How has it been 6 months already?

I'm not sure how it happened, but I have a 6 month old daughter. We're trying solids, we're learning to roll... I never knew there was so much involved in rolling over... Emma receives funding as a child with a disability - funding for physio, speech, and occupational therapy - so we are currently attending physio and water therapy to keep her on top of her milestones. I'm learning all sorts of things about which muscles need to be strengthened in order to roll, sit, crawl and stand. It all makes sense once explained, and I find it utterly fascinating.

We don't go to physio often - just once every six weeks or so - as Emma is fairly 'typical' in her physical development so far. Our physio wants us to continue to see her periodically so that if Emma's development slows down she won't get left behind. We're also doing water therapy to complement the physio. We have to do water therapy in intensive blocks so we're doing this term and will start again in term 1 2017. It's such a strange new world, this world of funding and therapy and specialists and waiting lists.

In my first few posts I worried about finding people to support us. I worried about Mother's Group and Down Syndrome Victoria and not finding a home within both worlds. Those worries are GONE. The people at DSV are amazing. They're just normal, everyday people who all have this extra chromosome in common, but they are also a wealth of knowledge and resources. The parents in my local support group are the same. We're all just parents trying our best to do what our kids need us to do.... and that is bloody amazing. It's nice to feel normal around people who are your people.

My Mother's Group is also great. We were thrown together by the council, with nothing in common apart from having children in March 2016. 6 of us keep in touch, still meeting every week and complaining about the lack of sleep or the silly husbands or telling everyone how amazing our kids are for doing a poo. Our kids poo a lot, and we like to talk about it. We're starting to venture out to local cafes instead of hiding in someone's house now that we're all beyond caring what other people think about us. It's nice to feel normal around people who are your people.

I just realised that I finished the last two paragraphs with the same sentence. It's nice to feel normal around people who are your people. We're just people. People with lives that intersect and paths that cross and we all need support.

Support comes in many forms, and I decided to enrol Emma in daycare one day a week, for both of us. Emma needs to be around other kids her age, so that they encourage her development. I need some time for myself as well - I'm studying a Medical Transcription Certificate and I'm struggling to dedicate quality time to my study. One day a week is enough to make me feel like a person as well as a mum, but not enough to make me feel guilty for leaving her. She's been a couple of times now and seems to be settling in. It certainly helps that the director of the centre is a friend of mine so I get selfies sent to my phone of Emma 'working' in the bosses office. I know she's in good hands.

Emma is a joy. She's gorgeous and frustrating and clever and ridiculous and she drives me crazy but I love her to bits. My grandmother passed away last week, and before she did she asked me what the results of Emma's tests were. When she asked I wasn't sure what tests she was talking about so I asked her 'Which tests Gran?' She replied 'Is she going to be okay? Did the test say she would be okay?' 'Of course she is Gran. She's going to be just fine' I think she was talking about the genetic test we had to see which type of Down Syndrome Emma has. I don't know the results of that test because it no longer matters to me. I haven't asked. I didn't lie to my Gran, because Emma is going to be just fine. My Gran needed to know, and I needed to tell her. My Gran is at peace now, with her husband. I hope she watches over Emma for me, to make sure that she's okay, just like I know she will be.

I will try to write more often about our adventures. We do get up to some pretty fun stuff, along with spending a lot of time lying on the floor trying to roll, snuggling on the couch, and spitting out food. It's a great life.

Didn't you have the test?

This is the question I am most asked when people discover Emma has Down Syndrome.

'But didn't you have the test?'

We did have some testing, and when that came back with a 1 in 750 chance of Down Syndrome we chose not to test further. The result wouldn't have changed our decision whether to keep her or not, so there was no point in having further, more invasive, testing.  I probably would have agonized for months over how this would affect our lives, so in a way I'm glad that we didn't know before she was born. It may have been good, though, to know, so that we could have been connected with support much earlier.

The question I ask now though, is 'What would the world look like without Down Syndrome?'

In the 8 short weeks since Emma was born, I have been shown a world full of love, a world full of challenges, a world full of support. I have met people whose lives have been forever altered by having a child with Down Syndrome. I have, however, not met someone whose life has been destroyed by having a child with Down Syndrome. The people I have met are full of positive stories, of challenging stories, of funny stories about how their lives have changed. Not one of those people wishes their child to be without Down Syndrome. If you took it away, they wouldn't be the same person, would they?

