Sunday, May 31, 2009

Getting Back into Life

After Samara recovered from her stint in hospital, we went up to Kerreigh's place near Kingaroy, for Easter Weekend. With her 6 girls, and 6 of our girls, it certainly was a full house! While we were up there, we took the opportunity to paparazzi-ise the babies again. Here's a couple of the pictures. First we have Samara and Veritee going head-to-head. Which could be something that happens for real as they get older. Next we have Veritee. She has the most amazing blue eyes, which I just had to show off with this picture! I also got one of Samara on Michael's arm. I didn't notice til a couple of days ago, but I had a similar one taken impromptu when Samara was 9 days old, so got rid of all the hospital paraphanalia using photoshop, then made this digital scrapbook of it. I love how it shows how much she's grown(and even more since!!)

The following week, Jason (K's hubby) had to go to Sydney for the week. Kerreigh doesn't like being home on the farm without him there, so the girls and her came and stayed at our place. Now, if we thought we were crowded in her big farm house, you can imagine what it was like in our shoebox! Sara came and slept inside for the week, and gave up her caravan for them. Somehow we got through it all, and even got more pictures of our beautiful babies! I especially like the matching princess dresses I found for them at Trade Secret, down from $70 to $5!

Because Kerreigh lives so far out of town, she doesn't get to do a lot of shopping in the big smoke. So it was a week that was pretty hard on the pocket book! But it was great to get out and about after being cooped up so long with my leg. By this time I was in a moon-boot, and could put minimal weight on my leg. I could also drive, which was a good thing, considering Kerreigh doesn't have a licence! We spent an inordinate amount of time at Trade Secret, Pumpkin Patch and Toys R Us! We also did a lot of op-shopping which was great, and we got quite a few bargains.

That week, we also started Samara on solids. Well, thick liquidy stuff that used to be solid, anyway! She started off with pear, and went at it like a pro! Here is a shot of the 2 babies feasting up a storm.

The only thing is, I can't honestly say this pear was her first solids! On the plane on the way back from New Zealand, Samara was sitting on Renata's lap. Renata, at the time, was eating a semi-melted bar of chocolate. You can see where this is going, can't you? Yep, sure enough, Samara leaned over and took a decent size chomp!! But how can you put in her record books that her first solid food was chocolate at 3.5 months corrected??!! So, for the record's sake, we are sticking with her first solid meal was pear at 5.5 months corrected.

Things went along nicely, until 4 days later when we tried her on apple. Within minutes, her face, head, torso and legs were covered in a nasty rash, and she screamed for the rest of the day. I wasn't sure whether it was an allergic reaction, causing a rash, which left her screaming, or whether she was just screaming about something unrelated, and the screaming caused like a heat rash. So we went back to pear for the next few days and then tried apple again. Same reaction. We figured we weren't going down that road again! WRONG! The next food we tried her on was banana custard. She had the same reaction. I read the ingredients label - who woulda thought? It contained apple! Then we checked out everything else we had. Even half the vegie mixes on the market contain apple!

For now, we are waiting to see a dietician, so for safety's sake (especially since apple is supposed to be low-allergy), we are sticking with pear, and baby rice. She still seems to react to other things though. She had a reaction to something today. Don't know what it was, although she did try putting Bryanna's popcorn in her mouth. Bryanna took it straight back out of her mouth, but now I wonder if corn is a problem too. She also seemed to react to a shirt Michael was wearing the other day. It must have been the powder it was washed in or something (it was a shirt he hasn't worn in months). Every time he held her, the rash came up, then would go down again after an hour or so of him not touching her. So he changed shirts, and the problem went away. I am quite worried about just how much she is allergic to.

Anyway, I'm getting a bit ahead of myself here! Over the next few weeks, leading up to now, we had 2 birthdays. Mahalia turned 10, and Renata turned 16. Mahalia had a combined birthday with the next door neighbour who turned 4. We went down to Suttons Beach. It was a beautiful day - something that didn't happen often on birthdays in NZ! Here she is cutting the Camp Rock birthday cake Renata made for her. Unfortunately I didn't get much in the way of decent pictures, as I was still pretty incapacitated with my broken ankle! I could limp around with crutches but that was about it.

We haven't celebrated Renata's birthday yet. 2 of her friends are down on the Gold Coast at the moment (Lauren from Childers, and Melody from New Zealand). So tomorrow we are heading down there to go to Seaworld with them. Then we are going to an all you can eat restaurant in Brisbane with them for dinner. Melody is staying the night tomorrow night, before flying out to England on Tuesday morning.

Just after Mahalia's birthday, Bryanna was washing dishes one Wednesday night. Michael and Sara had just left for SES (State Emergency Services - they are volunteers, and have meetings on Wed nights), and I was online on the laptop in my room. When Bryanna started absolutely screaming blue murder. To tell the truth, when Bryanna screams, my first thought is spider, or some other creepy crawly. And, this is Australia. There is ample opportunities for screaming here! Well, the screaming seemed to go on and on, and get louder and louder. In fact, it was louder than usual. And if you know Bryanna at all, that's pretty darn loud!!! So I went to investigate. (now, this sounds like it took ages, but it was probably all in the time it's taken for you to read this paragraph this far!) Anyway, Renata had been cooking some potatoes, but had too much water in the pot. Now, bear in mind that Renata has Aspergers Syndrome, and can only really follow one track of thought at a time. So, to her, the logical thing to do, was to tip some of the near boiling water down the sink. Well, Bryanna was using the sink, remember. Anyway, the end result was poor Bryanna ended up with second degree burns all over her hand! Michael raced home from SES and took her up to Redcliffe Hospital. They wanted her to go up to the Children's Hospital int he city (not sure if that's cos they have a burns unit, or because they couldn't handle the screaming!). Well, they had to send her by ambulance as she had been given morphine. So, Bryanna, being Bryanna, proceeded to tell them that the only other time she had been in an ambulance was when she was faking! Well, you should have seen the look of horror on the nurses face! Unfortunately, that nurse was called away, and never heard the whole story (which we made sure the ambos heard!). The story was that, when she was in St John Ambulance Cadets in New Zealand, they were having first aid competitions. She was being an asthma patient and had to act sick! The competitors then had to get her ready and into an ambulance! LOL. Well, the burns looked pretty nasty, but thankfully after a couple of weeks, they started to heal up really well. Now there is a small bit of scarring, and between her fingers looks a bit red, but apart from that, she is all good.

