Wednesday, December 8, 2010


It's been two days since Maddy has been home and we're all still getting used to it a bit. Lana has been really good with Maddy, but she's been a little bit extra needy with Bernard and I. The night that Maddy got home was pretty awful - Lana woke up around 11pm and didn't go back to sleep (in our bed) until 2am. Much of that time, she was screaming and keeping us all awake - but Maddy slept right through it! The next night, she didn't want to go to her bed at all, she wanted to sleep in our room. We made her go to her own bed, but when I was feeding Maddy at 5am she woke up and made her way into our bed.

Maddy has been mostly pretty good but she's been a bit unsettled and has been crying for no reason (either that or I just can't figure out what the reason is, no matter how much I try different things!!). I'm sure that coming home has been a massive upheaval for her, she has lived all her life in one room, mostly in one bed, and now she's in a strange place, going outside, feeling the wind and the sun, smelling the fresh (or not so fresh) air... all wonderful things, but I'm sure it could be pretty frightening for such a little one.

Bernard has been working from home these last couple of days. It's nice having him around to give me a hand if things with the two girls start spiraling down fast! But he is still so busy with work - he wasn't able to get "time off" because there is too much going on, so he is still working full days but just at home instead of at the office.

Looking after Maddy is a full time job! The hardest thing in looking after her is feeding her- it makes me grateful for just how easy Lana was! With Lana, I always just breastfed on demand, and with her I could rely on her to know when she was hungry and when she was full. With Maddy, if I fed her on demand, she'd need to go back to the hospital with an NG tube because simply, she wouldn't be getting enough to even stay hydrated. 

Instead, I need to feed her mostly by squirting milk into her mouth and waiting for her to swallow it. The first part of her feeds, she will take more actively, so it's not so much work - but after she's decided she doesn't want to work for her food any more, that's when the fun and games start! It's often a long, slow process of just trying to make sure she can at least MOSTLY finish her feed before she's too traumatised to have any more. And it's a fine line before trying to get the food into her quickly, or trying to make sure I don't overdo it and make her cranky faster. Each feed takes us about an hour until either she has finished the feed, or more regularly, she has decided that enough really is enough!

Putting it into perspective though, I think it's just been a week today that her NG tube was removed permanently, so she's only had one week to practice and learn how to fully take oral feeds. I'm sure that it will get better with time, and truth be told, it already has been improving (slowly though!!)

We've been mostly staying at home but I did take her to our family doctor to get her four month immunisations, and I did need to run out to get a couple of things at Times Square (that webpage has the coolest intro!! Check it out!!) so I took Maddy along for the experience too. It was great to go out with her, not so great to feed her while we were out instead of in the comfort of our own home! I'm sure I probably "broke probation" since we're still on home leave rather than formally discharged, but I don't think that any of the nurses saw me! ;) 

Despite how hectic it has been, it's soooo good to have Maddy at home with us all and to not have to go up to the hospital! Our "home leave" was extended until Friday so we will go back up there then for the day and if everything goes smoothly, Maddy will be formally discharged then. She will also have a follow up ultrasound on her hips to see how the harness is working, I have an appointment with someone in order to get a disability allowance for Maddy, and we have another appointment with all the multidisciplinary doctors to discuss how we need to look after her at home and what things we will need to follow up when.

I'm looking forward to when we're all a bit more settled into our new routine and can all relax a bit more! I know it won't take long :)


  1. Lovely pictures! You have two prettiest girls! :) I hope things will get easier for you soon!

  2. The pictures are great, I love her little smile in the second one. :) It is hard on the older sibling to give up being the only child. It will get easier on her (and you!) with time. I hope her Friday check-in goes well and you are officially discharged! :)

  3. wonderful news.
    she looks so happy in the pics...
    youre doing a great job
    look forward t more news soon

  4. Hi! My son Kai has DD too. He's now two years old and doing great! I haven't read all your posts yet, but I know we have lots in common. I started blogging also ( It's so great to network with other parents of LP kids!!