There has been some talk about the ability of science to remove Down Syndrome. To discover and remove the extra gene, therefore 'curing' it. I'm fairly sure this is not able to be done after a person is born, but who knows how it will happen once science catches up with itself. What would the outcome be? What would the point be?

I know that Emma will face some challenges in her life, but all people face challenges. I know that Emma may struggle to learn to walk or talk as quickly as a typically developing child, but some typically developing children also struggle with learning things. I know that when the time comes for Emma to get a boyfriend (or a girlfriend!), move out of home, and live independently, I will struggle with letting her go. I'm sure I will also struggle with those things with any other children we may have. There's nothing that she can't try, nothing that she can't do, if she wants to.

There are many people who find out that their child will have Down Syndrome that do not have the same view as I do. That presented with the facts, cannot see themselves raising a child with Down Syndrome. They choose to not raise this child, and instead terminate, or put the child up for adoption. The reality of the world is that some people believe that they are not equipped to handle whatever it is that Down Syndrome may bring to their lives. I cannot judge these people, because I do not walk in their shoes. That decision must be the toughest one to make, and they are very brave to make it. Loss is horrendous, whether you choose it or the choice is made for you.

I don't want a world without difference. Difference is what makes us unique. Difference is what makes us love and appreciate ourselves and our family. Difference is how we learn to be ourselves.

I don't want science to take Emma's difference away.

The first month

It's been a month since Emma arrived... and what a month it's been!

Since we came home 3 weeks ago, we haven't stopped. We've had visitors - friends, family, and midwives. We've been out and about a couple of times as a family. We've been to the doctor's, Medicare, Centrelink, the shopping centre... so many places!

We spent Easter weekend with family - my Mum's family is huge (there's about 50 of us) and we all get together at Easter and Christmas, and a couple of other times during the year. We used to get together once a month, but it got too crazy so now we just do 3 or 4 times and it's much more civilised! Mum is one of 6 kids, and they've all got a few themselves, and now the kids are having kids so it's huge... Emma was the star of the show at Easter. Everyone wanted a cuddle, a chat, and a snuggle. It was held at my Gran's house about an hour and a half from our house. We were a bit worried about having Emma in the car for so long but she loved the trip - slept most of the time and it didn't bother her at all. The outfit we bought her was way too big, but we put it on her anyway!

Emma's First Easter

My husband goes back to work next week, so Emma and I will be on our own most of the day. I'm sure this will be a big change for all 3 of us - while we are all looking forward to getting into a proper routine, I will miss my husband's help and support.

Since he'll be back at work and unable to drive me around, we had to visit the doctor and get clearance for me to drive. Having a c-section means I'm not meant to drive for 6 weeks after surgery - if I do I'm not covered by insurance if I have an accident. Luckily, my doctor is happy with my recovery and has given me clearance. Woohoo!

I think the next few weeks will be difficult while we work out our routine again. I will be setting some time aside each evening after Emma is asleep to plan what needs to happen the next day - housework, washing, outings etc - so that we'll be able to do what needs to be done but also have some fun time too. Emma's sleep pattern is slowly sorting itself out - we're getting more awake time during the day and able to settle her down quickly when she wakes during the night for a feed. She was a bit upside down for a while there - awake all night and asleep all day - but it's sorted itself out now.

On Monday night we're going to our first meeting with Down Syndrome Victoria. It's a meeting for parents with a new child diagnosed with Down Syndrome, aimed at giving some basic information but also connecting parents with each other. I'm really looking forward to it.

I'm also looking forward to our first visit from the Maternal & Child Health Nurse - she'll weigh and measure Emma, check some milestones, give us advice on what we should be working on with her, and hopefully connect us with a local Mother's Group. I'm apprehensive about joining a Mother's Group because I don't want them to judge us or treat us differently because of Emma's Down Syndrome diagnosis - but I think that is mostly my issue and I shouldn't let it stop me from trying to connect with anyone. After all, we want Emma to be given the same opportunities as any other child, so I need to give her them myself to begin with!

Our 1 Month Old

Dear Emma

Dear Emma,

When I hold you in my arms, I look at you and wonder how you fit inside of me for so long.

When you smile at me, even though I know it's wind, my heart explodes with love.

When you snuggle into my chest, burrowing your head and squishing up your legs, I melt.