Over the last couple of weeks, as I mentioned the other day, I have started getting into digital scrapbooking. Next time I am on here, I will post some of my pages. For now, I need to sleep so I can make the trip down to the Gold Coast tomorrow. I am a bit concerned about walking around all day though. I still have the crutches, but that's a bit awkward, and I do get sore if I am upright too long.

Photobucket is back!!

Ok, so it's not technically Photobucket's fault, but at least I can get back in! Trouble is, we don't have the same email address any more, so I couldn't reset it!! So I kept trying til I got it right! Anyway, here's some pictures from Samara's dedication. We have her in the antique bonnet we found at a Red Cross sale a couple of days before the dedication (which happened to have almost matching lace with the gown). Sara, Renata, Christiana, Bryanna, Mahalia and Samara after the service. And Samara once we got back to dad's place.

The biggest disappointment of the day was that Alicia had come down with a tummy bug, so wasn't able to come down for the weekend as planned. Aside from that, it was a lovely day (apart from the weather!), and we even managed to get some
pictures of everyone with Samara, with her NGT out! After the service, our friends daughter Megan, who was almost 19, and has DS, got to have a cuddle with her. I got a couple of pictures. Here is one of them. It was really nice to catch up with Andy and Dorothy (Megans parents) and just have a chat about things. It's amazing how much has changed just since she was born. They had to wait 6 months for her diagnosis to officially come through! I also got to chat with a mother from the mums group at church who has been given a high risk for Down Syndrome with the baby she is expecting in June.
2 days after the dedication, Michael had to head back home to do that dreaded thing called work! He caught an overnight bus up to the airport, so he never got a chance to see Alicia again - which tore him up a bit!
The rest of us continued catching up with family and friends over the next couple of weeks. We also bought some NZ lollies. That was the real reason for the trip. New Zealand has good junk food! Seriously though, it was really good to see everyone again, but hard too, not knowing when we will see them all again.

Just to make things interesting, on the Tuesday before we came home, Christiana whacked her fingers against the door frame, and was in quite a bit of pain. It didn't really settle over the next couple of hours, so I thought I'd better take her to hospital for an x-ray. As we were heading out to the van, I stumbled on the step and broke my ankle in 2 places!! Turns out, Christiana's finger was fine. She had it splinted for a couple of weeks, but it wasn't broken. As for me.....well, that was a different story! It kinda put a damper on the rest of the holiday. I didn't really go anywhere after that. But, I must say, it sure made things breezy for the trip home. I was whisked through customs, taken on to the plane first, then rushed through customs again at the other end! I also got to sit right up front where there was more room. Don't know if it was worth breaking my ankle for it, but hey, you've gotta love any advantages you can get in international airports!

Despite the seasons changing from Summer to Autumn while we were away, it was still pretty hot when we got home. Not much fun when you're in plaster for 6 weeks. I divised all sorts of ways of itching it. Don't know that the hospital would be impressed, but at least I got a bit of relief. Living in Australia, my biggest fear was getting fire ants in the cast! We have them living outside our house, and I worried about it every time I went out the door! Thankfully THAT never happened.

The next few weeks were pretty boring, and I got major cabin fever. Michael had to take time off work every time Samara or I had appointments at the hospital, which was a bit of a hassle. Good thing his bosses are pretty understanding.

The one outing I did have was to the Picnic on World Down Syndrome Day. I didn't get around much once we were there, but it was good to get out, and also to meet some other parents, adults children & babies with DS, and siblings. It was a beautiful day - not too hot though! The girls all got their faces painted. Even Samara!

3 weeks after we got home, Samara came down with RSV. She was really struggling to breathe, and had to go into hospital and on oxygen for a few days. Aside from the pain of seeing her suffering, we had the added hassle of my ankle. I still couldn't drive, and I couldn't stand to look after her either. So each day, Michael would drop me and a couple of the girls at the hospital in the morning (he was staying there overnight), then pick us up after work. Here she is in the giant hospital cot. (Made her look little again). One thing I have to say - I am so glad we live in a time when apnoea monitors are easy to come by! It certainly helped me sleep better when she came home. Mind you, all of our girls after Sara (#2) have been monitored, as Sara had apnoeas for at least 10 years.

OK. It is 2am. Probably time for me to get some sleep, insomnia isn't a lot of fun. But at least I have the internet to keep me company while everyone else sleeps.

Wednesday, May 27, 2009

New Zealand

On a suitably hot and sticky (read, typical) Brisbane morning, we all (just barely) boarded our flight to New Zealand. Seriously, we got there 5 minutes before the check-in counter SHOULD have closed, waited 10 minutes in the line NEXT to where we should have been, then discovered they had closed our line early! They weren't going to let us on, except that we were travelling on NZ passports. The Asian lady behind us was turned away.

Anyway, 4 hours later, we arrived into a cold South-westerly (yes, that's the COLD wind in our part of the world!), rain and 16 degrees C. Samara burst into tears as soon as we walked out of the airport! She had never been cold before LOL.

Michael's brother had arranged a van for us to hire, and met us at Christchurch airport. We headed straight for Timaru, via the Golden Arches (which is definately more expensive in NZ than Australia). Personally, I was only interested in finding a decent ice-cream shop! Australia's icecream is nowhere near as good, is more expensive, and is not as readily available, or in as many flavours!

It was really nice to see our family and friends again. But it was pretty hard to see what once was our house, levelled to the ground:( Quite a few businesses had closed down. The first time I really saw any evidence of the financial crisis. We didn't actually get out much while we were there. Samara was sick for a week of our trip, and with the cold weather, I wasn't too keen on taking her out.

