A broken heart

As Michael entered his 4th week, he developed major nasal congestion. It got so bad that he started setting off his Angelcare monitor while he struggled to breathe past all the gunk in the back of his nose.

I took him straight to his paediatrician who confirmed he definitely had bad congestion but he was concerned about the monitor going off. He admitted Michael to hospital for apnea observation and we agreed to him running a battery of tests on Michael which would have to be done anyway at some or other time.

So, off we went to Mediclinic Durbanville for a 48 hour stay. There were blood tests, X-rays, ultrasound, an ECG and an appointment with a paediatric cardiologist for a thorough look at his heart. All the tests were fine albeit tiring and Michael was quite the trooper with all the positioning, poking and prodding going on.

The big one was the cardiologist's appointment. The little guy slept through his cardiac ultrasound and it was a good thing because it gave us time to process the news we received.

Michael has an atrioventricular septal defect. Children with Trisomy 21 often have a heart condition and he has one of the more common varieties. I've included a picture which illustrates the defect here.


In Michael's case, the defect is quite complicated so a full repair won't happen until he's a toddler. To help his body cope, he is getting a pulmonary artery banding. This will reduce the excess blood flowing through his lungs to only what he needs and take some strain off his heart until the repair can happen. He still has good blood flow and little mixing but the defect is creating flow imbalances to his other organs and his heart is enlarged.

When we heard this, we weren't even shocked. We were kind of expecting things to go wrong and to hear more bad news. However, this is something that can be fixed and he has the best paediatric heart surgeon in the country. It's not great knowing our infant is undergoing major surgery but it's better than him suffering through heart failure which is the eventual complication of his defect.

The surgery is taking place on 25 July at Christiaan Barnard Memorial hospital and it's going to be a 7-10 day stay while he recovers. The surgeon, Dr Susan Vosloo, is very confident there will be no problems and he is healthy in every other way so he's in good condition for surgery.

We aren't nervous (yet) for the surgery, more concerned about Michael after. It's not nice to see a little baby who cannot communicate that he is pain and we wonder how he'll be fed when the incision is on his side. Dr Vosloo assured us that he will be pain free or comfortable at the least as they like to make sure the babies are cared for. As for feeding, well we'll have to see how to cross that bridge when we get there.

It's going to be weird leaving Michael in ICU while I come home but I am learning to let go and trust in others tasked with caring for this little person. I have come around to the conclusion that what must be will be and all I can do is have faith.

Supermassive Black Hole

Normally, I'm able to associate music to situations in my life. The week after Michael's Down Syndrome diagnosis has no music because there is no sound, no lyric, no rhythm that can describe the darkness that came over me.

I like to describe myself as a scientist with a little creative sprinkled on top. Because I function with facts, I spent the first few days after the diagnosis reading...and reading far too much. I scheduled an appointment with a genetic counsellor so we could get a better understanding of what this condition means for parents. There was just so much information and my brain was spinning at 4000 km/s.

I spent my days weeping in the shower, tearing up with every feed and just feeling lost, angry, sad and confused. How the heck did we end up with this?!?!

The genetic counsellor was great and answered all of our questions. We had all this information and set off to Arabella for a weekend of rest. Or so I thought.

As Friday night drifted into the early hours of Saturday morning, I hit my breaking point. I was feeding Michael in the dark and thinking a few things at the same time: Why did God do this to us? What kind of god places such a burden on an innocent child doomed to spend life being different and incapable of independence? Wouldn't it just be better if he hadn't been born in the first place? How lonely is he going to feel when he learns he will never marry or have children? How are we going to cope with a special needs child? What happens to all our dreams for the future?

There were just a lot of thoughts and, at my lowest point, I detached emotionally from Michael. I looked at him and felt nothing. When I wasn't looking at him, I felt pain and a deep, deep sense of loss. I was in mourning because I felt I had been robbed of the son I had prayed for. Honestly, why did God give me what I wanted and, via an extra chromosome, not only take it away from me but also give me a whole new set of problems?

If you had seen me that night, you would've agreed that I really needed some psychological assistance at that point. The next morning, Trevor had the arduous task of bringing me back to life. He spent an hour sitting and talking with me trying to pull me out of a completely negative headspace. Eventually, he got it right and I slowly started returning to normal with a slightly more positive outlook.

I have to say that I'm only explaining my feelings. Trevor also went through a very difficult time for weeks after but I can't speak of what he felt. All I can put down here is my experience. It was awful. They say that receiving that diagnosis is exactly the same as losing someone you love and you do go through the stages of grief. I personally was mourning the loss of the future I hoped for, not only for myself and my family but also for Michael.

