Recent pic

Enjoying lunch in the high chair at the shops. She’s so cute!!

Showing off her scar which is healing nicely.

Recent pic

Enjoying lunch in the high chair at the shops. She’s so cute!!

Showing off her scar which is healing nicely.

Strength to strength…

It’s been a while since I updated the blog on Chloe! Mostly because life with Chloe is busy, hectic and tiring! Like most new mums I imagine.

Finally, after 8 months, it almost seems within in our reach that we can have a ‘normal’ family life at home with a baby. Whatever that looks like?! Hospital visits are decreasing… impending surgeries are years away (God willing) and the need to have Chloe so closely monitored is not as important.

That said, we have seen the cardiologist nearly every 10 days since we were discharged from hospital. This is due to some persistent fluid (pericardial effusion) around her heart. Not enough to cause symptoms, but enough to baffle her doctors. We have tried three different ways to get rid of it…to no avail. So it looks like its here to stay! I asked the cardiologist if that’s quite normal, to just have a little, and it’s not, but he isn’t worried. I was hoping this morning he would say ‘see you in 6 months’…but he didn’t! But I’ll take three months between check ups!

The Glenn procedure seems to have really made big changes. Chloe is growing rapidly. Well, rapidly for her! She’s still tiny for 8 months, weighing only 6.4kgs. She’s about 64cm long, having put on almost 1.5kgs since the Glenn, and grown about 5cm! Which is fast for her. She’s growing out of her 000 clothes in length, which means shopping! YAY!

After four months of trying to get Chloe to eat, she makes some progress, actually opening her mouth for some purees and swallowing it! The first time this happened I was pretty excited, with only Mini to tell! I’m so thankful that I fought for early intervention and got speech therapy for her. Without this invaluable help I don’t think Chloe would be feeding and her aversions would be much more severe. It seems she has a ‘savoury’ tooth…preferring veggies and meat over custards and fruits. Though give her a strawberry and she goes to town! I don’t think she actually eats it, just likes to suck on it and make a huge mess!

I feel the same way about physiotherapy. I fought for early intervention and Chloe gets therapy every fortnight. I do some exercises with her and she has made massive progress. I don’t want to get ahead of myself, but I don’t think she’s that far from crawling. She loves being on her tummy, but hates it when she can’t get toys, or her dummy. So she pushes her legs up and tries hard to move forward to get things! And rolling, you can’t stop her! She seems to have boundless energy which is so surprising! She kicks her legs so much and is so squirmy it’s very hard to to change her!

She’s also a talker… loves babbling and talking. She says lots of sounds including mumumumum, dadadadada and bububububub. Go Chloe!

And since it’s no longer a secret…I’m heading back to work. Part time. My school has allowed this part time arrangement in order for me to be able to attend to Chloe’s needs on the other days which I am grateful for. We’ve hired an in home carer, kind of like a nanny, and she will be with Chloe and is able to do food therapy and physio with her. And hopefully she will settle in to a routine. I think I will miss her more than she will miss me!

It’s hard to believe that about this time a year ago we received the news of Chloe’s heart condition, and that the future was so unclear and often seeming so bleak. Mike and I never bought clothes bigger than newborn, and were tentative about so many things, fearing the worst. And now we approach her 1st birthday in a few short months and the future looks bright, though with SLOS diagnosis there is a lot still very unclear. My journey into motherhood has been a rough one, before and after Chloe was born. And only now am I starting to accept that Chloe can be ‘normal’, and although there are constantly issues and worries, I can finally breathe and enjoy her. It almost seems like we’ve all held our breath for months… before she was born we were so unsure. Then we waited for heart failure, then we were post PA band, pre Glenn… then we were post Glenn… and now I try not to think we are waiting the Fontan. It’s too far away to factor in to the big picture. I’m just looking forward to the crazy days of Chloe crawling, walking…talking! She’s such a joy. She really is a happy little camper!

 

Chloe is choosing presents from the toy catalogue.