The weekend after we got there, we went down to Central Otago to help our oldest daughter, Alicia, move from Omarama to Christchurch for Uni. It was nice to see her, but it wasn't for nearly long enough! I wish we had the time (well, I wish SHE had the time) to just hang out, but I guess part of growing up is getting your own life. And besides, it was the week uni started!

The second weekend we were there, we had Samara dedicated at our old church. Mum had made her one of the gorgeous gowns she is famous for. Here is a couple of pictures: OK, maybe not. I've forgotten my Photobucket login, and we don't have the same email address any more!! Um, I'll have to try later, I've been sent away in disgrace!

Monday, May 25, 2009

Feeling Guilty

Whoops. I didn't mean to take a week to get back here! Truth is, I have spent most of my computer time making digital scrapbook pages. I don't have the space here to get out my scrapbooking gear, so I have had to find another outlet!!

Anyway, back to my story. Over the next few weeks, Samara was a bit up and down with her feeding. For over a week we even managed without the tube. I really had my hopes up there, but then she started to get all sleepy and hard to wake up again. So that one didn't last. At least one good thing with me changing the tubes though - we got to take some pictures without it!

She has it in, in this photo, but after all the photos of first cuddles with her sisters, this was one of the first pics of her at home. Here she is in Mahalia's dolls pram!

Christmas Day was really surreal. We had always spent Christmas with a ton of family, and were rushing around everywhere. Our first Christmas in Australia wasn't so bad, because we had just been down to my brothers place in Young, where my sister was staying also. And then Christmas Day we spent with friends. But this Christmas was different. It was just us. It didn't really feel like Christmas. We went down to the Lagoon, and found a tiny spot of shade under the only tree left in the place! It was packed out!! And even then, to find that tiny place to sit, we had to go out on one of the pieces jutting out into the water - you should have seen us try and get the pram out there! I didn't go in the water, but the girls had a good time. Here is Sara giving Samara a hug after we had stripped her down to her nappy to try and cool her off a bit.

One of the best things about Christmas, was Mahalia's ability to make us feel like it was really appreciated. I was really happy to have gotten this picture of her opening one of her presents...

Isn't that totally awesome?! She had absolutely no idea what it was! I asked her why she was so excited then, and she said "cos it's a Littlest Pet Shop something-or-other!" - Out of the mouths of babes!

I also got a cute picture of Samara wearing a Christmas singlet that my friend Jo gave her. And look - No Tube!! That was during her good week where she was taking all her feeds from me or the bottle.

We didn't do an awful lot over the next few weeks. I wasn't too keen on exposing Samara to everyone's bugs and things. It was hard though. I wanted to take her out and show her off to the world! Let's face it, the world was missing out by not getting to see how gorgeous she is!

In January we went to Val Stares place for a family Above Rubies Camp. Val is the Australian Co-ordinator for Above Rubies, and she has a farm that she opens up to everyone a few times a year. This was our second time going. The first time, our tent got flooded when there was a torrential downpour while we were setting it up. (We were new to Australia then, and really had no idea about the weather patterns here - as the ad says it's 'the kind of weather only Queensland can throw at you'.) Well, not to out-do ourselves, but this year, we got to camp only to discover that our tent inner wasn't there - only the fly!! I don't think we were cut out for camping!! Anyway, the next day we had to drive to the Gold Coast and buy a couple of smaller (cheaper!) tents to last us the week! Both times we spent the first night sleeping in the 'lodge' which is a shed on the property. Unfortunately, I didn't enjoy myself as much as last time. It was hard having to express with a hand pump, sitting in the HOT tent, away from everyone. Also, sad to say, but there was that feeling of not being the same now that we had a disabled child. It was probably all me, to be honest. But I suddenly felt not as good as everyone else - like I was being punished for something. Like I said, it was really just my own sense of grief and coming to terms with it all, no-one did anything to make me feel that way. But it did put a damper on the whole week. I guess the trick is, to use the experience to help me grow, and not dwell on it in a negative way. There is a women's camp coming up this weekend, and if I could afford it I would go. But that's not going to happen:( Here is a picture I took of Bryanna when she didn't know I had the camera trained on her. She is watching an impromptu cricket game at the camp.
The camp ended on my 39th birthday. Only one year short of being 'old' by Bryanna's standards. Uh-Oh!
The next few weeks were much of the same as the weeks before camp. But, they were spent in major anticipation. On 11 February, we took off for our first trip back to New Zealand....

Monday, May 18, 2009

Growing and Getting Stronger

The next few weeks were spent just fattening up, and trying to get feeding established. I was still pretty determined to breastfeed, despite the drs tell me she wasn't going to get the hang of it. But we kept persisting. Basically, I would express first (to slow down my milk flow) then give her a bit of a breastfeed, while monitoring her sats. If they got below about 60% we stopped the feed and finished off with a tube feed. She was also having thickened bottles as well. They wanted Samara to stay in hospital until she was having no tube feeds. This seemed a bit ridiculous considering how many kids out there are tube-fed. So we had a meeting with the drs, speechie, lactation consultant, transfer co-ordinator, nurses etc, and they agreed to let us take her home on tube-feeds. Over the next week I was to learn how to put them in, test they were in the right place, what to do in an emergency etc.

The Royal wanted to transfer us to Redcliffe Hospital, but I wasn't happy about it. All the research I had done didn't leave me very confident that she would get the best care there. Also, at RBWH, they have a parentcraft room. It is like a mini motel unit, where parents can spend a night or two with their baby before going home. If I transferred to Redcliffe, rather than parentcraft, I would have to stay in the maternity unit with Samara. I really didn't want to be put back in hospital, where I would have to spend a couple of nights in a room with 3 other mums and their healthy full term babies, when I had a sick pre-term disabled baby who I was learning to tube-feed. Emotionally I just wasn't up to it. They tried to get a Social Worker to change my mind, and I was all ready to go and see the Psych I had been under for depression/PND and get her to back me up. But thankfully they realised I wasn't giving in, and we got to stay!

