Luke was born nearly two years ago. He was born at 3.31am and weighed 7lb 8oz. We were delighted. I have never blogged about his birth before, but here goes.
Luke was our third baby. We found out he was coming just after Neil got a job which would require us to move to a very rural community just over an hour and a half from where we lived. We would be renting out our home and living in a tiny school house on the school grounds. Neil was elated when he got the job. I cried. I felt bad that I couldn't be happier for him. But I was terrified. In the end it turned out to be one of the best things we ever did, and was a special time in our lives.
I had a scan when I was 8 weeks pregnant, which confirmed a heartbeat etc. I lined up a new midwife near where we were moving to. The date for the 12 week scan, where they routinely screen for Down syndrome, was the week after we moved. I met with the midwife, who offered us this scan. I turned it down, as we already had a heartbeat, and had discussed the issue and decided that no matter what, we would be having this baby. We have both worked with children with special needs, and decided that if someone had to do it, we could. Little did we know that soon we would be walking the talk! Neil can't remember us having this conversation, but I can recall it vividly. Lucky for him he comes out well in it!
My pregnancy was without complications. We had a scan at 20 weeks, and at the last minute found out the gender of the baby, which I have written about before. http://lifewithlukeskywalker.blogspot.com/2008/11/18-months-or-so-ago-my-then-3-and-half.html Luke was very active in the womb, but so had the others. I remember being tired and uncomfortable one night, and sitting on the side of our bed, saying to Neil "This baby is alright, isn't he?". He just seemed to never sit still. Neil reassured me that everything was fine, he was just a mover and shaker like our other babies, and forgot about it.
The scan showed that the placenta was lying too low, and so at around 36 weeks I had another scan to check this. We were really excited as it was in 3D and we got to see his face. He looked gorgeous. Our only worry was that they were predicting him to be enormous- close to 10lbs- and I am not built for such things!
Luke was due on the 26th of January 2008, but because we were living 45 minutes from hospital on a hilly and windy road without mobile phone coverage, and my labour with Emily was only 3 hours, I persuaded the midwife to induce me. My worst nightmare was delivering Luke in the dark on the side of the road somewhere. So on the morning of the 18th of Jan, we went to hospital. The delivery suite was full to capacity! Every woman in Hastings had had her baby overnight, so it wasn't looking good. Our midwife Judy got to work helping the staff move the mums through to the next ward, in the hope of a bed coming available. It was a Friday, and if we couldn't get a bed, we would have to go home and wait until the Monday. We were quite happy. Mum was at our house with the big kids, so Neil got us coffee, lunch and some magazines, and we sat in a side room having a lovely time. It was almost like a date! Around lunchtime I started having some contractions, and not long after there was a free bed, and I was admitted.
Judy had a look at how things were going, and I had the monitor etc. It seemed that I was pretty much already in labour, and it wouldn't take much to get things moving. I had one lot of prostin gel, and then the waiting began. Every time I sat down, the contractions would stop, and when I got up, things got started again. By the time I was allowed to have more gel, it was too late in the afternoon, and the hospital rules meant we would have to stay overnight and start again in the morning. Judy recommended I keep moving if I wanted things to progress, so I did several loops up and down the stairs. I must have been a funny sight!
Around 9 Judy said she was going to head for home. She asked me what I thought would happen, and I felt quite certain that I would not make it through the night without having the baby. She was keen to get some sleep, and so was I!
I was woken by contractions about 12.30 and laboured by myself with Neil asleep on the mattress for about half an hour, and then jumped into the shower. I informed the nurses on duty that I was definitely in labour as he slept, but they just shrugged and looked at me. I don't think they believed me, the old bags! Around 1.30am things were getting serious, so I woke Neil up and he ran the bath for me. Another hour or so in there, and so I got out. It was time to call Judy, and I wanted that gas!
By the time Judy arrived, it was time for me to push. I HATE pushing. So after about 6 contractions, I didn't believe Judy and Neil, who were telling me that the baby's head was about to be born. I thought they were exaggerating to get me to keep going, but sure enough, with the next push, his head arrived, and then it was all over. I couldn't believe it.
