Five

Five years ago today, I was sat in a hospital room in the city getting to know this little bundle they had handed me.  There are some distinct moments I remember from her birth like it only happened yesterday.  When I finally got to hold this baby of mine, I was in awe.  I was in love the moment I looked at her.  I also didn’t know how to hold a baby or swap from one arm to the other so I sat there for an hour with a dead arm till Dan returned and showed me how.  That little baby made me a mother.  She has taught me so much along the way.

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I always joke that she came out in her own way and her own time, giving us a glimpse of her future personality.  There is no hurrying Alyssa, there is no getting her to do things in any way but her own.  She is strong willed and opinionated and yep, she is stubborn.  But at the same time, she is kind, and loving, and loyal.  She is sassy and bold and confident.

I know I don’t always get everything right with her, I shout and lose my patience, but then at the end of the day, when she curls her arms around my neck and whispers I love you, I figure I must be doing ok.

Today, she turned 5.

Happy birthday my darling, beautiful girl.

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The future

So I’m kind of resurrecting my little old blog from last year but don’t worry it is not going to be another photo a day thing.  In fact, I’m not sure where this blog is heading. After I finished my photo a day project last year, I was going to keep this blog going and post periodically about our family’s going on’s, particularly so family and friends overseas can keep up to date.  But with the arrival of Charlotte,  I’m thinking I might use it to share some information about Down Syndrome, although I don’t want it to just be an advocacy blog for Down Syndrome (DS), because for one, there’s still so much I am learning about it too.  So I will probably share some things along the way, just as I’ll share things about other things going on (like a certain girl about to turn 5 and starting school very soon).  I think I will share information about DS because I know there are some people in our lives that don’t know what to say or who may feel sorry for us because the knowledge they have of DS is old and out dated (don’t worry, I knew diddly sqaut about it really, like did you know that whilst women over 35 are at a higher risk of having a baby with DS, more babies with DS are born to women under 35, which is where I sit, and there I was thinking we were all good because I was low risk.  It’s all a numbers game).

I am very positive about Charlotte’s future and I sometimes wonder if people think I’m being naive because of what they may think they know about people with Down Syndrome.

I want to share this blog post because it shows that I am perfectly right to be positive for the future and expect that our baby girl can do great things. http://www.kellehampton.com/2013/05/the-world-lies-upward.html

(Incidentally, that blog has been on my reading list for a long time, way before DS became such a personal thing for me).

This one extra chromosome Charlotte has brings with it a huge pile of unknowns.  This is a new path we are walking, and I often feel that I’m treading it without a map.  But, at the same time, I have high hopes that leaving the path that I knew and following this new one is going to be a worthwhile journey, even if its going to be more challenging.

When your children are born, you have these ideas and visions of what life is going to bring with it.  You model them on things you know, things you’ve done and experienced during your own life: dancing, playing sport, school, uni, work, marriage.  But at the end of the day, each child you have is an individual.  They are more than likely going to throw a curve ball at you somewhere along the way and do something completely different to what you were expecting.  Alyssa is more than likely going to forego hockey for dancing.  Bailey might do an apprentice trade after school, not uni.  Neither of them might get married or have children.  And so, as your parenting journey goes on you have to reassess and rethink what you want for your children.  And at the end of the day, you want them to be happy and healthy and good people, and you want them to achieve something in life (which doesn’t have to have anything to do with being rich or driving a flash car).

Charlotte’s curveball has come a bit earlier.  But…

I am determined to hold high expectations for Charlotte to achieve great things to her potential.  There are going to be more challenges along the way and Charlotte may have to work harder than her siblings and peers, but we’re going to be her cheersquad, backing her all the way.  And when I read stories like the one in the link, I am hopeful for her future.

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And though she be but little she is fierce

(Shakespeare, A Midsummer Night’s Dream)

Keep calm, it’s only an extra chromosome

One thing I haven’t mentioned so far is the results of the amniocentesis at week 28.

At week 30, I was in having some monitoring done and was asked to go and see one of the doctors from the maternal fetal medicine unit (the doctor we had been seeing was interstate).  I guessed that it was going to be the results of the karyotyping.

The baby was most definitely a girl.  And she had an extra copy of chromosome 21.  Down Syndrome.

Even though we were high risk (1 in 57) and I felt like we were prepared for this result, it was still a shock.  I felt like I had been hit by a bus.  I kept telling myself that my world hadn’t ended, it had just changed the angle it was rotating at. I phoned Dan, and after a minutes silence, he said “well, now we know”.  We were both stunned and unsure.

