Saturday, July 30, 2011

One Year of Pumping

Next to questions about Maddy's medical condition, one of the most common questions that I get asked is about pumping. If you don't want to read all the details, feel free to stop reading right here as the rest of this post will be only about pumping and nothing else.

I have written previously about my pumping experience here. At the time, it was still early days (just shy of three months) but the early days are the hardest!!

To summarise from the earlier post, in the first month of pumping (some will say the first three months, but really it's until supply is established), it is important to pump at least eight times a day, at least five minutes after the breast is empty, and with no more than five hours between any two pumps.

For me, my supply was well established by a month, and at one month, I dropped down to seven pumps a day, but still keeping that one middle of the night pump. I was pumping 1400mL a day.

My supply continued to increase and so after another two weeks, I dropped down to six times a day, pumping 1500mL a day, which increased to about 1600mL a day by the time Maddy was two months old. 

At that time, I dropped down to five pumps a day, and kind of dropped the middle of the night pump at last! I was still pumping at 11pm and then 6:30am, usually dropping back off after pumping in the morning. That early morning feed got pushed later and later until it was at 8am and I was finally sleeping through the night again! Maddy was still in the hospital at that time. 

When Maddy was around three months old, I went down to pumping four times a day. I would pump around breakfast, lunch, dinner and right before bed. I was still getting around the 1600mL of milk a day all this time. 

When Maddy came home, the busyness of needing to look after her made me go to pumping three times a day. This was the first time that I noticed a drop in volume. I pumped three times a day for a LONG time, from the ages of around 4 months til 8 months old - and my supply slowly dropped from about 1500mL to 1200mL. This was still plenty to feed Maddy though. At her peak, she was only drinking 800mL a day, and when she started solids, this decreased substantially. 

At about eight months, just before our trip to Australia, I decided to go down to just twice a day - further reducing my supply. At the time, Maddy was only drinking about 600mL and my supply was around 7-800mL. Still more than enough, but with a much smaller excess. That said, I think I could have maintained pumping twice a day and met her needs at least for quite a few more months. 

My initial plan was to pump for a year and then to transition Maddy onto cows milk, bypassing formula altogether. However, Maddy's dairy allergy put a spanner in the works there! I wanted to make sure that we had a good milk alternative that Maddy would actually drink before I stopped pumping, and the thing that works best for her at the moment is soy. Maddy is also allergic to goats milk, so that is not an option for her. 

Knowing that we had a good alternative, I was confident to begin pumping just once a day. The transition from twice to once a day was the most difficult - instead of just dropping a pump, I had to reduce the time that I was pumping slowly in order to actively decrease my milk supply without having all kinds of engorgement issues! I managed to make a fairly painless transition by the time Maddy was around 11 months old. 

I was surprised with how quickly my supply dropped with just pumping once a day! Within a week, it had halved to a little under 400mL. Maddy drinks about 400mL a day, but so that she will be able to have breastmilk for longer, I have been giving her one bottle of soy milk and one bottle of breast milk a day, freezing the excess.

In anticipation of her first birthday, I was also been actively pumping less and less each day. Initially, I was pumping for about 40 minutes in order to pump til empty, but then I reduced right down to just 15 minutes, yielding only 150mL. And then, I planned to see what would happen if I skipped one night. I thought I would need to pump in the morning due to engorgement, but I wasn't uncomfortable - so I put it off until night time. I still wasn't uncomfortable, so I figured I might as well "hang up the horns", so they say. 

So I didn't QUITE make it to one year, but I have to say that all in all, I did a pretty awesome job (pat myself on the back). Pumping was not always easy, and I have had to make sacrifices to do it - but I do know that it has had health benefits for Maddy, and financial benefits for us!!

My advice to anyone wanting to pump would be - just try it and see how you go. For some people it is easier than for others. I didn't find it unbearable, although it is definitely a sacrifice. Also I think it is good to keep a track of when you pump, how many times a day you pump and the volume you get as well. It helps you to know where you are, and for me it was those numbers that helped me to decide whether to risk dropping a pump. For me, it probably made it easier in some ways that those early days, I didn't need to look after a newborn. By the time that Maddy came home from hospital at four months old, my supply was well and truly established and I was in a routine that I could work around.

I also found, I had gastro twice during that year and both times, my supply really took a HUGE hit. It was scary the first time it happened, within a day, my supply was down 40%. But when I recovered, so did my milk supply. The second time I had gastro and my supply also took a hard hit, I didn't fret so much because I knew that it would bounce back, and it did. 

