out a little over a year ago that I was expecting another child, I had no idea just how much my world would be turned upside down while I had to learn to face challenges that we never expected. I was still innocent to the depth of pain and heartache that motherhood could and and would bring me in the coming year.

Becoming a mother makes you so vulnerable. I think that any mother can identify at least in part with Mary in the mixture of joy and sorrow that we endure watching our kids grow up. But being a mother of a child with special needs really makes the highs so much higher and the lows so much lower.

Last Christmas when I was enjoying my beautiful, perfect one year old and I had recently found out that we were expecting another little one, when I thought of the Christmas story, I thought about the joy that a new baby brings - and even more so for the baby Jesus, because His birth held sooooo much promise. He was to be Saviour.

This year, I am so much more aware of the painful side of Jesus' birth, that sword that pierced Mary's soul, the sword of a mother's vulnerability. But still, I rejoice. I rejoice at the birth of our Saviour, and at the birth of my own two precious angels too :) I am truly grateful.

Our first outpatient appointment

Today, Maddy had her first outpatient appointment - it was with occupational therapy. From reading other blogs, it seems as though in the US and Australia, occupational therapy and physiotherapy are often offered as home visits (am I wrong about that? Would love to know) - but here in Hong Kong we have to head to the hospital for the appointment.

Today's appointment primarily focused on Maddy's oral motor skills. The therapist had met Maddy once in the NICU - she is based out of a different hospital - and she was amazed at the progress that Maddy has made in the past month! She has gone from struggling to take even 40mL in one hour long feed to being able to easily take 140mL in about 15-20 minutes. The occupational therapist was showing me how Maddy's sucking is improved so much that I can start the feed without even squeezing on the Haberman feeder and just relying on Maddy's sucking ability to get the milk. She can't finish the feed like that because her sucking is still not strong enough - but she can take the first 40mL or so with no assistance which is a great start :)

We will also be seeing the occupational therapist for some developmental training, since Maddy is developmentally delayed in some areas. It is much harder for her to use her hands for one - she will learn how, but a bit of help will make it easier for her. Today though we didn't focus on those areas, only on the feeding. 

I mentioned to the OT that I wanted to try and find a chair that is more suitable for Maddy to be in. I find that the bouncer doesn't seem to have the back support that Maddy needs - she seems pretty uncomfortable in it, arching her back all the time. We have a Bumbo chair and I've put Maddy in it a couple of times when she needs a change of position but I don't think it is ideal for her yet - her back is not quite strong enough yet. When she was in the hospital, they had a "feeder seat" that Maddy seemed to love and I've been wanting to find something similar - something with a bit more back support. The proper medical ones are very expensive though - particularly in Hong Kong, close to USD$1000 apparently - but the OT helped me to fill out a form so that we can borrow one from the hospital for a few months. We should be getting that in the next week or so! 

When we were just about finished our appointment, one of the OTs from the hospital where Maddy was in NICU showed up and it was great seeing a familiar face. It made me kind of miss the hospital - not because I miss NICU, but Maddy had some fantastic nurses and doctors up there and after four months, we developed a bit of a relationship and I miss that. I think Maddy does too, she really loved some of those nurses, and they loved her too :)

As I was leaving the hospital, I ran into someone I knew when I was pregnant with Lana. Her daughter is the same age as Lana (just over two) and has developmental delays, so they have been going to the hospital for about a year for therapy. Her daughter has no diagnosis and the doctors don't know why she has these developmental delays - they are just taking it one step at a time. It made me realise just how lucky we are to have a diagnosis for Maddy. I know generally what to expect, when she might start rolling or sitting or walking, what kinds of things she will, or might not be able to do as she gets older. I can have some kind of an idea in advance what her future might be like. I can also look at other kids and even adults with the same diagnosis as Maddy and know that she has such a bright future. I'm grateful that my questions aren't just answered with further questions. I know that a diagnosis isn't everything, and each case is different, each individual is different... but I'm glad that we do know that, at least.

