This might be controversial…

Something I’ve been pondering the last few days is the question I constantly get asked about Chloe’s heart…’Did you know about it before she was born?’ I’m not sure why I get asked this question, it’s either out of curiosity, like ‘were you prepared for it?’ or it’s do with the fact that the questioner might not have continued with the pregnancy had they been told their child had a heart defect or syndrome. I have consistently been asked this question by doctors, nurses and people I meet.

Before I continue with my ponderings, I should mention that while I don’t ‘judge’ others for making heartbreaking decisions, I know what it feels like to wrestle with the question. I said it in an earlier blog, way before Chloe was born. That wrestling with a decision like terminating a pregnancy due to medical reasons is extremely tough, and I wouldn’t judge others who take a different path. But in a sense I guess I kind of do judge. Though I do understand why they made the decision they did. I think that’s because my values lie in the fact that each life is precious, whether it’s ‘earthside’ yet or not.

I’ve been thinking, what if you had a child, and say, at the age of 2 they were diagnosed with a rare cancer or illness that would cause them suffering and pain?  Would you be given the option to just ‘give up on them?’ Let them have palliative care so to end their suffering? No! The medical profession and every parent that I’ve ever come across when faced with these sorts of heart wrenching struggles would fight for their child’s life. They don’t give up on them, so why are we given this option before they are even born? Making the rationale that the baby will have to suffer at times and struggle.

I’m not a doctor, obviously, but I know that it’s not long after conception that the heart starts to beat. They can detect heart beats in ultrasounds as early as 4 weeks. The heart is beating! There is life there! The Bible says that God knew us before we were even born, from the moment of conception He had a plan and path for each and every life. Doesn’t this mean life has begun? I know we celebrate birthdays as the ‘progression’ of life I guess, but I wonder at times should we not celebrate life before then? There is a little life growing and preparing to be born, and that life needs an advocate even before being born.

I was astounded in the pregnancy that the doctors would often talk to Mike and not me about a medical termination, kind of like they knew that it was never an option for me. I firmly believe in fighting for that life, and now that Chloe is here, and is doing well, I continue to celebrate that life, and not for one minute regret the decisions we’ve made to bring her here. Though I know many would. I wonder if there will ever be a time that people will terminate pregnancies just because that life isn’t  ‘perfect’…or perfect in the sense that we see perfection.

There may be someone out there reading this having faced this same decision and taken a different path than I did, I cannot imagine the heartache that must cause. There may be someone reading this that took the same path I did, and they have watched their child suffer at times, which is also heartbreaking. I cannot imagine what it must be like to never get to cuddle your baby, or see their little face or hear their voice. Though I have experienced a miscarriage, I cannot think that this brings the same heartache to a person that has made the decision to let their angel go. I constantly said to Mike during the pregnancy that I just wanted one cuddle, one smile, maybe even hear her laugh and giggle. For me that wish came true. But I know for me, as I look at Chloe and how gorgeous she is, and the joy she brings Mike and I and our families and friends, that without doubt, her life means something, and it meant something even before she was born. Yes, in the coming months she may suffer, in fact, I’m sure she will. Chloe will undergo a Cardiac Catheter procedure (16 May) and following that, the Glenn procedure (open heart surgery, more on that later), none of that is a nice prospect. But God willing, til then, and after then we will enjoy more cuddles, smiles and giggles, she will reach more milestones (hopefully) and laugh more than she will cry or feel pain. And those moments of suffering will be just a blip, a hiccup in her life that she won’t remember, though she will bear the scars of.

There are so many stories out there of people who have had children who aren’t perfect by the world’s standards, and yet they live happily and bring much joy to those around them. I am constantly inspired when reading stories of families in the ‘Heartkid’ community who stand by their kids and fight for them. I’m inspired by those who have lost their babies and children because of heart defects, they are strong and have experienced such loss, but enjoyed much love too. They usually speak of their child with such joy in their eyes, and gratefulness that they got the chance to know their child, they never seem to regret that they brought them into the world. I will never have a true answer as to why Chloe will have to suffer the things she will, or why she will have struggles living life with a rare syndrome, but I know that while she remains ‘imperfect’ in the world’s eyes, she is perfect in God’s eyes (and mine!)…and one day she will be made whole in heaven (though not too soon I hope!)