I later texted a very good friend, who told me that it would be ok and that our baby would be perfect. Another good friend overseas told me that this baby would still bring joy and love to our life and would still be perfect.

Oh how right they were.

Dan processed and came to terms with the karyotyping quicker than I did.  I felt like I was grieving.  I was upset that I wasn’t getting the baby I thought I was and for the future that I thought I had lost.  I didn’t know what the future was going to look like for us now.  I was scared of the challenges she would face and I was scared that I wouldn’t be good enough.  I didn’t want this diagnosis but I worried that the baby would think that I didn’t want her, which was never the case.

As the weeks went on, my fears began to fade and whilst every now and again, I would catch my older two children doing something, and wondered if this baby would do the same, I began to believe what my friends had been telling me.  It would be ok, it really would.

And it is.  We’ve faced a major hurdle, one in which we may not have met our little girl and we’ve come through the other side.  I know there will be challenges, but we’ll deal with them when they happen.  For now, I’m going to love on our baby girl and soak in all her newborn goodness.

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And like I said way back in my opening paragraph, she is perfect and beautiful and very much loved.

 

The story of Charlotte Rose Part III: NICU

Charlotte spent just over a week in Intensive care, on hi-flow oxygen to help her lungs inflate.  A chest x-ray showed remnants of fluid, but her chylothorax had cleared up in utero.  An echo-cardiogram showed that she had a PDA (apparently, this is a small hole between the chambers of the heart that all babies have and that closes up after birth- hers was slow to close), but they weren’t too concerned.

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day 1 

We quickly realized that in NICU, it was often a case of a couple of steps forward and then a step back.  But slowly, things began to improve.  By the middle of her 2nd week, she was moved to special care and by week 3, she was taken off the oxygen support.  Her only issue then was with her feeding.  She wasn’t tolerating her feeds very well, and she went backwards and forwards from hourly tube feeds to 3 hourly back to hourly and back to proffuser feeds; where a pump continuously pumps milk through the tube at a slow rate.  But by the end of week 3, the doctors decided to challenge her with three hourly feeds and she began to tolerate them more.  Her growth was still an issue, as was establishing suck feeds.

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By week 4, she was well enough to come home, but her feeding continued to be an issue.  A doctor mentioned the possibility of her coming home on a naso-gastric tube and I clutched that idea and asked the doctors every day if we could do that.

4 weeks in NICU was taking its toll on our family.  I was tired, from the driving to hospital, juggling the other two kids and expressing three to four hourly so that Charlotte could have breastmilk.  The kids were over being left at Nanna’s all the time.

Just a little over 4 weeks and we were given the go-ahead to take Charlotte home with a feeding tube.  In the end, she spent 30 days in NICU. Given what we had been told during our pregnancy, she far exceeded all our expectations and we really feel like we had the best possible outcome.

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last night in hospital

The story of Charlotte Rose part II: her arrival

The day I hit 36 weeks, I decided to head into the hospital for a bit of monitoring.  The baby had been on the quiet side for the last day or so, and I was worried.  But of course, they hooked me up to the machines, and the little one started performing back flips.  They asked me to go back the next day and again, she was all happy.

 At 36 weeks and 2 days, we went out for dinner.  After wards, I felt a bit sick but assumed I had eaten too much.  My lovely Nanna commented that babies often go quiet before they arrive, and she wondered if it was almost time.

 I woke up during the night, and couldn’t sleep.  It was a stinking hot night, and so I went to lay down on the sofa with the air conditioning on.  I realized I was getting one or two contractions an hour, but thought nothing of it, having read everywhere that pre-labour was common in a third pregnancy.

 Sometime around 5am, I went back to bed and woke up about 7.  Everyone else was still asleep, and even though it was a kindy morning, which meant I should have been getting everyone up and moving, I sat enjoying a cup of tea, and thinking to myself, that I would enjoy the peace as it could possibly be my last moment of quiet.

 By 7.30am, I realized that my prelabour was getting a bit more serious.  And when I had a ‘pain’ that I needed to lean on the wall and breathe through, I mentioned to Daniel that maybe it was the start of something.  He began to time my pains, and at this point they were 12 minutes apart.

By 8 o’clock, Dan had made the decision to stay home so we could head in to the hospital to get checked out.  At this stage, I was still thinking it was pre-labour and I would be sent home.