All in all, it was a pretty productive day. And it wasn't too bad, it didn't take too long and Maddy (and I) handled it great. We have no more appointments until after the Christmas/New Year period but we'll start the year with four appointments by the 10th! THAT will be fun, I'm sure :)

Routine

It's hard to believe that it's been two weeks already since Maddy came home! That time has flown by so quickly! When she first came home, it took a little while to adjust but now we're back into the swing of things :) When Maddy first came home, her oral feedings were not doing so well but now she's feeding like a champion! She drinks her milk so quickly and hungrily and often will cry when she is done. She's drinking more than the doctors recommended that I should feed her - but I think it's a good amount for her. I'm so glad that it's not a struggle any more!

It took me at least a week to figure out Maddy's routine but I think I've got it down pat now. She actually has a very reliable and predictable routine (once I figured it out anyway!). She'll eat, and then play for about an hour or so, then sleep for about an hour or so, and then wake up and want a bit more to eat again. It's a three hour cycle that starts at about 7-8am and goes until her last feed at 10-11pm, then she will sleep like an angel until 7-8am. 

Now that we are in our routine and Maddy is feeding well, things are going VERY smoothly! I always expected that the hard work would start when Maddy came home from hospital, but the opposite is true. It's been so easy! I actually am in awe of how easy things are at the moment (although the first week was VERY hard work!)

It's true that we haven't yet started our doctors appointments - we have six different specialties that we will be seeing in the next two months (occupational therapy, physiotherapy, ENT, cleft palate surgery team, neonatologist, and orthopedic doctor). I know that the appointments will complicate things a bit, but it can't be harder than going to the hospital for a few hours every single day. We have our first appointment (occupational therapy) tomorrow.

I've been loving having Maddy at home and have been showering her with hugs and kisses, blowing raspberries on her delicious baby cheeks and making her giggle non-stop. I think she might currently be one of the most-kissed babies in the world!!

Here's a few pictures of our lives the past week or so :) (I know I probably should break it up so that I have at least one picture with every post, but I can't help sharing them all!!)

Resting on Mummy and Daddy (and 50% of the time Lana)'s bed

Grimacing about "tummy time". Her center of gravity is much higher than an "average height baby" and her arms are so short that it's hard for Maddy to keep her head up. Often her little legs will pop up into the air instead and her face will be smooshed against the floor ;)

There, that way is MUCH better!!

Maddy loves this bunny blanket. She's exploring a lot of things with her hands lately and likes to hold/stroke things with interesting textures like her blankets and towels. This one is a favourite!

Maddy's first introduction to Playstation. She seemed fascinated ;)

There were three in the bed and the little one said...

Travelling

As expats living away from "home" in a foreign country (albeit the one where my husband was born), we generally do a lot of travel. In the first year that we were living in Hong Kong, I went back to Australia twice. In Lana's first fourteen months, she went to Australia three times, and Singapore, Malaysia and Thailand all once. That's more travel than a lot of people do in a lifetime!

The last time that we were overseas was last Christmas. We went to Malaysia and Singapore to visit Bernard's family over there. We had just found out that we were pregnant with Maddy at the time but we had no idea what the year would have in store for us!

We had been planning to go back to the US for a long time and were nearly at the stage of booking tickets for Easter this year when we found out that we had complications in the pregnancy. We decided to cancel the holiday and possibly head back to Australia later in the pregnancy - but the doctors recommended that I shouldn't travel at the time. 

Instead we were planning on heading back in October after Maddy was born, for Lana's second birthday. NICU changed that plan for us, but we didn't mind postponing until Christmas. We knew that Maddy should be out by then - and in some ways that was a better plan since my brother would also be in Australia from Denmark - plus it's SUMMER (and I love the Australian Summer!).

Last week I asked the doctor, just to be sure, whether Maddy was fit to go in a plane - and the short answer was "no". With her airway issues, the doctors cannot guarantee that she would be strong enough for the flight - although the cabin is pressurised, the pressure is still lower than atmospheric pressure. And the oxygen content is lower as well - closer to 17% than the usual 21%. Most people can fly and these conditions don't have any impact on them, but people who have respiratory problems can really suffer in those conditions. And the last thing that you want at 30,000 feet is a medical emergency. 