When you scratch me with your perfectly shaped fingernails, I wonder how I'll ever keep you still enough to cut them.

When you cry, my stomach drops and I want to make everything okay.

When you look into my eyes, I look into yours and marvel at how similar we are.

When you sleep, I watch your many facial expressions and want to know what you're dreaming about.

When you eat, I beg you to take a breath because you eat so fast.

When people look at you and tell me 'she's a doll' or 'she's adorable' I smile and say 'I know'.

When strangers smile at us, I smile back.

I'm proud of who you are, I'm proud of who you'll be. Nothing will hold you back. At only 3 weeks old I know we're in for a bumpy ride - you have such a strong personality, a firm idea of what you will and won't do, and a calm and placid demeanor.

Please don't change. Please don't try to be anyone other than who you are. You're going to grow into a strong, independent, loving woman. I can't wait to share life with you.

Love,
Your Mum.
xx

Our birth story

Our sweet girl was born two weeks ago... this is our story.

I had pregnancy induced hypertension (high blood pressure) so was being monitored a bit more closely from about 30 weeks. At 32 weeks, I had a growth scan, and thought nothing of it as I didn't hear from either the hospital or my GP, despite seeing both of them weekly.

At 37 weeks, someone finally looked up the results of the growth scan, and they became worried. Our girl was in the 17th percentile for her size - which meant that out of 100 babies born, she would only weigh more than 17 of them. Pretty small, but nothing to worry about. I was sent for a follow-up growth scan the next day, so went into the ultrasound place after a big day of shopping to buy food to prepare for meals when the time came. Lucky I went home to drop all the food off... because things got pretty hectic pretty quickly!

I went for the scan, and the tech was pretty worried. There was hardly any amniotic fluid, and our girl had hardly grown. She was now in the 3rd percentile for size. He left me in the room while he phoned the hospital. They wanted me to go straight in - so I got in the car and drove across the road to the hospital to be seen by the Foetal Monitoring Team.

Hooked up to the heart rate monitor, no-one seemed worried. Our girl was fine, not under any stress, moving heaps and going well. I was examined by an obstetrician, and then taken through to the Maternity Ward. Another doctor came through after a few minutes and told me that while bubs wasn't distressed, the situation wasn't ideal. They wanted to get her out - she would be safer on the outside. At 5pm, I phoned my husband and told him that we would be induced in the morning. He finished work, went home to get our bags, and was on his way to meet me.

Before he got there, the doctor came back in and told me that inducing wasn't going to happen, I was to have a c-section in the morning. I immediately started crying - my body was made to birth a child, and all along I've said I wanted to avoid a c-section. I wanted a drug-free, vaginal birth. But I was worried.... the doctor explained that with the low level of fluid and a small baby, the stress of labour would probably result in an emergency c-section anyway, so we were better to go in planned, stress-free, and calm. I reluctantly agreed, and broke the news to my husband when he arrived shortly after.

I was admitted to the ward, and hubster went home to try to get a good night's sleep. It was a pretty easy night, I watched some TV, had regular blood pressure monitoring, got a drip inserted in my hand, had a shower, and tried to sleep. My sleep was broken but sound, and I made peace with the fact that the birth wouldn't go the way I had imagined. I made peace with the reality that our girl would have a better entrance into the world if we went with the expert's opinion. There was no point in stressing over the change in plans - things just had to be this way, and I accepted that.

Morning came, and our attitude of 'just going with it' proved successful. The bed that I was in was not the typical bed that the orderlies were used to. It was motorised, and the poor guy couldn't drive it. We crashed 3 times on the way to theatre - twice into walls, and once into another patient's bed. We couldn't stop laughing at how ridiculous the situation felt. I think it was nerves on both of our parts - my husband was just as nervous as I was. After a couple of hours of waiting to be wheeled through, we were told that an emergency had come through and there was no longer a theatre for my procedure. We were sent back to my room - complete with another 2 crashes on the way back. Cue more giggles.

Just after lunch (which came to my room and I had to refuse as I wasn't allowed to eat pre-surgery) we were told that we would be going back to theatre as soon as we found a driver. The original guy who took me down refused to drive me - he was embarrassed that he'd hit so many things and didn't want to do it again. Another guy turned up and drove me quite expertly to the waiting area, where I was prepped, briefed by the anesthetist, and wheeled through to the theatre.