 We dropped Alyssa at kindy, and as I waited in the car with Bailey, I had another contraction. They were now 6 minutes apart.  I phoned the hospital just to let them know what was going on, and that we were coming in, but that I expected that it was just prelabour.  As I hung up, another contraction began and I started getting vocal.  Bailey coached me from the back seat, telling me “you ok mummy”.

 We arrived at my Mum’s earlier than planned (they weren’t having Bailey until mid-morning) and as Mum opened the door, I said that I was having contractions and we were going to head to the hospital but they would send me home.  I was still in denial.

 I went to the toilet and then something just changed.  Things got very real.  I headed back outside and had to lean on their garden wall. Mum mentioned about phoning for an ambulance as I wasn’t sure about getting in the car, but I didn’t want to make a fuss, and Dan and I still thought things were a way off.

 As I tried to get in the car, I had three massive contractions back to back, and Mum shouted at Daniel to get an ambulance (she may have swore in there).

 I went back to leaning on the wall, and told them no way was I going in the house.  I was happy right there, even with the fencing guys over the road trying their hardest not to look.  Dan was on the phone for what felt like an eternity, but in fact was 9 minutes, and I didn’t understand why he was still talking, shouting at him to tell them to hurry up with the ambulance.  I didn’t understand that they would keep him talking until the ambulance turned up.  He was also giving Mum instructions, and out she came with blankets and safety pins.  It didn’t sink in that the operator was getting things ready for a birth.

 Finally the ambo’s turned up, and Dan started to fill them in on our history. And I told them that I felt like bearing down. Apparently, the two paramedics just looked at each other, and quickly got me on the bed.  They lifted me up into the ambulance just as another contraction hit and I think I swore for the first time.  One thing I learnt in my other births was that I hate lying down, so to be strapped to a bed was a nightmare.  I begged for something and they gave me the green whistle, which apparently they showed me how to use and I spat it out as it was too strong, so I didn’t get the full effect of the pain relief.

 Because of the potential problems with the baby, we had a second ambulance meet us on route and follow behind us.  To begin with, the plan was to still take us to the city hospital, but after about 10 minutes, a decision was made to divert to the nearest main hospital – the one that I should have birthed in originally.  I think the paramedic was worried as I kept telling her I wanted to push.  Instead, I kept breathing with the green stick and tried my hardest to ignore those urges. She kept checking, and each time would say that she couldn’t see anything.

 We would have been no more than a couple of minutes away (by ambulance) from the hospital when all of a sudden I couldn’t fight my body any longer, and in one push, my waters broke, the head was out and then there was a baby lying on the bed.  The paramedic had no time to put down her notes and catch the baby- all she could do was yell “pull over”.

 Charlotte Rose came out crying at 9.45am.  She was quickly placed on my chest, and Dad got to cut the cord.  As we were so close to the hospital, I got to hold my baby for the 2 minute drive.

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 We were met by a NICU team, who triaged her.  Whilst she was breathing, she still needed some oxygen support, so once they had done a quick check over, she was off to NICU and I went to labour and delivery.

 After I was checked over, and had a shower, I was wheeled round in a wheelchair to meet our baby properly.  By then, she had been hooked up with all manner of wires and tubes.

The Story of Charlotte Rose

This is the story of our third child: my pregnancy with her, her arrival and her first few weeks.  And I’m going to start at the end.  Charlotte is now 6 weeks old.  She is beautiful, and perfect and oh so loved.  Her arrival has changed our family dynamics yet again, and yet she is a perfect fit for this family.

 I’m writing our story down as a way for me to process what we have gone through and also to let our friends know what’s been going on.  But mainly so that if another family find themselves in a similar situation, they can read our story and have hope that everything may be ok.

Part I: the pregnancy

 We had always talked about 3 being the magic number for our family.  For a while, we toyed with the idea of staying at two, probably somewhere in the never-ending sleepless nights that we had with Bailey.

 With only 20 months between Alyssa and Bailey, I felt that we needed a bigger gap for my sanity’s sake.  So once Bailey had turned 2 and Alyssa 4, we decided it was the right time.  And yet again, we were blessed in falling pregnant first shot.

 The first trimester passed slowly with constant nausea and exhaustion, but we hit 12 weeks and things sped up.  All of a sudden, we were having our 19 week morphology scan.  We took Alyssa, who was very excited to see the baby.  Everything looked good to our eyes. We weren’t finding out the sex, we never have with any of our pregnancies and besides, we already had one of each, so this baby was a bonus either way.