So we're currently "stuck" in Hong Kong. Bernard has nine weeks of annual leave owing since we were saving them up for the US trip that was meant to be at Easter, then for this trip back to Australia. We haven't had a break at all for a year, and we really need one! There's not many options for "staycations" within Hong Kong around here - we could head to Macau, or we could head into China - but I wouldn't want a medical emergency in China either!! At least Macau isn't as far away.

Hopefully Maddy will progress to the point that she is able to fly in the not too distant future - the doctors said it will be at least a few more months though (so no Australian summer for us :( ). Maybe we can make it back to Australia for my 30th in May instead...

Discharged :)

On Friday, we went up to the hospital for an ultrasound on Maddy's hips. Friday morning was the end of our home leave, and so I needed to leave Maddy at the hospital for the whole day until we had a meeting in the afternoon with a few of the specialists.

The meeting with the specialists just turned out to be some kind of disclaimer from the doctors. "Usually we would insist on doing a bronchoscopy when a child has symptoms of airway malacia or narrowing of the airways like Maddy does, but we are not doing that because of these reasons, but you need to be aware that really her airway hasn't been properly assessed". I'm aware of that, but I'm also aware that the CT scan did suggest that she has the laryngomalacia, and this is consistent with diastrophic dysplasia. Even if we were to do the bronchoscopy, in the words of Prof Sillence, there's a 99% chance that we'll just confirm that she has laryngomalacia due to the DD - something that we can assume from what we already know about her symptoms, the CT results and DD in general. There is nothing that we can do to treat it, it is something that she will grow out of in time. 

After waiting around at the hospital until 5:45pm for that meeting, we were free to officially begin to be discharged. That involved a lot of appointment making by the nurses (I think we already have six follow up appointments with various specialties), bill paying, vitamin ordering (although we forgot and left them up at the hospital) and just waiting around for various bits and pieces. We ended up getting home at 8pm after all that! But now that we're home, we're home for good :) No more trips up to the hospital for a while! (unless we decide that we want those vitamins after all ;) )

We received good news from the ultrasound - the Pavlik harness that Maddy's been wearing for the past two months has been doing it's job and Maddy's hips are no longer dislocated. This means that Maddy no longer needs to wear the harness, and she's been LOVING her new-found freedom. In the harness, she could only slightly wiggle her legs, but not really kick them around at all. Now she is kicking them non-stop.

I've been playing around a bit with Maddy's feeds since I didn't really feel as though the hospital routine was working for her. Last week, there were times that we really had to force feed her when she was crying and thrashing her head about, obviously not wanting any more and it was VERY painful for us all. The hospital wanted me to feed her six 100mL feeds a day, and sometimes it was a struggle to even get her to take 50mL. But we knew that if we couldn't get an average of about 600mL, she may need the NG tube put back in, and none of us want that. After a bit of experimenting, we are now feeding her eight feeds a day, averaging about 75mL. If she is hungry and eating well, I'll give her the full 120mL but if she is cranky and not wanting any more after 50mL, I'll stop the feed right there rather than forcing her to drink more. With this new routine, she's actually drinking more than before, and it's a lot easier too! (although there is more bottle washing involved). I know that as she gets better at feeding, she will probably drink greater quantities less frequently, but for now, this is working for us, and we're all happier as a result. 

And would you believe it, since she's been home I've been so busy that I've hardly taken any photos? I need to get around to that ;) Hopefully next time I'll have a bunch of new pictures for you all :)

Adjusting

It's been two days since Maddy has been home and we're all still getting used to it a bit. Lana has been really good with Maddy, but she's been a little bit extra needy with Bernard and I. The night that Maddy got home was pretty awful - Lana woke up around 11pm and didn't go back to sleep (in our bed) until 2am. Much of that time, she was screaming and keeping us all awake - but Maddy slept right through it! The next night, she didn't want to go to her bed at all, she wanted to sleep in our room. We made her go to her own bed, but when I was feeding Maddy at 5am she woke up and made her way into our bed.