The epidural was strange, I hadn't read anything about c-sections so didn't really know what to expect, but I really didn't feel a thing after the local anesthetic was put in. Soon enough, my husband was next to me, and we were waiting to hear the 'cappucino noise' which was the suction - we were told once we heard this, our girl would soon be out! The suction started at 2.18pm, a tiny scream was heard, and then a squirmy baby was held over the partition, and we were told our girl was healthy. She was taken over to the table for examination, where hubster cut her cord, and then she was wrapped up and whisked away to Special Care for some further treatment. She had stopped breathing for just a second, but the nurse assured me everything was fine. My husband went with her while I got stitched back up. I can't believe how long it took for them to get me sorted out. The nurse came back and told me that our girl was perfectly fine, just a little small, and that I could see her soon.

I was wheeled to recovery, and just as they were about to send me back to my room, the bed stopped working. No-one had plugged the stupid thing in during surgery, so the battery had gone flat. I couldn't get back to my room. I couldn't move beds because I was still numb from the chest down. We were stuck. The poor nurses in recovery kept apologising for the delay - I couldn't help but giggle. The pain medication probably helped my mood. I waited while they Googled the bed manufacturer. They spent an hour trying to find out how to switch the bed to manual mode so that they could push me back to my room. Finally, about 2.5 hours after she was taken to Special Care, I was back in my room. My husband met me there, and started to tell me how gorgeous our girl was. We decided that the name we'd settled on was definitely her name, and Emma was finally real. I still couldn't see her, which really annoyed me, but I knew she was in the best hands.

At 7pm they told me I wouldn't be able to see her until the morning - she would be staying in Special Care for a couple of days and I was too raw from surgery to be moving to go and see her. I was upset, but still understood. It was a long night where I kept wondering how she was, where she was, and just wanting to cuddle her. My husband had taken heaps of photos but it wasn't enough. I needed to see her, to smell her, to snuggle her. I began to feel very seperated from the whole situation. I wasn't pregnant, but I didn't have my baby in my arms. She wasn't gone, but she wasn't here. It was very strange.

The next morning, I finally was able to get into a wheelchair and go to Special Care. Emma was in a humidicrib, hooked up to a heart monitor, an oxygen monitor, with a feeding tube in her nose, and under UV lights for jaundice. She was so small. I still couldn't hold her like I desperately wanted to. I held her hand, stroked her tummy, and told her I loved her. She was just so precious and tiny. Only 2.2kg. Eventually we had to go back to the room, but I knew I'd be back soon. Both my parents and my husband's Mum visited during the day and my husband took them all to visit her. When my mum came, she wheeled me down and asked the nurse if I could hold Emma. I cried as I looked at her gorgeous face and felt her warmth on my chest.

At about 5pm, just after my parents left, a doctor came to my room. He asked if we had a minute, and my stomach dropped. I knew something wasn't right. He began asking if we'd had any prenatal testing, and wanted to know what those results were. I answered, not really knowing what he was asking us, but wanting him to tell us why he was there. He then said the words I was dreading 'We think Emma has Down Syndrome'. He went on to say that she didn't have all of the classic features, but some subtle ones that made them think, along with her low birth weight, that they should test for Down Syndrome. How could they not know? Wasn't it obvious? I just didn't understand, and I could tell my husband was the same. We looked at each other with wild eyes. We were also bewildered as it was Saturday, and the doctor said that they couldn't perform the test until Monday - the lab didn't work weekends and so we would have to wait. The results would take up to a week to come back, so we wouldn't know until then.

He left. We cried. We both didn't care if she had it or not, we just wanted to know. We didn't know how to deal with the information, or what to do. We were stuck in a stupid limbo between hoping our girl was fine, but knowing that no matter what the result, she was ours and we loved her more than we could imagine. I called my Mum, and through my tears asked her to come back. She did, and we just hugged and cried. My emotions were all over the place. I desperately wanted her not to have it, to have the life we'd always dreamed about for her, but deep down I knew that it was true. I felt guilty for hoping that she didn't. I felt disconnected from her - she wasn't in our room, she wasn't in my arms, she was all alone in the nursery. Mum left, and we cried again. My husband held me while I sobbed. Someone came to check my vitals and told us to go and see her.