 And then the sonographer said the words that no one wants to hear: “I’m just going to get the doctor to take a look at one of the measurements.”  In came the doctor, who had a second look, he told us that the nuchal fold measurement was larger than it should be.  He then led us to a room to wait whilst he went to get an Obstetrician to come talk to us.

 The obstetrician told us that the nuchal fold was around the 9mm mark, when it should be less than 6mm.  And, within the nuchal fold was something called a cystic hygroma – a pouch of fluid from the lymphatic system.  There were a few things it could be caused by and we were referred to a Maternal Fetal Medicine Obstetrician. But we couldn’t see her until Monday morning.  It was Wednesday afternoon at this point.

 We spent the weekend stunned and trying to stay away from Dr Google.  Monday morning we met the lovely MFM doctor, who explained in more detail the three most likely causes of the cystic hygroma: it could have been due to an immature lymphatic system, which would most likely resolve in time; it could have been because of a chromosomal abnormality; or it could have been something called hydrops, which basically means fluid where it shouldn’t be.  If it was hydrops, more fluid may have developed around other organs and parts of the body over time.  If it was the chromosomal abnormality, the most likely culprits were a trisomy (of which Down Syndrome is one) or Turner’s Syndrome, but it could have been another abnormality.  I suddenly went from having odds of 1 in 900 of the baby having Down Syndrome, to 1 in 57.

We discussed but declined the offer of an amniocentesis.  We would not act on the results, and so felt it was not worth the risk to the baby, something our doctor fully supported us in.  She arranged frequent monitoring, and extra scans.  We had weekly appointments with her for the first few weeks, and by week 24, we had been given the all clear from an echo-cardiogram scan of the baby’s heart and another scan showed that the cystic hygroma seemed to be reducing in size.  Everything was looking great, and with Christmas upon us, it was decided that we would not have our next scan and appointment until 28 weeks.

A couple of days before our appointment, I started to get a little bit worried.  The baby’s movements didn’t feel right, and were quite reduced.  As we had the appointment scheduled, I let the though sit at the back of my mind, and hoped that the scan would show that I was worrying about nothing.

Our 28 week appointment clashed with Bailey’s post-operative appointment with the ENT in the city, so we arranged for Dan to take Bailey to his appointment and Mum accompanied me to help with Alyssa.  Both of them were really happy to see the baby on the screen, but I just had this feeling that something was off.  I was heading in to see our obstetrician, and not wanting Alyssa to be present if it was bad news, I sent her and Mum to the duck pond to wait for me.

I sat down in the doctor’s office and she told me that she wanted to deliver my baby.  The very next day. I was only 28 weeks and 4 days along.  I knew that it wouldn’t be good. I burst into tears, and after a hug from my lovely doctor, she briefly explained why.  The baby’s lungs were full of fluid.  She sent me home to get Daniel and pack my bags and we arranged to meet her later that afternoon and she would go through everything.

But our baby must have a guardian angel or something watching over her, because whilst we were gone, the doctor decided to ring a colleague at the main birthing hospital in the city, who referred us to the head doctor in the maternal fetal medicine department over there.  I got a phone call from our doctor telling us of a change of plan.  This doctor was expecting us that afternoon to see if he could drain the fluid off whilst the baby was still inside me and hopefully buy us time to keep the baby in for longer.

We met the new obstetrician and he took us straight to an ultrasound room.  He didn’t waste any time in taking a closer look at what was going on with the baby.  He explained that the main reason our doctor at the first hospital wanted to deliver was due to a lack of blood flow back through the cord to the placenta caused by the pleural effusion (the fluid on her lung).  The baby’s left lung was so full of fluid that her heart had been pushed way out of position, so the aorta and arteries at the top of the heart were being pushed out of line, which was pinching them, and the heart was having to work haps harder than it should be.  At that stage, the blood flow around the body was ok, but she was showing signs of heart stress.  He didn’t want to deliver – if we delivered, her lungs would not be able to inflate because of the fluid in the cavity and she would not be able to breath, and they would have trouble ventilating her until the fluid was drained.  He felt that if we delivered at that moment in time, it wouldn’t have been a good outcome for our baby.

 As scared and upset as we were, there really was no choice but to drain the fluid to try and save our baby. The procedure took less than 10 minutes and the relief on the baby’s heart was immediate.  He removed 80ml of fluid from her left lung.  He also suggested that he do an amnio whilst he was doing the procedure and we agreed: it was already invasive so we might as well try and find some answers to what had caused the build up of fluid.