Maddy has been mostly pretty good but she's been a bit unsettled and has been crying for no reason (either that or I just can't figure out what the reason is, no matter how much I try different things!!). I'm sure that coming home has been a massive upheaval for her, she has lived all her life in one room, mostly in one bed, and now she's in a strange place, going outside, feeling the wind and the sun, smelling the fresh (or not so fresh) air... all wonderful things, but I'm sure it could be pretty frightening for such a little one.

Bernard has been working from home these last couple of days. It's nice having him around to give me a hand if things with the two girls start spiraling down fast! But he is still so busy with work - he wasn't able to get "time off" because there is too much going on, so he is still working full days but just at home instead of at the office.

Looking after Maddy is a full time job! The hardest thing in looking after her is feeding her- it makes me grateful for just how easy Lana was! With Lana, I always just breastfed on demand, and with her I could rely on her to know when she was hungry and when she was full. With Maddy, if I fed her on demand, she'd need to go back to the hospital with an NG tube because simply, she wouldn't be getting enough to even stay hydrated. 

Instead, I need to feed her mostly by squirting milk into her mouth and waiting for her to swallow it. The first part of her feeds, she will take more actively, so it's not so much work - but after she's decided she doesn't want to work for her food any more, that's when the fun and games start! It's often a long, slow process of just trying to make sure she can at least MOSTLY finish her feed before she's too traumatised to have any more. And it's a fine line before trying to get the food into her quickly, or trying to make sure I don't overdo it and make her cranky faster. Each feed takes us about an hour until either she has finished the feed, or more regularly, she has decided that enough really is enough!

Putting it into perspective though, I think it's just been a week today that her NG tube was removed permanently, so she's only had one week to practice and learn how to fully take oral feeds. I'm sure that it will get better with time, and truth be told, it already has been improving (slowly though!!)

We've been mostly staying at home but I did take her to our family doctor to get her four month immunisations, and I did need to run out to get a couple of things at Times Square (that webpage has the coolest intro!! Check it out!!) so I took Maddy along for the experience too. It was great to go out with her, not so great to feed her while we were out instead of in the comfort of our own home! I'm sure I probably "broke probation" since we're still on home leave rather than formally discharged, but I don't think that any of the nurses saw me! ;) 

Despite how hectic it has been, it's soooo good to have Maddy at home with us all and to not have to go up to the hospital! Our "home leave" was extended until Friday so we will go back up there then for the day and if everything goes smoothly, Maddy will be formally discharged then. She will also have a follow up ultrasound on her hips to see how the harness is working, I have an appointment with someone in order to get a disability allowance for Maddy, and we have another appointment with all the multidisciplinary doctors to discuss how we need to look after her at home and what things we will need to follow up when.

I'm looking forward to when we're all a bit more settled into our new routine and can all relax a bit more! I know it won't take long :)

Home Sweet Home :)

Right now, I'm sitting here after a long, wonderful day listening to my youngest daughter sleeping away next to me. I'm looking forward to having her disturb my sleep (hopefully not TOO much) tonight. And I'm thankful that she is home and that we can begin our lives together as a family of four :) 

Lana has been so great with her this afternoon since we got home. She has been talking to her non stop. "Baby Maddy, would you like to play with the bunny rabbit?" "I like your elephant and giraffe, Baby Maddy" "Baby Maddy, go and sit with Daddy now. I want to sit with Mummy". Lana was so gentle and loving towards her. I hope it continues that way!

It's been pretty intense so far having her home. Maddy is completely orally fed now, but it takes a LONG time and a LOT of effort. It makes me appreciate how easy it is when breastfeeding works like it should!! Instead, I need to pump first, then sterilise, then make up bottles (she is now doing best with the Haberman feeder), then it takes an hour for her to take about 100mL, seven times a day. One hour to feed, then two hours break before we need to feed her again. She gets so tired from sucking and swallowing, she's used to being fed the easy way! But I know she's getting better every day and it won't be THIS hard for that long.