It took quite a while for me to make peace with that extra chromosome and what it means. The journey there had plenty of hiccups and, of course, I am still a bit heartbroken that Michael's path ahead isn't easy. I had many days where it felt like I was in a dream waiting to wake up or that I was standing inside someone else's life. But it is what it is and all we can do now is choose how we deal with it. Our friends and family have been incredible pillars of support and they're a big part of how we've been coping. I know Michael is loved and our job now is to help him reach his full potential...whatever that may be.

The day our life changed

At my 16 week check-up, my gynae started the appointment by expressing her displeasure with me. I was supposed to go for a blood test at 12 weeks which I forgot about and only had it done a week before my next appointment. The test indicated an increased risk of Down Syndrome.

Trevor and I were sent off to a specialist who couldn't make a conclusive diagnosis and we declined amniocentesis. The specialist felt that if we weren't going to terminate, there was no point in doing the amnio and risking a healthy child who showed no other indications of Trisomy 21 except for that one blood test. 

For the rest of my pregnancy, my doctor checked for every marker and none showed up. I even had a 3D ultrasound on a shoot for work and that gynae who didn't know me remarked that the baby showed no signs of Trisomy 21. And so we all hoped and prayed everything was fine. 

The day after Michael's birth, the paediatrician examined him thoroughly again and said he had some concerns. Michael didn't show enough of the physical characteristics for him to make a diagnosis and we all felt a blood test would answer everybody's question. For the next week, we were just a normal family with two children adjusting to life with a newborn.

And then the paediatrician asked to see us. He examined Michael yet again and, after that, we sat down and he delivered the news: Michael's blood test confirmed he has Trisomy 21. 

I held my composure while he explained the situation to us and we listened to the information he provided. But, when we got into the car, the walls came down and so did the tears. I cried bitterly all through Michael's feed and most of that afternoon is a blur. 

In just a few seconds, Michael's entire future was ripped from us. The boy I imagined playing soccer at school, giving me grief during high school, partying during his university days, getting married and having kids was gone. Those images were burnt in my mind and we were left with nothing but black. 

Despite knowing there was a risk, nothing prepared us for the reality. And to make matters worse, Trevor had to rush off with Wren-Lee to the doctor as she was sick and steadily deteriorating. We were tired emotionally and physically and had to prepare ourselves for what was coming...

Michael's birth story

At my very first antenatal appointment, my gynae said, "I wonder what this one's birth story is going to be."
What she meant by that was whether or not this child would have an interesting story like Wren's. Well, he does have a story...and it is something crazy and incredible.

At 35 weeks, I got the flu. I tried to go to work on two separate days but I was exhausted and not holding up well. On top of that, Michael was kicking and wriggling much more than usual and it only added to my discomfort. I saw my gynae on the Friday as she was leaving the next day on a three week holiday in Europe and would be returning right before the date we planned for a C-section if necessary. She was concerned about my health and that of the baby so, she booked me off work for an extra week to recover. We had a look at Michael, he was fine and the last thing she said was that this baby just needed to wait for her to come back.

Resting is something I don't do well and being forced to do very little for a week was more agony than enjoyable. By the Monday, I felt much better although still heavily congested. I was up and about doing stuff and felt good about the day. When I woke up the next day, it was completely different. I was freezing cold, just couldn't warm up and I was unbelievably tired.

Trevor, Wren-Lee and I all went to bed early because he was set to fly to Durban at 06:30 the next morning. We lay in bed chatting briefly and I was still awake for about 20 mins after Trevor had fallen asleep. While I lay there thinking, I felt a pop and warm liquid running down my leg. I knew immediately that my water just broke.

I woke Trevor up (and Wren-Lee jumped up too), called my parents and then tried to figure out how to get out of my bed without soaking the floor. It was pretty comical and I laughed while Trevor explained to Wren what was happening. With her safely off with my parents, I realised we had a slight problem seeing as I hadn't packed for hospital and didn't have everything I needed. But, there was no time to stress about it so we went off to hospital with whatever I could gather at 11pm.

The nurses called Dr Truter who was looking after all my gynae's patients in her absence. He advised a sleeping tablet and rest. Trevor went home and I went to sleep...until 4am. The contractions become more prominent and it started to hurt. By 8am, Dr Truter came to introduce himself and have a talk. Because I was 36 weeks along, there was no plan. He examined me, felt another c-section was the best course of action and it was set for lunchtime. I was really sore and he gave the go ahead for me to get a shot of Pethidine. I got the next shot an hour later and still the pain got worse. Another hour later, I got my third shot of Pethidine and strapped into the monitor.