He was enormous. His apgar at one minute was 9, and then 10. He was looking around calmly, and he had dark hair! Hair! Our other babies had a tiny amount of dark hair when they were born, but it fell out and they were bald for the next two years. Luke had much more hair, which was a surprise for us. He had rolls everywhere. Rolls up his arms, rolls around his neck. He was covered! When Judy weighed him, he just lay there patiently, looking around. I had been worried that he would be a screamer, as the other two had been such good babies, and I was relieved. The scales said he was only 5lb something, which all of us thought could not be right, as he looked so huge. Judy got another set, and still Luke didn't cry. I couldn't believe my luck. The next set said 7lb 8oz, which was better, but still seemed a bit light. After all he looked so big. I got him back and tried to feed him. He was keen but tired quickly and I thought to myself that it was funny how quickly you forget what it is like to breastfeed a newborn. I kept persisting, and he had the odd suck, but nothing much.
After a couple of hours, Neil went home to tell the kids and have a bit of a sleep. Then he was going to bring them and mum for a visit to meet Luke. He was on fop of the world. I tried to have a rest. I kept trying to feed him, but was having trouble getting him to latch. I would have to be patient I told myself. I had a visit from my friend Anna, who had a cuddle. She is my only friend to have met Luke 'before' the diagnosis. This is special to me.
I sent a whole lot of texts telling people about Luke, cuddled him lots, and waited for Neil and the kids to arrive. They were both so excited and couldn't wait, and were fighting over whose turn it was to hold him. We were so happy and proud of our beautiful family.
Mum took the kids home after a while and Neil stayed with me until after tea, when he headed home for some sleep and to see the kids and put them to bed. Throughout the night I looked at my beautiful baby, and tried to feed him. I looked at him, and thought something wasn't 'right'. His legs were short compared to his body. He looked so solid, but didn't weight what he looked like he should. I wondered whether he was a 'little person'. I remembered how I had studied Ben so closely on the night after he was born, and worried myself sick that there was something 'wrong' with him. So I decided it was just hormones and I was being silly. Later I noticed a certain look around his eyes, so I decided to check his hands for the single palmar crease. I knew this could be a sign of Down syndrome. One hand had two creases and the other had one. What did this mean? I decided that if you had two on one hand, then you definitely could not have Down syndrome. "Stop worrying woman" I thought to myself. Sometime in the night I called the duty midwife to come and help me with the feeding. She helped to latch Luke and got the pump so I could express, and got a wee cup for him to 'lap' some of my milk out of, so that he was getting more. She asked if she could tell Judy, my midwife, what we had been trying when Judy came in in the morning, and said she was going to suggest I use a shield to help Luke latch. I have never had any trouble feeding before, and this lady was great. I will never forget her as long as I live.
When Judy arrived in the morning, she asked me to tell her how things had been going, and so I ran through the list. I was desperate for her to reassure me that everything was okay. It was like a bad dream, because she didn't. She just looked at me and listened. There was a short silence, and then I said the thing I didn't want to say, as if not saying it would mean it wasn't true. "It's almost like he has Down syndrome or something." And she looked at me, and said "Yes, it is."
I couldn't believe what I was hearing. She was supposed to be telling me not to be silly, Luke was fine, and here she was agreeing with me. This wasn't how it was supposed to go! She went on to say that this may not be the case, that some kids just look a bit different but are actually fine, and that I would have had them through school. Now I knew things were not right. My kids are not funny looking, they are beautiful, and there was no way this was true!
She decided to go and get the paediatrician to clear things up straight away. He came, looking like he was all of 15 years old! He asked me what my concerns were, and I told him, feeling quite disloyal to Luke as I did. He asked if he could hold Luke and have a look at him, and so of course I agreed. He did his thing, and handed Luke back to me. He looked me right in the eye, and said that he often sees babies about things like this, and most of the time, he can tell the mothers straight away that all is fine. And sometimes, he doesn't know, and they have to wait for test results. And that sometimes, he knows for certain straight away. And I'm praying, praying that I'm in that first group. I want to be one of those mothers. I really do, like I have never wanted anything in my life before.