Technically Maddy is only on "home leave" at the moment, we need to take her back to the hospital on Wednesday morning but if all goes well until then, she will be formally discharged on Wednesday. 

I'm sure it will take us a few days at least to begin to get into some kind of routine with her. Tonight was a bit of a disaster really (well we DID get home at "horror hour" and I needed to wash and sterilise bottles and the pump parts, then I had to pump and bottle feed Maddy, and feed Lana and ourselves all within two hours. We had the two girls screaming in harmony!) but we can play around a bit with Maddy's feeding times to find something that works better with Lana's routine as well. 

So now, I'm looking forward to NOT going to the hospital tomorrow!!! Hurray!!!

Welcome home, Maddy :) :)

Sillence in the Hospital

So I couldn't resist the pun ;) (although technically, his name is pronounced "si-LENCE" with the emphasis on the second syllable)

Yesterday, Prof Sillence made his way up to the hospital to see Maddy. It was really good to have someone look at her and look at the x-rays and to give his opinion on her case. And he's had a lot more experience in this condition so the doctors were really wanting to hear what he had to say as well. 

It was all pretty good news. Prof Sillence said that he sees no evidence of any neck instability on her x-rays. That has always been something which was mentioned and not ever really confirmed or denied. I think it was something that the original geneticist (who trained with Prof Sillence) mentioned. In addition, there is no evidence of a cervical kyphosis at all - and this is often the major complication with Diastrophic Dysplasia. A kyphosis is where the neck bends at the wrong angle putting pressure onto the spinal cord and it often needs to be corrected with spinal fusion which is a pretty intense operation to have! Prof Sillence said that with DD, if there is no evidence of kyphosis at birth, it's very unlikely that one will develop later -  so I'm very glad that we don't need to worry so much about that!!

In addition, Prof Sillence suggested against the MRI and bronchoscopy. He said that the neck manipulation that they were planning could damage her neck and they wouldn't gain any information that they don't already have from the CT scan and from what they know about Diastrophic Dysplasia in general. So that is now not going to occur. They will monitor her closely though and if it happens that she does need them later, we can reconsider. But for now, absolutely nothing needs to be done!!

So in light of all that, the hospital is now preparing Maddy to come home! The process still will take a few days as we need to make appointments to talk with various doctors about her airway issues and her orthopedic issues and how to manage everything at home - plus it's coming up to the weekend so all the 9-5 doctors will be off! But she should be home by around Tuesday, give or take a day or two!! 

(forgive all my exclamation marks in this post, I'm just REALLY EXCITED THAT MY BABY IS FINALLY COMING HOME!!!!!!!!!!)

Kody Tobler

I recently got back in touch with my childhood next door neighbour through Facebook. She was a grade or two below me at school and we used to play at each others houses pretty frequently, back when our parents would send us to each others places for a cup of sugar. I remember Mum telling me a couple of years ago that her son, Kody, was born with some health complications but at the time, I didn't really think much more about it and I never asked after them. 

 

I've been reading about Kody on his blog and his Facebook support page over the past couple of days (and there are a few newspaper articles about him if you google him too).  Kody is going on three years old and he has lived his entire life in the hospital. He was born with part of his bowel outside of his body and due to the damage, it needed to be removed leaving him with short bowel syndrome.

One of the newpaper articles written about Kody brought tears to my eyes. It started:

In Kody Tobler’s Warilla bedroom the toys are gathering dust and the crib has never been slept in. The quiet, empty room is not an easy sight for parents Kristy and Justin to bear, but they can’t complain. 

Theirs is a miracle baby.