So, there's my pumping "journey"... and now, for the first time in 3.5 years, I'm not either pregnant or breastfeeding (or both)! It's kind of weird, but good :) There is the odd tinge of guilt - I could have kept going for longer, and I know I COULD have... but I also know that at this age, the benefits for Maddy are smaller, and for me, it's no longer worth the hassle. I'm sure Maddy will thrive regardless :)

Thursday, July 28, 2011

One year ago...

A year ago today was my due date.

My mum was here in Hong Kong waiting for baby Maddy to come. 

I just went back and read some of my old posts to remember those days of waiting... going a week overdue,  being induced, hoping for Maddy to be healthy and that we wouldn't have any unpleasant surprises when she was born.

We had prepared ourselves for her to be different. I knew that she would be spending at least a day or two in the NICU and that I may be leaving the hospital before her. I had no idea whatsoever that she may be there for four months though!

In this whole journey, for me, the pregnancy was probably the most difficult time. Not knowing how Maddy would be, not knowing exactly what condition she had, in the earlier days, not even knowing if she would make it home. For me, the pregnancy was even harder than NICU. Well, it was different. NICU was incredibly frustrating, but at least Maddy was incredibly healthy. The healthiest baby there, I think. Apart from that first week, I never worried about whether we would bring her home. I only wondered how long it would take!! 

I had forgotten how sick we were this time last year. This time last year, Bernard had shingles. In Maddy's first couple of months, he also had hand foot and mouth disease.

There's still a week til Maddy's first birthday. We're not doing anything big to celebrate - we're just taking the girls to Disneyland. It's probably more for Lana than for Maddy - but it will be nice to spend the day together. We'll make sure that there is cake and candles somewhere in there. And I'm sure that I'll be doing a whole lot of remembering...

Friday, July 22, 2011

Why I don't pray for a miracle

First of all, I have to say that as a Christian, I believe in the supernatural. I believe in miracles. I believe that healings still happen today. However, I do not pray for Maddy to be "healed" of her dwarfism. Not because I do not have faith, but because I completely believe with all my heart that God made her different for a reason, and to change that one aspect of her would be to change who God made her to be. 

There are people in our lives who seem to be fixated upon the fact that Maddy is a dwarf and they continue to "pray for a miracle" for her. This really bothers me because these people are missing a very important biblical truth. I wrote part of my thoughts on this topic over a year ago in this post - "My thoughts on God and suffering" (have a read, if you haven't already. It's one of my favourites). Simply put though, they are missing the fact that sometimes God allows something that looks like weakness to the world in order to show His strength. In my pregnancy, I felt a lot like Paul did, when he prayed and prayed for God to remove his "thorn in the flesh". God's answer to him, as it was to me, was "No - my grace is enough for you". And so Paul learned to accept and boast about his weaknesses instead of continuing to pray for God to change the situation.

In order for God to "heal" Maddy, he would need to change her DNA completely. He would need to go into every cell in her body and take out the affected DNA and replace it with different DNA. DNA that was not Maddy. There is absolutely no difference in me praying for God to heal Maddy's dwarfism as there would be if I prayed for God to change my Chinese husband and make him Caucasian. Or if I prayed for him to turn my uncle into an aunt. We can all see that features such as race or gender would fundamentally change who someone is - and it is the same with this one little gene that causes dwarfism. If God changed it, he would be fundamentally changing who Maddy is - and I don't want that. I love my daughter the way that God made her, and I wish that everyone else would too!

Today I came across a fantastic new blog called Noah's Dad. Noah's dad was writing about this same topic and echoed my thoughts so well - in fact, his post was what inspired me to write this. He says:

... sometimes when people say they are praying for our son they have this tone in their voice like they are praying for him to be “healed” of the swine flu, or the chicken pox. I jokingly (and I really do say this) say to them, “No!  Please don’t pray for our son to be ‘healed’ of Down syndrome. We really like our son, and would prefer to keep him!”
... If you were to “take away” Down syndrome you would take away our son.  He would have a completely different genetic code, thus being a completely different person.

So pray for him to behave, pray for him to come to know God through Christ, pray for him to develop into everything God has created him to be, pray for him to be loving, and kind, and pray for the small hole in his heart to close up before we go back to the doctor.

But please don’t pray for him to be “healed” of Down syndrome.

So in my own words, I want to ask you all - please continue to pray for Maddy. Pray that she will be the healthiest Diastrophic Dwarf in the world, that she will not have many of the common complications of her condition. Pray that when she has the surgery to close her palate, that she will respond well to the anesthesia. Pray that she will grow up to be loved and accepted by all, that she will develop a strong sense of identity. Pray that she will excel in everything that she does. Pray for her character. Pray that she will learn to accept that God made her differently and that she will allow Him to be made strong through her weaknesses. But please do not pray that that she will be made different than who she is. By doing so, you are praying against one of the very things that God intended to make her special.