Finally, on December 5 (Christiana's 14th birthday) we got to come home. One of the rules in the nursery, is that the only people (apart from the medical people of course) allowed to touch the babies are parents and grandparents. Needless to say, it was a long, long wait for her sisters who weren't allowed a cuddle for those first 2 1/2 months! You can imagine the joy (and the fights!) when they were finally allowed to hold her. Here is Mahalia having her first cuddle that day.

Life at home quickly settled into a routine of express, breastfeed (I noticed that she could cope for longer if I was laying on my bed, so would try that once or twice a day) or bottle feed, and tube feed. By then it was time to start the cycle over! But I was determined that whatever it took, I was going to do the best I could to give her a good start.

She was a very sleepy baby, and it took a lot to get her to wake for feeds, but this is where it was a real God-send to be able to tube feed her if we needed to.

Going into hospital in August, and being in air conditioning for so long, it was a massive shock to come home in the middle of a Queensland (read hot and humid!) summer. Some days, the only thing I could do to cope was take several cold showers! I tried to get out for a walk each day, but I would come home on the verge of passing out! We are blessed to be living right near a beautiful beach, and if we were lucky, there would be a nice sea breeze blowing. Here's a couple of pictures of our beautiful part of the city. Suttons Beach, above and the Sanctury Cove Lagoon to the right. The Lagoon is a big free public pool that is absolutely gorgeous! (so long as you don't use the toilets!)

Our new home was (is) a lot smaller than we were used to. 2 and a half bedrooms for 6 kids + Michael and I! By the time you count all the baby gear, it has been a real squash. But, it's a roof over our heads, and at least we live in a warm climate so aren't stuck inside all the time. Speaking of warm climate - we don't have air con here. A BIG problem when it's the middle of summer. Before long (and with a lot of pleading)Michael went and got a portable air conditioner. It wasn't the most efficient thing in the world, but at least I felt like I could breathe.

Apart from the heat, it was great to be home. I finally got to meet some of our lovely neighbours who Mahalia had made herself known to! We are truly blessed to live in a street with some of the nicest people! I think that it is almost worth being this squashed just to be living in this location!
And, that's the story of our homecoming. Later I will put up some more pictures......

Saturday, May 16, 2009

Coming to Terms with it all

The week or so after her diagnosis was a difficult time. Having to tell everyone. I mean, how do you tell people something like this, especially so long after she was born? I was really worried how people would take it. Especially some of the older generation in our families. I didn't want to say anything until we knew for sure, but then my sister texted me asking how Samara was doing. I didn't know how to reply. Sure, she was doing fine, and I could have just said that, but somehow I felt like it would be lying. So I did something that was pretty mean really. I told her there was possibly a problem, but the drs were doing some tests. Well, next thing I was getting texts from mum, dad, and another of my sisters. I hadn't thought about the fact that I was just getting them all worried that she was dying or something. So I told them what they were thinking. And you know what? They were all great! It's amazing how much credit I wasn't giving them!!

I told all the mums up at the nursery too. It was really good. In a place like that, we were all going through turmoil of some sort with our babies, so the atmosphere was so accepting and supportive. After getting over the initial shock, my friends were all great too. Although, one thing I found really hard was a couple of people that told us if we had enough faith, God would heal her of this! Sorry, but that really hurt. It made it seem that she had this because we didn't have enough faith - ie, that it was our fault. And that it would continue to be our fault as long as she wasn't 'healed'. Sara made the comment 'why? We like her just the way she is!'
Of course, there was the 'Why God?' questions that lurked around the corners of my mind. But I never believed it to be an accident. We live in a fallen world. These things happen. God knew before the beginning of time. It may have been a shock to me, but it never was to Him. And when I think of all the things over the years that had prepared me to be her mother....well, it just gave me a lot of comfort.

Anyway, that's a lot of text with no pictures. I feel in need of another picture of our gorgeous little girl!

Isn't she just adorable? I love how tiny she looks here! This was taken the same day as the other one in the teddy outfit. I kinda miss her being this tiny. I love how she is now too, of course, but there was something just so huggable, and kissable, and warm fuzzy inducing about holding such a tiny little baby!

I can't remember whether I noticed it before or after her diagnosis, but for a while I had noticed her oxygen saturation levels (sats) were dropping (desatting) significantly with every feed. This was when she was still being totally tube-fed. I mentioned it to the drs, who said they would keep an eye on it - but, truth to tell, they didn't. A couple of days after talking to them, she reached the age where they change them from a sats monitor to an apnoea monitor. I was pretty mad really. They said, but she's 35 weeks now - she doesn't need it. They were basing their decision totally on her gestational age, not her condition! I was pretty upset about that. Anyway, this was about the time that I started trying to breastfeed her. I wish I started blogging back then - maybe I'd be able to remember what happened and when, but I am being as accurate as I can. Well, around this time, I noticed that she was really struggling to breathe when I was feeding her. She would get a marked tracheal tug (where her throat was getting a deep hollow) as she tried to breathe for several 'breaths', and then she would gasp, breathe ok for a few seconds, then the cycle would repeat. I tried to tell the staff about this, but they weren't too worried. They said it was all just part of being prem. Thankfully a couple of days into this, the lactation consultant was sitting with me during a feed, and was quite concerned about it. WHY can't dr's learn to listen to mothers???? Anyway, at least this meant some action. We had her put back on the sats monitor for her feeds, and this confirmed that she was desatting to around 45-60% during feeds.

The next day, the ENT specialists came to see her. They said they could see some webbing in her throat. They arranged for her to have investigative surgery a couple of days later. They told us that she may need a tracheotomy. Well, that had me in tears! Mum's friend and her husband (who has a trach due to throat cancer) came to visit and prayed for her. Well, the great news was that when she went into surgery, there was NO SIGN of any webbing!! However, they said she did have mild laryngomalacia (which is basically floppy airways). Apart from that, everything looked fine.Here she is in the 'limosine' ready to go over to the Children's Hospital for her op.