I was admitted to the antenatal ward that night for the foreseeable future. I was given two doses of steroids overnight, to help mature the baby’s lungs, just in case we still needed to deliver.

Our new obstetrician arrived early the next morning to do another scan and see how things were looking.  The bad news was the fluid had accumulated a lot quicker than the doctor would have liked.  The good news was that the blood flow through the cord had improved. The doctor commented that she must be tough and was pretty resilient.

It was decided that rather than drain the fluid with a needle like the previous day, he would place a stent into the baby’s lung cavity to drain the fluid continuously into the amniotic sac, to prevent it building up again.  The procedure had an even higher chance of causing me to go into pre-term labour or the baby to go into distress, so it was carried out in theatre, under sterile conditions and I was prepped ready for a caesarean, just in case they needed to put me under and get the baby out quickly.  I was freaking out laying on the table, praying that the procedure would work.  At the time, I was too scared to appreciate how amazing modern medicine is but I am so glad that in a situation like ours, they were able to do something to keep our baby baking and give her every chance for a more positive outcome.

They tested the fluid, and it was lympathetic fluid, and the pleural effusion was classed as a chylothorax. Her lympathetic system was immature and so not draining the fluid itself, and was causing it to build up in the lungs.  The most likely cause of this was a chromosomal abnormality (gosh I hate that word) so we waited for the results of the amnio.

 I spent another 6 days in hospital, as things with the baby stabilized and her blood flow through the cord returned to normal levels.  I was scanned each day, and each day, I was grateful that we had gotten that little bit further with the pregnancy.

The day I was discharged, I chatted with our Obstetrician and he didn’t think there was any reason why I couldn’t have a natural birth or why, now she was stable, I couldn’t get to term.  He told me that babies born at 32 weeks had excellent outcomes, and so that was my goal.

For the remainder of my pregnancy, we had weekly scans.  I drove around with a bag packed in the back of the car, and each time we met with the doctor, I expected that to be the day he told us he wanted to deliver the baby.  And each week, she was stable.  There was no more sign of fluid and she was growing nicely.

By week 33, both the doctor and the sonographers were having difficulties finding the stent.  But she was lying deep down on that side and so it was assumed to still be there as there was no reacculamtion of the fluid.

During week 34, we met with a neonatologist, who went through some likely scenarios.  They were pretty certain we were in for a NICU stay, but it could be anything from weeks to months.  Best case scenario was that the chylothorax would resolve in utero, worst case, they would have to put a more permanent drain in once she was born whilst they waited for it to clear.  She would most likely need breathing support, which could be just through nasal prongs, but there was a possibility that she would need to be on a ventilator.  We had already toured the NICU at 29 weeks, and had some idea of what to expect. Both the neonatologist and our obstetrician were very keen for her to stay put as long as possible, as it would mean less complications associated with prematurity.

At our scan in week 35, the sonographer finally found the stent – our little monkey had managed to pull it out and it was floating in the amniotic fluid, up near her face.  But the good news was, no fluid was building up so our doctor was happy for us to continue with the pregnancy.

I began really thinking about birthing this baby.  And I began to get worried that we wouldn’t be able to make the one hour drive to the hospital in time.  As much as I didn’t want to, I began floating the idea of being induced.

Don’t panic…

I’m not about to subject you to another photo a day project but I have been thinking about what I want to do with my memory keeping this year.  Last year’s project was a great way to keep a track of what we were up to and it’s going to make scrapbooking an album so easy.  So I was thinking I’m going to a monthly wrap up thing, kind of what’s been going on around here, with no minimum or maximum  number of photo’s.  But I’m also probably going to post sporadically throughout the month too, just whenever I get a photo I want to share.

Getting my camera out daily kind of became a habit, and yesterday felt really weird not having the pressure to take one.  I wasn’t planning on getting my camera out today either, but heard Dan and the kids playing with the chickens outside so I couldn’t resist grabbing my camera and snapping a few shots.

The chickens are getting pretty tame now, so much so that Dan has been letting them out for a roam and they are quite happy to be subjected to the kids, even Bailey and his not so gentle ways.  The chickens are the only pets we have so the kids love to go and pat them.  And Alyssa has also given them full names now…they are Lucy Grace Roach and Alice Satay Roach.

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