Wednesday, October 21, 2009


I have just copied and pasted this from DSDU. It was written late Monday night so the dates don't fully match up, but those of you in America won't notice that anyway LOL.....

This time last year, we were enjoying our tiny new addition. She was 4 weeks old, and had progressed well from the Intensive Care Nursery, to Special Care. She was now 35 weeks gestational age. All was going well with her. We were just fattening her up ready to come home.We were blissfully unaware that our lives were about to change dramatically.On October 20 2008, we were delivered the blow that is Down Syndrome. We had absolutely no inkling that it was coming. We hadn't had time to duck, or even to flinch. We were hit full-on in the face with the news that our child would never be who we thought she was. At the time, it felt like a death. I felt like they had taken our baby and replaced her with someone else. Looking back, I still see the 'before' pictures as if they were before she had it. Dumb I know. But that is the effect that this late diagnosis left me with.The year since then has brought with it many ups and (no pun) downs. We have met some great people. We have had some good times. We have learnt some valuable lessons. And above all we have had the opportunity to get to know the most amazing baby.But there has been more than her share of sickness. More time spent in hospital than I care to remember. And many tears for the opportunities she may never have. I can't say I have a lot of love for that extra chromosome. I don't like the way it makes her so sickly. I don't like to see my baby struggle. And I don't like how every new thing she learns comes at such great effort and cost. But there is something special about that extra chromosome too. My appreciation for my children, for life, for others has grown beyond what I thought possible. And as she has grown over the last 13 months, I have seen a beautiful personality emerge. One who I would never have known, had it not been for that something extra.So it is a bittersweet memory. That day last year was the hardest of my entire life. But all is not lost. I still have my precious baby girl. Something that cannot be said for so many parents of children who are born with an extra 18 or 13. We were lucky. The 21st chromosome is the one to have if you are going to have an extra.But, I am sure I will cry. I will cry for the sickness she suffers. I will cry for the difficulties she faces. I will cry for the hurdles still to come. But then I will move on. I will remember to be thankful for one of the greatest blessings I have ever received.

Wednesday, October 7, 2009

Sometimes I really hate that Samara has DS

Today, Samara starts her 4th day in the hospital. All she has is a regular cold. It's a nasty one - it has knocked the rest of us down a bit. But for Samara, a cold is not just a cold.

Initially, Michael took her to the hospital on Friday evening. When she was sleeping, her oxygen sats were dropping. Unfortunately, he made the mistake of waking her up. She could cope when she was awake, so her levels were at 96% when he got up there. So they sent her home.

Saturday evening she was getting worse. So at 2am Sunday morning, we took her back up to the hospital. Lack of sleep over the last few days has made everything blurr into one. But, they decided to admit her as her O2 levels were dropping, and they needed to suction her and give her a bit of oxygen.

Overnight Sunday night they just had her on 4 hourly obs. Which meant, once every 4 hours, they would come in, half wake her attatching the probe, and write down the highest number they got. Now, as I mentioned before, being awake or disturbed causes Samara's to take deeper breaths, and her oxygen levels rise. So really they are getting a false reading. Anyway, after her not 'needing' oxygen overnight, she was sent home Monday morning.

We left just in time to drive straight to the Royal Childrens for her opthomology appointment. The good news, is her eyes are great!

Anwyay, I digress. She got worse again Monday night, so once again, we headed off to the hospital at 2 in the morning. And once again, they put the probe on her foot, and got a reading of 97%. The triage nurse is one we have had a few times now. She is really lovely, and really listens to us. So when she went to record the 97%, I told her to just wait a minute. And sure enough, as Samara relaxed, her sats dropped to 82%!

Being the lovely lady that she is, this nurse then triaged her at a 1 (the highest priority) and took us straight through to resus. She told the dr 'this mum has 7 kids. She probably knows more about this than you do. Listen to her!' Well, that made all the difference. Samara was admitted with continuous O2 monitoring.

Since then, she has worsened. She is now on constant oxygen, as her levels were dropping even when she was awake. She is completely miserable. They are suctioning her nose before each feed, or she can't breathe enough to drink. Even then, it is a long slow process. She is starting to get dehydrated. She may go onto tube feeds today - we will have to wait and see. Her nose is bleeding due to the repeated suctioning.

Because of our family history of asthma, and because yesterday she developed quite a wheeze, she is now also on ventolin by nebuliser. Yet another contraption to hate having near her face. She fights it all the way. She also keeps pulling out the oxygen probes. And we won't even mention the difficulties when the nurses are trying to stick a suction tube up her nose!!

Michael is staying with her at the hospital. He can sleep through anything. Not me though. I tried to sleep there after she was admitted yesterday morning. But with all the alarms and things, I didn't do any more than drift off for a few minutes at a time. So last night I got my first real sleep since Friday. But my body isn't used to sleep any more. I woke up at 4.45, and here I am typing my blog when I should be catching up on some sleep.

But I can't sleep. I am worried about my little girl. What if she gets worse. Last night she was still going down hill. Is she still? Or is she about to turn the corner and get better? Does she need me there right now? Is she awake and crying for her mummy? Or is she sound asleep? Does Michael even know? Has he slept through her having a bad night? I feel guilty for needing to sleep. I feel guilty because my house looks like a cesspit. I can't believe we had it looking really good on Saturday for a rental inspection. Now, it is just filthy! The girls aren't doing their jobs. They won't even touch the dishes! I am tired. I can't cope with this. If I am up and about, then I need to be at the hospital for my baby, not trying to kick some kiddy butts into doing the basic jobs that need done. The girls are old enough to keep things running for a few days. But it's really a waste of breath trying. I think after this is over, Renata will be moving out to the bus. She just doesn't pull her weight. The others then follow her lead.

On the plus side, I have a good friend, Deb, who has taken Christiana and Mahalia for a few days. She has been onto the girls to do what they are told. And she has also been bringing food up to the hospital for Michael and I. I don't know what we would do without her. We are completely broke (as in, had to borrow all Sara's babysitting money just to buy Samara a tin of formula) this week, so we just would have starved without her help! We just had to fork out $900 for a container and then to ship it, to store our stuff in, that has been living up in Childers since we moved here. The people who's property it was on needed it moved. So really, we had no choice and had to just do it, despite it meaning we would be left with no money. But why now??!!

On Saturday, Sara, Samara and I are supposed to be going down to the Gold Coast for our DSDownunder get together. We are going for 5 nights. I really hope and pray that Samara is well by then! I am just going to cry if she isn't. On the plus side, at least we get some pay on Friday so we can afford the diesel to get there! LOL

Well, now that I have had a bit of a vent, I am really loosing it tiredness-wise. I am going to try and catch a couple more hours of sleep before I have to go back to the hospital.