Tuesday, July 19, 2011

The last two months in Medicine

I can hardly believe that we've nearly been back in Hong Kong for two months now! In that time, we've had a few different doctors appointments and we have some important ones coming up as well.

Our first appointment when we got back was with the ENT and pulmonologist for a joint upper airway clinic. Both of them are very happy with Maddy's breathing - particularly since she was fine on the plane. Maddy still has minimal stridor if she is congested or very agitated but nothing really that we need to be worried about on a daily basis. I mentioned to the ENT that I would like to get Maddy's hearing re-tested. I know she is not "deaf" - she can hear a loud noise and looks around for where it is coming from - but some hearing loss is not uncommon in kids with DD and I'd rather stay on top of it so that IF there are any issues, we find them sooner rather than later. One possible indicator for hearing issues is speech development, and Maddy's speech is not as advanced as Lana's was at the same age (although that's probably a poor comparison because Lana was an extremely early talker). So we are on the waiting list for that, apparently. No idea how long that will take, but at least it will be followed up. 

We also had a cleft-palate appointment. They basically want to keep following up with Maddy every 3 months until they decide it is the optimal time for her cleft repair surgery. It could be at any time between 15-24 months - but for now, we're just waiting for her to grow a little more first. These doctors are my least favourite out of all our doctors. The one who needed to look in her mouth was so rough with her, he just forced the paddle pop stick in her mouth and pushed her mouth open to check on the cleft. I would have thought that surely someone who needs to check cleft palates on a daily basis would have figured out by now a more gentle approach? I'm thankful that this guy is the ONLY doctor we've had that has been so uncaring. I'm not so happy that chances are, he might be the one in charge of Maddy's first surgery. But maybe he was just having a bad day, or maybe I'm overreacting - I don't know. I'll definitely be a bit more wary next time we see him... 

We have also in the past month seen the pediatric dentist team - and I have to say that out of all the doctors I've seen in Hong Kong the entire five years I've been here, they were my favourite! Such a change from the cleft palate doctor. And they know how to look in a baby's mouth as well - all they need is a little tickle, make them laugh, and voila! Better than making them scream! We were referred to the pediatric dentist months ago when Maddy was having feeding complications. They thought perhaps a palatal obturator would help those issues. In the meantime, her feeding has greatly improved and the dentist said that unless they cannot eat without the obturator, chances are the obturator would just be a hassle. So no obturator for Maddy! They do want to continue to see her for other cleft-related dental issues though, so we will be going back about once a month or so now. They also have access to speech pathologists which Maddy could possibly benefit from - if not now, then in the future. 

Just last week, we had our neonatal follow up appointment. All was well there - but I wanted to talk to the doctor about allergy testing for Maddy. Maddy seems to have a dairy allergy. I've tried to give her yoghurt and cheese a few times and every time, she's had an immediate reaction - sneezing and mucous. Once I think she got some in her eye and her eye almost swelled closed. I mentioned these issues to our GP but she wasn't confident drawing blood from Maddy, plus the scratch test isn't covered by insurance. She suggested that since we're already seeing the public doctors, if we mentioned it to them, we could get them to do the testing for free - plus if she needs blood drawn, they have significantly more experience drawing blood from difficult babies. The neonatologist has now referred us to the immunologist and we will do the testing with them in about a month's time. In the meantime, it's no dairy for Maddy!! 

So that's all that's been going on medically in the past couple of months around here. Next week, we're back off to the dental hospital, then next month we have the immunology appointment. In September, we have another cleft appointment and probably the most important appointment of all - the orthopedic appointment. Maddy will be a year old then and we will repeat all her x-rays and see if we need to do anything orthopedically. My main two concerns are her spine and her feet - her spine, to see whether there is any scoliosis or cervical kyphosis (curvature). Both are common DD issues that we just need to continue to follow up while she is growing. Then secondly her feet - I know they have some turning that may possibly need correction - and her feet are one of the main issues in determining how mobile she will be in the future. We'll see how that goes - please continue to pray for those two issues in particular!!

Everything has slowed right down with the medical appointments lately, and many of the issues are stable, but we still need to follow up. So I might just update the medical side of things every few months, or when there is any actual "news" to report.

Monday, July 18, 2011

Some more videos

Just what you've always wanted, right? I've NEVER posted videos on this blog until the past week or so (unless you count that one that was a slideshow of photos about 6 weeks ago) - and now I'm a video-maniac!!