And he looks at me and says, and I am sorry to tell you, but this is one of the times when I know for sure. Luke has Down syndrome. I cannot think about this without crying still, two years later. I was all alone, apart from this doctor and the midwife. She had rung Neil and asked him to come in without the kids, as I was a bit emotional today. To his man brain that meant delay the kids for about an hour or so, then get mum to bring them in, and we'll bring Mel and Luke home together.
The doctor then left me with some information and a promise to come back and talk to Neil when he arrived. I sat crying and holding Luke and waiting for him to arrive. Judy was great. We talked about how to break the news to him. As if the way we told him would make a difference. Judy offered to tell him for me if that was better, but I thought I should do it. That was the worst moment of my life- breaking my husband's heart. I had never seen him cry before. Only a few random tears when we were married, and when the others were born. Not really cry like this. He didn't believe me at first. Then he punched the wall. Then he held Luke, and the rest is a bit of a blur. We have never been so sad. Judy headed mum off and entertained the kids while we told her. She had seen a look in Luke's eyes the day before, but had shrugged it off as nothing, so it didn't come as a complete surprise.
The testing began the next day. I stayed an extra night in hospital for heart and blood tests. We had to come back several times over the next few days, as he was a little jaundiced and they wanted to monitor him. His hearing was fine, but his heart was not. He was diagnosed with an 8mm ASD which we were told would require surgery in the future. We have since had another scan and it is almost gone, so he will no longer need an operation in the future, thank goodness.
I am glad that I did not know that Luke had DS while I was pregnant. I would have just been stressed and worried, and as we had just moved, it would have made things much harder. But I will always be sad that what should have been a joyful time for our family had the shine taken off it, and that I did not get to enjoy what is probably my last baby in the way that I would have liked to, because of our grief.
Two years on and Luke is the most fun kid ever! He is a character, has a wicked sense of humour and loves an audience. He is adored by his family. He loves music (I hate when those cliches are true!) and animals, and has just started singing. He has lots of words and signs, and is able to communicate exactly what he wants. He can crawl and bum shuffle and cruise round the furniture and climb and get into mischief. He can have a tantrum. He can throw his food all over the kitchen. He loves and is loved. He is happy, and so am I.
He is one of the best things that has ever happened to our family.
Today we went to Caroline Bay, where there was a Big Dig at the beach, and also a fair.
Luke was in for a swim. He's decided he loves the water, and even though it was not that warm he stayed in for ages and had a wee tant when I got him out! This is the boy who wouldn't sit down in the bath until two weeks ago :) To say he loved it would be an understatement. A kiss from Luke...
Ben is now old enough to want to ride by himself. I thought I might be able to be seen with him in public until he was at least 10, but apparently not ;)
We came home all sandy and windswept, and tired. It was a great day.
Well, last night he did it. Just this week I was saying to a friend that I have always assumed that Luke would walk before his 2nd birthday, but now that is only a couple of weeks away and it hasn't seemed to be getting any closer to happening.
Luke has pretty good tone generally, but his core strength (more the lack of!) has always been his weakness. So he can spider crawl as fast as Spiderman himself, and his mum has to run to catch him at times. He can do a 'traditional' crawl too, usually to show off, if he feels like it. He can also bum shuffle, so he can carry stuff. Luke can also climb onto the couch, bounce himself on the tramp, play in the toilet, fish things out of the dishwasher, open and close the microwave, get himself outside into the garden and head for the sand pit. He doesn't see what the big deal is about walking.
Well last night, as Neil was putting Ben to bed, I had Luke propped up against the couch. Standing up. And I was trying to encourage him to take that step. The first one. Again.
So, he did. Not just one, but two. And lots more times. Neil could hear me go supersonic through the wall. I haven't felt so very proud in a while. He got up to 4 steps. He's a star.
This morning he tried out his new trick for Ben. I don't think there is a prouder big brother in New Zealand today.
He would not, however, walk to Emily. Call that karma for all the times she drags him around like he is her personal assistant, and won't put him down, even if he grizzles. She is not too happy about that!
Now I need to think about when to move him to a proper bed from the cot. Any suggestions?