We did have a big scare after the op though. She was in the Intensive Care Nursery (amazing how huge she looked in there after her few weeks growing in Special Care!) after the operation, laying on her tummy. When it came time for a nappy (diaper) change, we turned her over, and her oxygen sats dropped to the 20's! She turned blue, and the nurses came running. They gave her oxygen, but it took a while to come back up. You know that it's time to panic when all the nurses start to panic! And believe me, I did. We discovered that it was simply easier for her to breathe when laying face down (and when she gets a cold, we still put her face down). So she spent the rest of the day wearing her nappies backwards!!

These pictures were taken in NICU after the operation. I love the closeup of her face. It is the first time we saw her without the tube!

A few days after the surgery, Samara had a barium swallow. This is where she was feed formula with barium in it, which was x-rayed as she drank it. This showed that she was aspirating (breathing in) her milk. So this was the major cause of her desats. As a result of this, we went to a combination of thickened expressed breast milk (EBM) and tube feeds. We also fed her with a special needs Habermann bottle, which allowed us to control the flow. Another thing that had shown in the swallow study was that she would take about 30 sucks in a row without pausing. Normal is about 6!

By this stage, the whole Down Syndrome thing had just become a part of our lives. I was over the major sob-sessions (although minor ones still crop up from time to time!) I had decided to become pro-active, and search the net for anything we could do to help her. This is how we found the TNI and Changing Minds protocols I mentioned the other day. They weren't going to be 'miracle cures', but it looked like they would help Samara to have a better life. And, I think so far, that they have helped. She is not as sick as we were warned about, and she is pretty clever too, if I might say so myself LOL.

She had her postnatal hearing test at 36 weeks gestation. This is given to all Australian babies. They didn't have it when my others were little, so it was pretty fascinating. They use a probe taped to the forehead to measure brain activity, as they play sounds through little headphones. I called it her first i-pod. Take a look....Isn't that just so cute?

By this stage, she had reached the magic 1800gm too, so she was moved from the incubator to a cot. This also meant she was able to graduate from sponge baths to the real thing!

I'll leave you with a picture of one of her first baths....

Thursday, May 14, 2009

A small digression

I have been asked about the supplements Samara takes, and also the Changing Minds Protocol I mentioned in an earlier post. The links for these are: and

The nutrivene is a combination of vitamins and minerals that has been especially formulated for children with Down Syndrome. It views DS as essentially a metabolic disorder, which causes our kids to be short on certain nutrients. It is these deficiencies that nutrivene seeks to alleviate. The theory is that a lot of the symptoms associated with Trisomy 21 are caused by this lack of nutrients. Things like intellectual disabilities can be caused/worsened by lack of (for example) zinc - which is something T21 people are low in. It also helps by building up immunity, hopefully reducing the number and severity of infections they suffer. The website sells this product, so may be biased in it's claims, but while I don't see it as a miracle cure, I think that it does help.

The Changing Minds Foundation was started by a mother of a DS boy, who went searching for answers. They promote the use of Prozac, Ginko, Phosphatidylcholine, Focalin XR and Fish Oils to help with IQ. Their results so far are very promising. The theory is that babies with DS lose half the neurons in their brains by the time they are 6 months (this is known), and that these products help to rebuild them. They promote cell growth, concentration, memory etc. There are no proven clinical studies at this point, but then, those of us with DS kids don't have the time to wait and see over the next 15 years or so. Personally, I can only go by what has been seen so far. They don't sell the products - in fact, some are only available on prescription. They have a printout you can take to your GP explaining it in doctor-ese. They do sell a DVD that shows some of their kids in action before and after starting the protocol. Apart from the DVD, and, now, a couple of the products, the fact that most of the products come from the local chemist or health food store lends a bit more credance to their claims. (well, to my way of thinking anyway)

...chapter 2 of the saga

The night Samara was born, I started coughing something awful. I was taken down to x-ray, and they found that my right lung had collapsed. The pain in my scar was horrific every time I had a coughing fit, but the physio's said I had to work at coughing it all up. The only thing that made me obey them, was I needed to get well enough to visit my little girl again! Finally, 2 long, long days later I got back to the NICU. By now, she was off the ventilator, and on CPAP, as shown in this picture.

You know, I hated being pregnant. The pain in my joints, the tiredness, the lack of sleep, being stuck within a 10 min radius of the hospital, etc. I just wanted it all over. But, you know, seeing her laying there so tiny and covered in monitors, tubes and machines, was pretty heart-wrenching. I felt so guilty for wanting it all over, and just wished so much that I could put her back where she belonged! Yet at the same time, I was totally besotted with this entire person that was laying there in this tiny little body. It was pretty fascinating really!

One thing they do with the little preemies, is insert their first IV line through the umbilical cord. Until this was removed at about 7 days, we wouldn't be allowed to hold her. But when she was 4 days old, I was standing next to her isolette crying. One of the nurses came over and said I looked like I needed a hug. She bundled her up in a ton of blankets, taking care to protect her UV line, and gave her to me to cuddle! What an awesome experience! But in all honesty, physically, it felt like I was just holding an empty bundle of blankets! She was lost in amongst them :)

Because Bryanna and Mahalia were born at 35 weeks, we had some experience of the various monitors, and tube feeding. For this I really am thankful - it made the whole experience a lot easier. Other mums were jumping every time an alarm went off - but I knew how to tell whether the alarms were false or not, which probably saved me from several heart attacks!

In the NICU, Samara earned herself the nickname of Feisty. She knew what she wanted, and how she wanted it. A trait that she still has! They had little pillows and supports that they would put around her to hold her in various positions that were to help with her development. Well, she was having none of that. She would literally re-arrange everything until she was happy, then plant her face against the matteress before going to sleep! Here she is giving Christiana a demonstration of how it's done!

After 27 hours on the ventilator, 4 days on CPAP and 3 days on increased oxygen in the isolette, Samara was finally breathing well at room levels, and was transferred to the Special Care Nursery. Not bad for only 8 days old, and 32+2 weeks corrected.

Here she is having a feed and a cuddle with dad in the NICU just after her CPAP came off. It was really nice being able to see her face (well, most of it!).