I know now what it is like to have an empty bed in the house - Maddy's bed has become a storage place for guest pillows and blankets, and I recently went through her wardrobe, taking out unworn newborn sized clothes that I bought for her that she will never wear since she is now too big. And sometimes it seems like these four months have been so hard. But compared to Kody's family, we are SO blessed that it's only been four months and Maddy will be home soon.

Kody still faces tremendous health issues on a daily basis and needs a bowel and liver transplant - however this operation is not performed in New South Wales, so what he really needs is a miracle. His internal organs are already deteriorating.

Kody's family would love to bring him home, however the financial cost of having him at home would be enormous. The family have fundraiser sausage sizzles once a month near Lake Illawarra foreshore in my hometown of Wollongong, Australia so that they can afford to bring him home. If you are near there, please look up Kody's Facebook support page and see if you can go along to one of them. 

If there is any way that you can help to support this family, either financially or through your prayers, you can follow them on Facebook. This boy should be with his family.

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 :)

Maddy's Story

I've added a new page to this blog - Maddy's Story. It is a short summary of the past year - our pregnancy with Maddy, her birth and her current medical situation.

Enjoy!!

Exclusive Pumping

When Lana was born, I knew I wanted to breastfeed. I know that breastmilk is the best for the little ones - and while I'm not a "fanatic" about breastfeeding like some people I've met, I did want to give it as much effort as possible. I managed to have a very successful breastfeeding relationship with Lana, feeding her exclusively until she was about 15 months. She self weaned when I was about 3 months pregnant with Maddy. 

I always hoped during my pregnancy with Maddy that I would be able to breastfeed her as well. I was really hoping that she wouldn't have the cleft palate that many diastrophic babies have so that I would be able to feed her directly - but with her cleft palate along with the breathing issues that she's had, it will be unlikely that she will ever be able to directly breastfeed.

I have been pumping for Maddy since the day she was born - I figured that with her health complications, she had even greater benefit from having breastmilk rather than formula. Another benefit that I've just come to realise later is that it helps her to recognise me. Babies have a strong sense of smell and I'm sure that Maddy can identify me from the smell of the milk. Often when I'm holding her, she will turn her head in a similar way that breastfed babies do when they are wanting to be fed. I know she can smell the milk.

The doctors now allow me to put Maddy to the breast, and sometimes she seems interested and she seems as though she enjoys it - although she cannot latch on or get any great quantity of milk, only what I manually express for her. It's more for the experience than for an actual feed. 

I've been wanting to write a post for a while about my "exclusive pumping" experience for a while in the hopes that it may help someone else who wants/needs to exclusively pump for their little one. There are many reasons why someone would exclusively pump. Sometimes the baby is sick or premature and cannot be breastfed directly. Other times, a baby may have a cleft lip/palate that makes it difficult for them to latch and they will need to be bottlefed with a special teat. Other times, completely healthy babies cannot or will not latch for reasons unknown which can make breastfeeding difficult or impossible. Sometimes a baby can be a "lazy feeder" who does not get enough milk from breastfeeding and needs to be bottle fed (at least in part) since they are not gaining enough weight. And last of all, some women these days choose to pump for personal reasons - maybe they like the flexibility of having someone else being able to feed the baby, maybe they are returning to work, or maybe they have other reasons for not wanting to breastfeed.

When Maddy was two days old, I called a La Leche League leader here in Hong Kong and it was the best thing that I could have done in order to set myself up for long-term exclusive pumping. The main recommendations that she had were:

• Pump no less than eight times a day for the first six weeks (elsewhere I've heard twelve weeks)
• Pump until the breast is empty, and then another 5 minutes or so afterward in order to stimulate more milk production
• Don't go for more than 5 hours between pumping sessions, including at night

At first, it was really hard work. I was pumping at 4:30am, 8:30am, 11am, 2pm, 5pm, 8pm, 10:30pm and midnight. During the first couple of weeks, each pumping session only yielded very small amounts - but the total amount was increasing each day. 

One thing that I am now thankful for is that I followed this strict regime for the first few weeks and that I always produced more than what Maddy needed because now, my milk supply is well established and I am not worried about not having enough milk for her. The hard work in the beginning really has paid off. 