My contractions were incredibly painful and I started asking if I could get an epidural for a few hours till my delivery. Request denied: It wouldn't be necessary if the baby was being born so soon. Trevor had the unpleasant job of rubbing my back with every contraction as I tried to breathe my way through them which was tough with heavy nasal congestion. By 11:50, I demanded to be freed from the monitor around my belly and ran for the shower. The hot water on my back finally brought relief and I refused to leave as my contractions were on top of one another. Trevor was begging me to get into my surgical gown so I could be wheeled to theater and I refused to leave the bathroom. Ironically, my stubbornness in that moment is what changed the game.

I eventually got into the gown, back in the bed and was wheeled into the passage en route to theater. Just as we were about to leave the maternity ward, I felt something change, a strong urge to push and I screamed. The nurse looked under my blanket and realised that this baby was coming out now. They turned me around and rushed me into a delivery room.

By now I was exhausted, begging for oxygen and saying I couldn't deliver this baby. I was seeing stars from lack of oxygen and in extreme pain. Between the midwife, the gynae and Trevor, I was getting three streams of information and instruction and there was no time for any painkillers so I was going au naturel. Lots of screaming, shouting and six pushes later, there was a baby.

The first question I asked as I watched Trevor and the paediatrician inspect the new little person with the big voice was for the time. It wasn't even 1pm yet. Apparently it was just 10 minutes from the time I was wheeled into delivery until Michael was born. This kid fought his way out into the world on his own terms.

I had wanted a natural delivery from the time I found out about the pregnancy, and although it definitely didn't go the way I planned, it was an amazing experience. The next day the gynae explained that I dilated the last 4 cms in less than an hour before I delivered so my contractions were incredibly painful and my exhaustion and rather loud reactions were valid. Michael's birth was definitely unexpected but he surprised us all with quite a story.

A not-so-normal birthday letter

Dear Wren-Lee

We did it – we survived your first year. I’m not going to lie, it was pretty awesome. Watching you grow from a tiny newborn into a tiny toddler has been a blessing and you have forever changed both my and your father’s lives with your presence.

I have to thank you for teaching me that life is messy…literally. In this past year, I have cleaned up more mess than the combined efforts of my entire life thus far. The washing has been endless, cleaning you up is relentless but I’ve loved you more with every one of your 42 bibs that I had to hang up on the line. But no matter the mess, you just keep smiling and it’s hard to not smile along with you.

Thank you for staying away from the two B’s: Bieber and Barney. You have no idea how delighted I am that you aren’t hypnotised by that purple dinosaur and not mesmerised by the vocal styling of the child star. Honestly, Bieber is on some weird trip right now and, hopefully, you’ll miss that craze altogether. The third B, boys, are a different story altogether and we’ll address that issue in your next birthday letter 20 years from now.

You’ve broken hearts. That nose thing you do and your easy sociable nature means that even the hardest person can’t resist your charm. People long to see you and you are spoilt because they love you so dearly. Your father suffers the most. I think his heart broke the minute you were born and you are now the glue holding it together.  Your dad will move heaven and earth for you and, like me, he’s equally proud and sad to see you growing up so quickly. He takes such great care of you and you continually reward him with kisses and poo nappies in the morning. It’s awesome!

I hope that you don’t stop being such an affectionate child. Your hugs and kisses make the most stressful day seem blissfully unimportant and other people appreciate your cuddles more than you could imagine. I also hope that your first word isn’t boobies but you seem to be heading that way – Daddy’s child.

Stay strong kiddo. You’ve endured being born by C-section, reflux, many injections (they were good for you!), being locked in a car (by accident and you slept right through it), learning to crawl on a tiled floor, teething and numerous bumps from playing under the coffee table. You did all this and more with very little fear or tears - it’s admirable. You’re braver than most grown-ups and this is a strength that will come in handy as you grow older.

Finally, just be you. Daydream, hug your friends, go swimming, make big splashes, try new foods, don’t watch TV if you don’t want to, share your toys…do all this and everything else you like to do without hesitation or reservation. Your father, family, friends and I will always be there to guide you, protect you, encourage you and, most importantly, love you just the way you are.

Happy first birthday my little monkey…and here’s to many, many more happy birthdays to come!

Love you,

Mommy

Christmas countdown

As 2012 races towards its end, we look forward to the holidays and, of course, Wren-Lee's first Christmas.

Now, the song goes "All I want for Christmas is my two front teeth.." but Wren's already got those at the bottom so maybe the top two will appear as her gift. With all the festive cheer about, don't underestimate a child's ability to realise something's going on. 