Once we got through to Special Care, we were asked to take place in the TIC trial they were conducting as part of the neo-natal research they do there. The trial involved babies who were born before 32 weeks, with no other known medical issues. It was to see whether babies did better when transferred from isolette to cot at 1800gm (the current standard) or earlier at 1600gm. The theory being that they may do better with more parental contact that comes with being in a cot. We agreed to take part, partially in the hopes of getting more cuddles!! At 1600gm a computer would randomly pick which part of the study she would be in. At 3 1/2 weeks she reached that first goal, as shown here. Unfortunately she wasn't selected to come out of her isolette yet:( But that's ok. The biggest disappointment was she was going to be too big for her first outfit by the time she did come out. So we dressed her in it anyway, for some photos and a cuddle with dad. It is a teddy bears onesie from Pumpkin Patch. It now belongs to her doll!

During those first few weeks, I was not without problems of my own. Firstly, at 2 weeks post-partum, I developed a kidney infection. It took a couple of rounds of antibiotics to clear that up. Then, a day or two after these photos were taken, I saw the GP again as I was still in a lot of pain. A scan was scheduled for the afternoon of 20 October.

The day of the scan I was particularly sore, so Michael took the day off work. We had already had a pretty hard week. The inteferring social worker at the hospital had managed to get us kicked out of Ronald MacDonald House because we didn't have a fixed address on the Sunshine Coast any more. I was really mad, cos I had been up front with them about it the whole time. We had even offered to pay our own way, if Nambour Hospital no longer felt it was their responsibility. But the social worker was treating us like we were trying to rip off the system to get free rental accomodation. Now, if you have ever tried to rent a house in Brisbane before, you will know it is not easy. Add to that the fact that we had 6 kids living with us, and it is darn near impossible. So here we were, with a couple of days to move out, and nowhere to move to. We had already arranged to borrow a friends house for a week while she was away, because Alicia was coming over from New Zealand, so we all wanted to be together. And, so it was, that this is where we were staying when the scan date arrived.

Anyway, I digress. Because I was in so much pain, Michael left me at our friends' place with the girls, while he went to the hospital to visit Samara and take her in some breastmilk that I had expressed. In the meantime I had a sleep.

At 1.30 he got back (1-3pm is quiet time, and no visitors allowed). He came and woke me up. I wasn't impressed. I wasn't sore when I was asleep, and my scan wasn't until 4.30! Anyway, he said we had to talk. The drs had told him they wanted to speak to us. You know, looking back, it seems really dumb. But my first thought was 'do they think we aren't doing a good job parenting Samara? Are we not there enough?' - really dumb - I was there nearly all day every day! But it goes to show that I was totally unprepared for what came next.

He said that they think she has Down Syndrome! Wow. That was totally unexpected. She was doing so well. She was lifting her head up when laying face down in the isolette. Aren't DS babies supposed to have weak muscles? They must have it wrong. Surely we would have seen it. She doesn't look it. Maybe they mixed us up with someone else. Maybe there was a mistake and she was swapped with someone else - yeah, that will be it. After all, I didn't see her for 2 days in the beginning, and she changed a lot in those 2 days, it's possible that all 3 name labels came off, and she accidentally got moved to someone elses isolette. Isn't it?? Where do they get off saying that about MY baby anyway? NOOOOOOO! Far out, I am still crying, writing about this nearly 7 months later!

As much as I HATE to admit it, I even thought for a very fleeting moment that maybe it would have been better if I had lost her right back at the start of my pregnancy when I had that bleed. How awful is that?! After 4 weeks of getting to know my perfect little baby, I was being told that baby wasn't mine after all. I was being given this defective model. I really felt like the Samara I thought I knew had died. I wanted THAT Samara back - not this imposter. To make it worse, I had considered adopting or fostering DS kids. And here I was rejecting the one God had given me. Boy did I feel stink. I couldn't fathom these thoughts that were going through my head. I guess it's one thing to choose to adopt a disabled child. It is quite another to create one. I felt so bad for her. It is not as altruistic to accidentally give birth to a DS baby as it is to adopt one. Gee, now I was realising that my ego was taking a bashing, and I was going along with it. But no matter how much I hated my selfish thoughts, I couldn't stop them. Then there was my grieving for the life Samara wouldn't have. I could only see her future as mopping floors for MacDonalds. No marriage. No children. No choices.

And yet, I know people with DS. I know how much better their prospects are these days. But I didn't know that those prospects are better than I thought. She COULD get married. She MAY have children. She CAN go to university. But back then, I had so much less knowledge than I thought I did.

Mum works in a group home for adults with Down Syndrome. They are lovely people. But I didn't want their lives for my precious baby. Of course, these adults were all born in a time when institutionalisation was the standard course for DS kids. There was no early intervention. Today's knowledge means her prospects are so much better.

I went to my scan at 4.30, still bawling my eyes out. They thought I might have appendicitis and sent me to the Emergency Department. Well, everyone knows what those places are like. The waits are awful. But I must give them credit. After telling them about Samara, they were more than happy for me to come and go, so I could get in some time with her during the waiting times. After 12 hours and a CT scan, they decided that it wasn't my appendix they were seeing, but a fallopian tube that had swollen to the size of the appendix. I was admitted to the maternity ward. One advantage of being re-admitted, is that you get your own room rather than sharing a room of 4 beds. So at least I had some privacy to do my blubbing!! It was also nice to be so close to Samara again. She was just 1 floor below me.

On the sad front though, I wasn't staying with Alicia any more and she was going to be going home soon. You know, the girls all took the news in their stride. They saw it as no big deal. Which is a good thing, but they couldn't understand what I was so upset about. It was probably a good thing I was in hospital, so they didn't have to see me in my grief.

Something I didn't know before this was that there a lot of health problems associated with Down Syndrome. Heart defects, thyroid problems, muscle weakness, breathing problems, low immunity, higher risk of leukemia, higher risk of coeliac disease etc. I wasn't really ready to cope with that knowledge. She had an echo done that day, which showed only a very small heart defect, that would not cause any problems. So that was a huge weight off.