First: Here's how Maddy gets herself into a sitting position

And secondly, here are my two girls having a good ol' dance. I was wanting to get a video of how Maddy actually pulls herself up to stand - and I got a couple, but this video was heaps cuter so I'm posting it instead ;)


Sunday, July 17, 2011


It seems like every single day, Maddy is learning something new!! Just today, she started "jumping" on her bottom - this is harder than it looks! If you don't believe me, try it yourself. I did and hurt myself ;) hehe Please excuse Lana flashing the world in this video, she just wanted to be part of the action,

In addition, today for the first time, Maddy has figured out how to go from laying to sitting. Not an easy task since she doesn't use her arms at all! She does it by laying on her tummy, bending her legs underneath herself until her bottom is right up in the air, then she flops down onto her bottom. I don't have a video of this yet (nor do I have a good video of her standing, which she is doing quite well when she wants to) - but I'll see what I can do. Sorry for the video overload lately, but she's just doing so many new cool tricks and I want to share them with you all :) 

PS - I don't know if you all noticed, but I changed the header to one of my all-time photos of Maddy. I had been wanting to do that for ages - that old header was made when she was still in the hospital with the feeding tube in - and when a friend commented about how pitiful she looked, I figured it was about time to get my act together ;)

Friday, July 15, 2011

Maddy and her Elephant

Maddy often plays with this big, blue elephant. It's pretty huge and she will flop herself onto it and exercise her leg muscles in the way I described in my previous post. I managed to catch a little video of it and thought I'd share it with you all :)

Monday, July 11, 2011

New Skills

It seems like every day just about, Maddy is growing up a little more and doing something new. I've been trying to photograph them all and get videos, but whenever a camera comes out, Maddy is more interested in grabbing the camera than she is in performing for me ;)

Maddy's fine motor skills are getting better and better all the time. She loves to hold onto rice crackers and feed herself - she goes through so many of those things. She can even feed herself blueberries! She is holding her own bottle (that took longer than usual, understandably) and also can pick up her water bottle and attempt to drink from it (usually she doesn't tip it far enough back though). She loves paper for some reason, and whenever she gets her hands onto a piece, she plays "peekaboo" with it - SO CUTE :) And she is always fascinated by the smallest speck of dust - she will cross an entire room to pick up something I can barely even see ;)

Maddy is moving more and more every day. I mentioned in my previous post that Maddy probably won't really crawl, but I realised that she kind of DOES "crawl" if you want to call it that. When she's laying on her front, she can go forwards, if that constitutes "crawling". It's not a conventional crawl, or even an army crawl. I think it's best described as a "caterpillar crawl" - she'll kick with her legs and put her little bottom up in the air, then slide forward with her head. I'm sure it's not comfortable - but when she's laying, she can't get herself into sitting position yet - so she's gotta get around SOMEHOW ;)

Talking of moving, Maddy is REALLY wanting to stand. Her hands are not strong enough for her to be able to pull up like most babies do, so what Maddy does is find a raised surface like my legs, a pillow or a large toy, does a face-plant onto it, and then maneuvers her feet so that they are on the ground. Of course, her body is stuck at a 90 degree angle to her legs - but that is how she "stands". If I let her use my hands, I can help her to stand up straight with her feet on the floor and she will jump up and down. Maddy does a "see saw" kind of thing with her legs where, keeping her legs straight, she will go forward onto her feet lifting her bottom off the floor, then see-saw back down with her legs still straight onto her bottom. It's hard to explain but it reminds me a bit of how Kai gets around in this video that I already shared with you all (especially watch how he gets from laying to sitting. Maddy is already trying to use that same method - but she's not QUITE there yet). 

In addition to these motor skills, Maddy is also developing some social skills as well. She loves to wave to us now, and for a long time, she has loved to shake her head "no" and nod "yes". She seems to know the funniest times to insert them into a conversation and she loves to make people laugh. I'm trying to consistently sign with her - but I'm not the most consistent person in the world ;)

I will keep trying to get these new skills on video to share with you all :)

Monday, July 4, 2011

Moving :)

I had heard of and seen other babies doing the typical DD "Butt scoot" (check out Guilherme doing it here - note the blog is in Portuguese but Google Translate makes it readable, even if the grammar is not perfectly correct ;) ) and I was looking forward to Maddy doing the same. On my birthday at the end of May (aged 9.5 months), she began rotating on her bottom - not moving in any direction yet, but at least MOVING. Then a couple of weeks later at age 10 months, she started going forward!! As you can see in the video below, it is still a little to the left, a little to the right rather than in a straight line - but regardless, it's pretty adorable!! And it gets her where she wants to go, which is all over the place!! 

Maddy probably will not really crawl effectively. She rolls around a lot on the floor - this way and that, turning and twisting all over the place. She does push up, but it takes her a lot of effort and so crawling really wouldn't work very well with her short arms and legs - but the above butt scoot works just fine :)