It was midnight. The nurses said that we were welcome any time of day or night. No-one had told us that. We stayed for an hour or so, just staring at her. We changed her nappy, and fed her a bottle. She was friggin perfect, and it wasn't fair. We just wanted to love her and do everything we could to make her well, but she was hooked up to all these machines and there was nothing we could do.

We didn't sleep well.

The next day passed slowly. Someone came the next morning to shower me. We ate when food came to the room, but we didn't taste it. We went to the nursery every 3 hours to feed and change Emma, and in between we just sat and waited until it was time to go again. The nurses in Special Care were amazing, showing us how to change her, feed her, burp her. Her feeding tube was removed as she was sucking fine from the bottle. She was taken out of the humidicrib as she was doing fine without the UV and the extra temperature control. She was a perfectly healthy baby, just small.

Monday came, and we were there when they took the blood for the test. They took so much from her tiny body. She didn't cry. She wasn't bothered by the needles or the invasion. She took it in her stride, and so did we. This test was something we didn't want to have... but something we needed. We all needed to know either way so that we could just move forward.

Tuesday came, and all the monitors were removed. She was fine. I was still going every 3 hours to feed and change her, even through the night. I set alarms and walked very gingerly through the ward to the nursery. I hand-expressed, trying to bring my milk in. My husband came during the day and went home at night to try to sleep. Neither of us slept well, but we tried. We met with the social worker to discuss how we were feeling about the results. Neither of us knew how we were feeling. We were told Emma would be staying in Special Care until she put on weight. I wouldn't be able to stay. In the afternoon, we were told that the results would be in the next morning. I was discharged on Tuesday afternoon, but they found me a room to sleep in that night. I couldn't leave my girl... I cried when I told the social worker that I didn't want to abandon Emma, and she did what she could to keep me in. My husband couldn't stay, and that night I felt so alone.

Wednesday came, and we had asked to feed and change her at 9am before meeting with the doctor. My Mum arrived while we we feeding her. The doctor popped his head in and said that it would be a little while as he was waiting for the social worker and the head pediatrician. We looked at each other, Mum, my husband, and I, and we all knew what the answer was. It was a long half hour before everyone was ready, and we went into a small room. The head pediatrician told us straight away that the result was positive. Tears flowed, questions were asked and answered, and tissues were handed around.

The doctors left, the social worker stayed. Mum cried the hardest. I cried a lot. My husband cried a little bit. The social worker left. Mum rang Dad. She cried again. We worked out a plan to tell our families. My husband rang his Mum and Dad. My Mum organised for my brothers to come in that night. She left to go and visit some and ring others. We cried. We went back to the nursery and held our girl, while trying not to cry. We fed and changed her every 3 hours. We ate, not tasting anything. They found us a room for the night - my husband got to stay this time - and we stayed.

The next morning, we had decided that we wouldn't stay again. We would make it work, going backwards and forwards between home and the hospital. We couldn't stay there forever, we needed to be home and in a routine. We would work out how to be there for Emma, the most that we could, even though it would be exhausting for us. The social worker mentioned that we might be able to transfer her to a hospital a bit closer to home. Phone calls were made, plans were discussed, and then the most amazing news...

We could go home! The hospital closest to home had a program, where a midwife comes every 2 days to weigh and check and consult. No Special Care nursery. No monitors. No hospital. Just home. We were overjoyed. The next few hours were the longest. Waiting. Waiting for paperwork. Waiting for doctors to give their final tick of approval.

And then we were home.

We have been home just over a week, and that week has been a blur of sleepless nights, daytime naps, visitors, nappies, bottles, snuggles, cuddles, and learning how to be a family of 3. Emma has been putting on weight like a champion, and will be discharged from the program on Tuesday (she was only 20 grams away from the target at the last visit!).

Emma is just like any other baby. She cries, she poos, she eats, she wees, she sleeps. She has her own personality already - she's so strong willed, yet takes everything in her stride. She is starting to be so much more alert. We're struggling to breastfeed as my supply is not increasing along with her appetite, but we are mix-feeding and trying to increase with medication, just like any other new mother would.

Emma's diagnosis was a relief. We know that she will face some challenges in her life, especially in the next few years. However, unlike so many parents, we have a diagnosis. We can prepare her and ourselves for challenges, and rejoice when she hits her milestones. There is no more 'not knowing'. We have found support, both from our family and friends, and also from Down Syndrome Victoria. We have begun our journey, not the road we thought we would be on when we found out we were having a baby, but a great road nonetheless.