Well, I am feeling a bit emotionally spent now, so will continue later......

Wednesday, May 13, 2009

The Australian Dream begins....

I have spent the past 15 hours or so reading the touching story of Kayleigh. If you have a box of tissues and a lot of time, be sure to check it out. Kayleigh was born 12 weeks early on 23 June 2008 - exactly 3 months before Samara was born. Yesterday, she lost her fight for life.

Reading Kayleigh's blog has shown me that a blog is so much more than a journal. It has the potential to reach others. To help them through their own journeys in life. I have certainly been touched by this little girl who I didn't even know existed 24 hours ago.

While our journey hasn't been as heart-wrenching as the Freeman family's, it has been a difficult year. A good year too, but interspersed with a lot of anguish and whys. Maybe, by sharing our story here, someone else can be helped.

Please bear with me as I catch you up with the journey we have been on over the last 22 months. It may take me a while to catch up, but bear with me a while...

First, a quick intro. Michael and I have been together since high school. Our first daughter, Alicia (now 20) was born when I was just 19. Over the next 10 years, we had another 5 girls. Sara (17), Renata (16), Christiana (14), Bryanna (12) and Mahalia (10).

We have had our fair share of health issues along the way. Alicia spent most of her childhood in and out of hospital with asthma. Sara was a near-miss cot death, who had her first apnoea (stop-breathing spell) at 6 weeks of age. She was on a monitor until she was 11 years old. Renata was born with a small VSD (hole in the heart), and was in the NICU at 2 weeks with pneumonia. At 10 years she was diagnosed with Aspergers Syndrome, ODD, and Dyspraxia. Christiana is pretty healthy! YAY! Bryanna has Learning Difficulties, and most probably Aspergers Syndrome. Mahalia spent the first 2 years of her life very sick with breathing problems. She was on nebulisers 4 times a day. Then, at 2 she was diagnosed with multiple allergies. We modified her diet, and haven't looked back. Today she is able to eat a normal diet with minimal problems. Christiana, Bryanna and Mahalia were all preemies (36, 35 and 35 weekers)

All of our girls are/were homeschooled. We are a Christian family, and this is where my hope springs from that we can reach out and help others. Until 2008 we lived in our homeland of New Zealand. And this is where this journey begins....

July 18 2007. Renata, Christiana, Bryanna, Mahalia and I arrive at Brisbane airport. We have just embarked on a totally new and unknown journey. Michael and Sara have stayed in NZ another 4 weeks to finalise the house sale and finish up at work. We are going to stay with friends in a small town 4 hours north of Brisbane. Michael has no job to come to. All we have is a container full of stuff from NZ and some money from our house sale. We use this money to buy a caravan and a bus. This will be our home until whenever......

After 4 months with our friends, things were getting a bit strained (as things do when you throw 2 families together like that!). We need somewhere to go, but know no-one. The engine on our bus had died, so we couldn't even go on the road. We had thought Michael would have found a job by now. But we have no money, nowhere to go. I lost it at that point. But only for a couple of hours. The one thing we did know, was God had told us to move here, and he would find us a home. Through friends of friends, we had found somewhere to move by the end of the day. And so, the following week we moved a couple of hours down the coast.

During the 4 months we were there, Michael found a temporary job on the Sunshine Coast. So we found ourselves a rental house and for the first time in 8 months lived in a real house! We no longer had to stomp our feet and wave torches around watching out for snakes, spiders and toads on the way across a field to the toilet!! (Believe me, that was the biggest plus!)

2 weeks later, on Easter Weekend, I found out I was pregnant! After 9 years, it was a bit of a shock, but a happy one. At least, until the hyperemesis set in! The main thing I remember from that time was curling up on the floor of the public toilets at Nambour Hospital, for 5 hours while waiting to be seen. Not a good look! I had a scan at 10 weeks, and everything was looking good.

At 13 weeks I had a bleed. I was pretty terrified and rushed off to the dr. He thought maybe I had placenta previa. I had that with Sara, but it moved out of the way, and wasn't an issue. I figured that would be the case this time too.

WRONG. After another bleed at 17 weeks, I had a scan at 18 weeks. I was diagnosed with grade IV placenta previa. In my case, this meant that the placenta was sitting right over the cervix, and an additional 3.5cm over the other side. The OB told me there was no way I would be having this baby naturally, and would probably have a preemie, with my history. I was put on moderate bedrest, so spent my time surfing the net for info on placenta previa and premature birth.

At 26 weeks I had a bleed, and was admited to Nambour Hospital. (I should mention here, our lease on our house was up the next week, so we were in the throws of moving too!) I was given steroids to strengthen the babies lungs. The next night I had another bleed, so was put in an ambulance and sent down the the Royal Brisbane Women's Hospital.

I spent the rest of the night alone in a freezing cold birthing room. Not knowing if my baby was about to be born, or even where there was a midwife or dr if I needed them! Needless to say, I got to morning, and they transferred me to the maternity ward.

With the move coming up, Michael was too busy to get down to me straight away, but somehow, he managed to organise some help with getting the house sorted, and thankfully we had arranged storage for our stuff just a few days before. Our plan had been to rent a holiday house on Bribie Island just north of Brisbane while we tried to find a new house (by this time, Michael was working in Brisbane, and had been catching the train down each day). Then I was told, that I would not be going home for some time yet. On the Monday (the day we had to vacate our house) I would be transferred to Ronald MacDonald House until the baby arrived. And, to make things worse, they could only take Michael and I. They didn't have a bigger room available.

Suddenly we had to find homes for 5 girls! After some desperate phone calls, we arranged for 2 of them to go to our friends we stayed with when we moved over. The other 3 went to another friend who we had only just met. Thankfully we had gotten to know them well, and they were friends of friends. We cancelled the holiday home, and became officially homeless!