Some things I’m learning…

It’s been a while since I updated the blog on how Chloe is going. A lot has happened in the last couple of weeks, but the end result is that Chloe is almost 4 and half months old and doing really well!

About a fortnight ago, I noticed Chloe was not feeding well at all (in comparison to what she is usually like!) and just didn’t seem herself. Usually she is very chatty and smiley but she was very clingy and seemed quite unhappy. After a couple of days like that, I decided to call the Cardiac nurse at the Mater to get advice, the short story being that I ended up calling my mum (Mike was at work) and asked if she would drive to Brisbane with me to take Chloe to Emergency. We spent 7 and half hours waiting in a cubicle to be put on the ward for observation. Chloe absolutely screamed the Emergency department ‘down’ for several hours, she was inconsolable.

Turns out she just doesn’t like public holidays! Our last hospital stay was over the New Year! This stay happened across the Easter weekend. Very annoying because nothing, absolutely nothing is open near the Mater on public holidays, so food and coffee are scarce! It turns out that she may have had a virus or may not have had a virus! I think the exact words were ‘the blood test didn’t indicate that she did or didn’t’…helpful much? She also had severe constipation, which was probably making her VERY unhappy. I was lucky that the night they medicated her for it, was the night Mike stayed with her, so he enjoyed a delightful ‘poo-nami’!

Since then, we’ve had a sleep consultant visit to help me with Chloe’s settling, and although this is a work in progress, she is improving, and feeding really well! Finishing bottles in the last few days is becoming the normal which is awesome news. We are still battling some issues with her bowel (too much information!) and are off to the paediatrician again tomorrow. I’m hoping it settles soon, otherwise it might be that she has a milk protein intolerance which will require switching her formula to a prescription only.

All that news aside, I’m learning some new things about motherhood, and specifically some things about being Chloe’s mum…

1.  Parenting a ‘special needs’ kid comes with a new level of mummy competition. This started when I was pregnant with her and I had some people telling me that their kid’s heart defect was worse than Chloe’s…. kind of like ‘my kid is sicker than yours’ instead of the ‘my baby was walking before yours’. This totally throws me for a loop because I just don’t think like that. Any time that a baby is unwell, no matter how serious, is upsetting.

2.  I should keep a bag packed in the car for the unexpected hospital stay! This has happened twice now, so you think I would learn. I’ve had to make a mad dash back to the Gold Coast for an overnight bag for both Chloe and I. And yet as I write this I still haven’t organised anything.

3.  It would seem that while in hospital I’m incapable of feeding my own child. The in house pharmacy would not issue me a tin of formula to make myself, they have a rule where they must make it ahead of time for you. After many phonecalls and conversations, there was still no resolution to how we would have the formula so I could manage her feeds without supervision. That is until Mike arrived at hospital with a tin! Apparently if you come with your own tin you are ‘allowed’ to feed your child yourself! Hilarious.

4.  From now on Mike will always stay with her the first night! This is because he’s a man, and this ensures you get a private room, as they don’t put kiddies and their mums in the same room as kiddies and their dads! This lesson is invaluable!

5.  Babies do incredible things when you aren’t looking! I’ve mentioned before about a play mat that Chloe likes, it has a monkey hanging on it, when you pull the tail it plays music. She loves this, and has now figured out how to grab it and make music! I didn’t see her do this the first time because I was in the kitchen and next thing I heard the music! Clever girl.

6.  Women cope with sleep deprivation better than men. (no explanation necessary).

7.  Chloe, although ‘special’ usually just acts like a normal baby!

I will continue this list as things jump into my brain!