When Maddy was about 4 weeks old, my supply was great and so I again talked with the LLL leader about dropping a pumping session. She said that most probably, I could afford to drop a pumping session or even two, but to drop one at a time and wait a week to see what the effect on my supply was. I went down to 7 times a day and my supply was still increasing. Then down to 6 a day and my supply was still increasing. I stayed at 6 pumps a day from around the time that Maddy was a bit over a month old until about two weeks ago and then dropped down to five. My supply seems to be unaffected by dropping that extra pumping session. I am still pumping over double what Maddy eats in a day. I'm happy to know that I could probably even in a month or so go down to four pumps a day and still be able to meet her needs long-term.

These days, I pump around 6:30am (only for 10 minutes to get me through the night), then again at 9am, 2pm, 6pm and 11pm. I found that for a "night pump", waking at 6-6:30am helps me to get the maximum amount of sleep. At that time, I'm not as tired as I was at 4:30 so it's not as painful to get up, but it's not too late for me to fall back asleep afterwards. I've pumped at 7-7:30am before but prefer to pump earlier since at that time, it's harder to get back to sleep. My next goal is to be able to drop the 6:30am pump altogether so that I can sleep completely through the night.

One of the best things that I have done is to print myself out a little "pumping diary" in which I write the date, the time and the amount that I pump. I have written the volume of every pumping session since Maddy was two days old in there. And while it really helps me to know where I am at, I am cautious not to freak out when there are variations from day to day. I have pumped for long enough to know that if on Monday, I get a lower than average volume, then most likely on Tuesday I will make up for it. Or vice versa. Instead  of making a big deal about the daily amounts, I think about the average of the past few days or the past week. I don't want to stress out unnecessarily. 

With pumping, I have found it difficult to go out for long periods of time since I usually need to pump during that time. Knowing that I have more milk than I need, however, allows me to go out with my hand pump and "pump and dump" while I'm out (ie, pump, measure the volume but then pour it down the sink). It's a shame to pump and dump, but I'm thankful that I have the oversupply that means that I have that option!! And since Hong Kong has no milk-bank, I am constantly dumping 50% of what I'm pumping. But I'd rather do that than to worry about whether I'll be able to have enough milk when Maddy is six months old and eating more.

Two of the things that I consider to be NECESSITIES for someone who is exclusively pumping are:

1. A good, double electric pump. I have the Medela Pump in Style advanced. It is one of the most popular models for exclusive pumping and I highly recommend it! I hate having to pump when I'm out because then I need to use my Medela Harmony hand pump instead and while I think it's a great hand pump, it gets tiring pumping by hand, and it takes twice as long since you have to pump one side at a time.
2. A hands-free pumping bra. Some exclusive pumpers will just take an old bra and cut holes in the front but I bought the Simple Wishes pumping bra. While it's an ugly thing and I would never wear it except for when I was actually pumping, it does a fantastic job of holding the bottles in the correct position and freeing the hands so that I can use pumping time to read or play Bejeweled on my iPod ;) I also find that when I am out and need to pump without it, I end up getting sore because there is a lot more rubbing from the pump. This is especially true when pumping by hand, but it is also occurs when using a double electric without the pumping bra. 

Long term, I would like to continue to pump for Maddy for as long as I possibly can since I know that it is the best (and cheapest!) food that I can give her. Now that I am pumping less frequently, it will be a lot more manageable when she comes home and I have to care for her and for Lana as well.  I'm sure that I will drop to four pumping sessions a day before she comes home, purely to free up a bit more time (each time I've dropped a pumping session, it is SO liberating!!). I don't know exactly how long I will pump for her, but ideally I'd like to make it to a year so I don't have to supplement with formula.

There is quite a bit of support online for people who exclusively pump. The two best resources that I've found are the Exclusive Pumpers Yahoo group (note, this group is only for people who are exclusively pumping because they need to rather than because they chose to) and the iVillage Exclusively Pumping forum.