The next few weeks went by without too much trouble. Well, except that my weak joints were playing up big-time and I was in braces for my wrists, ankles and knees! A C-Section was scheduled for 34 1/2 weeks to try and avoid the risk of going into preterm labour at 35 weeks again. A scan at 30 weeks (see picture) showed that the baby's growth had slowed. Not enough to be alarming, but enough that it might mean moving the birth up to 32 weeks if things didn't improve.

Turns out that was a pointless worry. At 6am on 23 September, at 31 weeks and one day, I had a massive bleed. It took 5 minutes for a crash team to get to Ron's house. By then I was passing out from blood loss. You know on TV how they slap people across the face and tell them to stay with them? Well, they really do that!! LOL Anyway, the Ambo's arrived a few minutes later, and I made the massive ambulance trip 50 metres down the road! By the time we got to the hospital, I was going into labour. A decision was made to do an emergency cesarean. I was knocked out, and woke up several hours later, after a couple of blood transfusions. The first thing I thought when I woke up (having had 6 natural but excrutiating births) was 'why on earth would anyone choose a cesarean? It hurts like ^$%#!' Not a pleasant experience.

Anyway, Samara Eliana was born at 10.21am weighing in at 1500gm (3lb 30z). She was not breathing so was bagged, then ventilated and taken to the NICU. It wasn't until 4pm that I was vaguely with it enough to fake being well enough to go and see her! She was so tiny. Just like a little doll. The photo really doesn't do justice to her size. Her head and trunk could sit in Michael's hand with her legs hanging off the end. She is also looking plump here - this was just fluid, that drained over the next day or so, leaving her all skin and bones! This picture was taken by the NICU staff just after she had been set up with all her monitors etc.

To Be Continued...................

Monday, May 11, 2009

The weekend

Well, I missed out on going to Movie World with the rest of the family, cos I had awful sinus pain. But apparently Samara had the time of her life going on rides and stuff. She got all hyper and tried to tell me about it when she got home. She was babbling away and all excited. It's amazing how good she is at expressing herself!

Sunday was Renata's 16th birthday, as well as mothers day. Renata had entered a competition to win tickets to the Jonas Brothers 3D Experience movie, and won 4 passes. So I took her, her friend Rebecca, Christiana and Mahalia to Chermside Megaplex to watch that, while Michael and I went shopping for scrapbooking stuff (mothers day present!)

Got home to find that Bryanna had taken Samara for a walk to the neighbours in the new dolls pram. She looked so cute!

Today has been a slow one, with me just updating my photography site, and catching up with people online. Samara is a bit tired today. She slept til nearly lunch time! Mind you, she fed heaps and heaps last night! She wasn't particularly keen on doing her physio today either. Didn't even lift her head during tummy time, and just lay there when we were doing the rolling over exercises. Hope she's not coming down with something.

Tuesday, May 5, 2009

Some Random Bits

Today I bought something I have always wanted. A Silver Cross Classic Dolls Pram. Now, you may be thinking I am too old for a dolls pram. But that's why I had so many girls!! And now, with the possiblility that Samara will be into her dolls for ever, I have finally gotten my chance!! I got it off ebay, and will pick it up on Saturday. Now, does anyone know how I can put a smiley of the happy dance on here??!!

Bryanna had a dressing changed on her burnt hand today. It is so horrible to watch. They scrub off all the old skin, and it really hurts her. On the good news front, she is no longer in a splint, and just has a bandage now. It looks like it is healing well, so hopefully she won't need ongoing treatment.

Samara did her first drawing today! Renata gave her a pen and held a pad in front of her. She didn't take long to figure out what was happening! You should have seen her. She was concentrating so hard, and was not amused when it was taken away. I have kept the picture to put in her scrapbook.

I find it totally amazing how quickly Samara catches on to things. She has sussed her musical cot light thing. Within about 10 minutes of getting it, she had learned which button turns it on. Now when she wakes up in the morning, the first thing she does is leans over and turns it on! The other day we bought her one of those suction cup rattles that sits on the tray of her bumbo seat. She was so funny. She batted at it, then sat back to watch what it did. But it stopped moving as soon as she stopped batting! It didn't play music, it didn't flash lights. She looked at me as if to ask what was wrong with it. I guess you could say she is definately a child of the 21st century! She even tries to get the spoon of whoever is feeding her. It goes straight in her mouth too. She is such a clever wee thing. I find it hard to accept the fact that she is likely to lose that. I am hoping that the Nutrivene D helps to at least reduce the damage she is likely to suffer.

I have been doing a bit of research, and may look at starting her on the Changing Minds protocol. This involves her taking Ginko and Prozac. It is supposed to help build neurons in the brain. I'll have to keep looking into that one. May discuss it with the GP and see what she thinks.

Anyway, the crime shows are starting. Which means I'm outta here!

Why Bloggers Syndrome?

These days, it seems like everyone has a syndrome of some sort. So I figured, why can't I have one too?

After years of having Chronic Fatigue Syndrome, I decided it was time for a change. So now that I have somewhere to put all my ramblings, Bloggers Syndrome it is.

Speaking of Syndromes - we've got our fair share of those too. Renata and Bryanna have Aspergers Syndrome. And Samara has Down Syndrome. Sara was a near miss for Sudden Infant Death Syndrome (SIDS). And the females in my family (me, the girls, my sisters, mum, aunts etc) all have Ehlers-Danlos Syndrome (20 points if you can figure THAT one out! LOL).

As an intro to those who don't know us (yet), my family consists of me (Carolyn), dh (Michael) and our 7 beautiful daughters - Alicia, Sara, Renata, Christiana, Bryanna, Mahalia and Samara (our only 'Aussie' who was born in Sep 08 at 31 weeks). We live near the beach in Brisbane, QLD, Australia.

We are a homeschooling Christian family. We moved to Australia from New Zealand in July 2007. Michael is a computer geek, and I am a SAHM, and am just starting out on a new business venture - Special Needs Kids Photography. I am pretty nervous about it - I've never been one for much self-esteem. But the one thing I do know is that I love working with these wonderful children.

I will try and pop in regularly. Not sure if what I write will be of any interest to anyone, but hey, at least I can come here to gripe rather than to my family ;)