Wren discovered Christmas decorations. Every time we take her into a shop, her little head whips to and fro looking for the decorations dangling from the ceiling or standing on a shelf. She gets terribly excited about them and we think we might have a small problem with our Christmas tree's emancipation from storage coinciding with her learning to crawl. Trevor's brilliant solution: leave fake gifts under the tree so she's drawn to them instead of the tree itself. 

It was this magnetic pull towards anything Christmas related that lead to the so-called Christmas outfit. My mom took her along to the store one day and decided to go through the baby clothing section. Wren grabbed a bib from her pram and my mom thought it was a sign that she must buy the matching romper. Together, they are Wren's official Christmas outfit. (See below) 

I had a good chuckle when I got sent the photo of this get up and thought it utterly ridiculous. After seeing it in person, I couldn't help but love it and now I'm embarrassed to say I'm looking for those baby reindeer antler headbands to go with it. 

No judgies; I'm a mom who likes to dress my kid up every now and then. 

And while I don't believe in getting Wren's a gift just yet because she still too young to understand the gesture, her father has already picked out her gift. Guess that means I'm going to have to wrap it and let her go a bit crazy on it come Christmas morning. 

Are my crazy friends and I having our Christmas party again this year? Yup, we are! Let me give you the stats: 24 people, a menu of more than 10 different dishes and 14 bottles of champagne. How many babies at this shindig? 0 :-) It's going to be quite a night! 

I still find it hard to believe that last Christmas I was very pregnant and had no idea how Wren would change my life for the better. I can't wait to see the excitement on her face when she rips the paper off her gift and have her sit with us at the table for Christmas lunch. What's even better is that my family from Pretoria is arriving in Cape Town and they'll meet her for the very first time. 

It may sound cheesy, but Wren-Lee is truly the best Christmas gift ever! 

Hell week

They say that when it rains, it pours...and that was certainly the case during what I shall now refer to as "Hell Week". Ten straight days of back-to-back disasters.

In the second week of my new job, my folks were in Durban and Wren-Lee was with my mom-in-law. On the Wednesday, she hurt her back and Trevor had to rush off to go and pick Wren up and take her back to work with him. That night were were supposed to attend the Linkin Park concert and Wren was meant to sleepover at my in-laws. After loads of phone calls and going back and forth on babysitters, I reluctantly decided to skip the concert. I sat on the couch that night sobbing because Linkin Park is my favourite band and my dream to see them perform live went up in smoke. I still haven't had the courage to look at the tickets again and it's been weeks since this incident.

Aside from the concert being a bust, we had a bigger problem: Who was going to look after Wren-Lee the next day? Trevor was flying to Durban at 6am and I absolutely had to be at work. Everyone we could think of was at work and we weren't prepared to leave her with someone she wasn't entirely familiar with. It was a complete miracle when our friends, Clint and Tanya Morris, called and said they'd rearranged their day to help us and take care of Wren. Nothing comes close to the relief we felt and the extreme gratitude to our friends who went above and beyond for us.

Wren was fine the next day and thoroughly enjoyed her time with Clint, Tanya and Chloe. That night, she accompanied me to a dinner with my new colleagues and charmed everyone. Everything was fine until the next morning. While I was busy getting ready, I put her on my bed with pillows to protect her. One second she was facing away from me and was right up against the pillow and I literally turned my back and then heard the thud. My heart stopped beating and I knew I would find her on the floor. Thankfully, she was perfectly fine, not a bump, bruise or scratch on her but that was the last time she was left on the bed unattended.

At this point I thought things could definitely not get worse...and then it did. I went to a shopping centre to pick up some goodies en route to a friend's house. Wren fell asleep in the store and I put her pram in the car's boot and then put her into the car. The car key was in my way and I through it into a cup holder. When I closed the car door, there was a click and the car locked itself with the key inside. Panic ensued. Thanks to some very helpful guys, it took 40 mins and a broken window but we managed to get the car unlocked. Wren slept through the entire ordeal. Trevor had to rush from the airport and found me in a bit of shock. The reality of what happened only hit me after the fact and I was quite emotional for the rest of the day.  My friends, sweethearts that they are, were on hand to medicate the situation with a healthy dose of vodka and cranberry. It worked well!

The crowning moment of the week came just a few days later. I pulled into my in-laws driveway to pick Wren-Lee up and my clutch broke. It was divine intervention that it happened there instead of on the freeway or, worse yet, when Wren was in the car with me. After quite a mission to get the car towed the next morning and trying to figure out how to get to work, I got the news that my entire clutch system needed to be replaced to the tune of a few thousand rand. By the end of that week, I was emotionally and financially depleted.

Looking back on it now, I can laugh at the comedy of disasters the week was. I'm thankful, however, that Wren was spared any harm or difficulty because she came a little too close there.