First AFL game!

It’s no secret, I hate football. I find it boring. But it’s Mike’s favourite thing to watch. So, yes, unfortunately, last weekend marked the beginning of the AFL season. YAWN! Poor Chloe. Mike is convinced that she will grow up to watch the Adelaide Crows with him. So last weekend she was dressed in the ‘tacky’ Wonderwoman onsie that Mike picked out because of it’s Crows colours (and obviously who wouldn’t want to be dressed in a superhero outfit!). Photographs were taken with her ‘First football’ to mark this milestone. I also have one of her screaming which probably depicts more how I feel about football. 

There’s not much news on Chloe since my last post. She is continuing to feed every 2-3 hours. Even through the night. But I’m trying to establish a routine of feeds throughout the day. This is a work in progress. Though I’m happy she continues to feed orally, as many children who have SLOS (Smith Lemli Optiz Syndrome) struggle with feeding orally. I still continue to feed her bottles of breastmilk and top ups overnight with formula which she tolerates quite well. Some children with SLOS also have issues with reflux, and we suspect she may struggle with silent reflux. However, giving her the medication orally is a problem since I already try to fit in her daily Lasix medication. So what I currently do is feed her and keep her upright after the feeds, the swing we have is a godsend! She loves it and falls asleep in it easily. Though day sleeps are a struggle and she usually only sleeps one sleep cycle at a time – which is 45 minutes.

Some of the other things that she loves are baths! But hates getting out of them. She also seems to like watching tv, which is possibly a bad thing! Perhaps she takes after her father. I think it’s just the noise and the bright colours. She is also quite noisy! Not just when crying. But seems to love a good conversation and makes lots of little noises in response to being talked to. These are all excellent signs for her development.

Her scar is healing very well, it’s impressive how clean it looks. I’ve started calling it her ‘cleavage’! Which is probably somewhat inappropriate but you do what makes you laugh and keep lighthearted about things.

 

A syndrome is diagnosed…

Well since coming home from hospital about four weeks ago, Chloe has really been working hard at the weight gain! And so have I! I find it so funny that when I was doing weight loss I would make sure I would do anything to weigh lighter at each weigh in! Like going to the toilet before hand – way too much information I know! And with Chloe it’s the opposite… a wee or a poo can be as much as 30 or 4o grams. That aside, she has been doing really well. When we left hospital post surgery she was almost 200grams under her birth weight, about 2700 grams. Now she has put on about 1kg! As of Friday she weighed 3780grams! I was so excited to see that number.

This is because on Monday I thought she was really lethargic and very poor at feeding. She just didn’t seem herself and it appeared like she was losing weight. After a day of freaking out, I finally decided to take her over to the hospital for a quick check up. As she could’ve been showing some signs of heart failure. I asked them to check the size of her liver as this is also a sign. But all was good. What was funny is that after a whole of day of sleepiness and poor eating, she put on quite a show for the doctors, cooing and making lots of lovely little chatty noises, smiling and taking a bottle! It’s always the way isn’t it. But still a great relief. I guess though, frequent visits like that to hospital will probably become quite normal for us in a lot of respects.

We also received some news on her blood tests this week. It’s with a somewhat heavy heart that I tell you she has been through two blood tests now that confirm she has a syndrome called Smith-Lemli-Optiz Syndrome. I did mention this some time ago.  The second blood tests also confirms it, though the doctors are saying it isn’t ‘classic’. I had no idea what this syndrome is and of course started googling away as you do. Some information is very scary and as yet, we really have no answers about how affected Chloe is, apart from her heart condition which is part of it. The news of her little webbed toes on each foot is also a major indicator. We are waiting for an appointment now with the geneticist to find out more, but have to wait until March. At this point we know it’s a spectrum disorder, ranging from mild to severe.  It is a metobolic condition where the body does not produce the healthy cholesterol and this in turns affects development and feeding/weight gain.

Mike and I both wonder at times what God’s purpose and plan is in all this. To us she is so perfectly formed and brings so much joy. She looks beautiful and behaves like most normal babies, at least I think she does. She is rolling on her side, starting to giggle and squeal in delight, is alert, can hold her head up and many other little milestones that of course we are now looking at closely and studying!

We really don’t know how to say it or voice our worries about what the future holds for Chloe. What I know is that each day is a true blessing and I like to drink in all the moments I have, except perhaps the screaming at 2am! Sometimes I just sit and watch her play on the playmat and marvel at her! I love trying to make her smile! If only I could catch the smile on camera… One day!

Getting checked out at Robina hospital