Tuesday, April 21, 2009

A long update

Finally....both Gracie and Morgan are asleep for their naps and I am hoping that they will stay asleep for a while, they both need it.

I thought I would take this time to attempt to update the blog and share how being home for 2 1/2 weeks have been. It was rather bumpy in the beginning, in some ways it was worse than bringing her home the first time, but in other ways this was nothing compared to October. However, Gracie definitely 'bounced' back quicker than I thought she would. Its hard to imagine that she was just in the PICU two weeks ago, looking at her now she looks great!!

We just had a cardiology appointment yesterday and our cardiologist is very pleased with where Gracie is and where she is going. Her chest x-ray looked amazing, it was so clear you could almost see the details on the coils and wires in her chest :) Of course they want her to be on less oxygen and she seems to be tolerating the weans I have been making, she came home on 1 liter, has been on 3/4 liter for the last few days and an hour ago I dropped it to 1/2 liter and she is tolerating it great even while she sleeps. But I don't think the day will come where we can get rid of the oxygen permanently--if she pushes it out of her nose, her sats drop to the 60's so quickly. Even though oxygen is a tricky thing to live with, it is the least of our worries.

We go back to cardiology in a month and then we start the major wean off of Gracie's beloved diuretics. Hopefully she'll do better now that she is so far out from her surgery. We were given the ok to switch back to fat containing formula!! We are slowly working our way back up to 27 calories, I hope that she can tolerate it because we really need to get her growing. Gracie only weighs in at 6.02 kilos, that's just a little more than 13 lbs. Which don't get me wrong is an ok weight, but she is quite long, so she just looks so much skinnier.
Gracie still has her NG and lately has been getting most of her feeds through it. Last week before we went in to have her broviac removed, she was orally feeding all of her daytime feeds, but I don't know what happened, she digressed and has only been drinking 30cc, if we are lucky. Hopefully it is just because she is teething or something and she will start eating more, she really seemed to enjoy it. For the most part she did great, she would spit up some, but I think it is just because she isn't use to getting fed that fast, so we are working her tube feeds up in how fast they go through.

I have been letting Grace mouth different types of foods and she seems to love it. I'll give her bitter biscuits or animal crackers and she will chew/suck for a while and even leave a remnant on her shirt! Sunday she got to taste lifesavers and some fresh pineapple and couldn't get enough. I think I will try some baby cereal in the next few days.

Still no full out giggles but whenever we play I can hear whispers of them and it just melts my heart, I just can't wait to hear that sweet little laugh. No cooing either, but she sure tries. Occasionally she'll let out a little 'ahhh' and I think it surprises her. Gracie is so happy and full of smiles these days, all you have to do is smile big at her and she'll give you this humongous smile. Even when she isn't feeling well we get smiles, but they are the tight lipped smiles that you can tell she is just trying to appease us.

Physically Gracie is doing well too, we are back to where we were pre-surgery. Gracie is grabbing her feet and even trying to suck her toes. She rolls to her sides, but just won't roll onto her belly. Tummy time can be tolerated for almost 10 minutes before she lets us know she is done. I have sat her in the bumbo and in the high chair and she even tolerated that well. She still has very little trunk control and no desire to put any type of weight on her legs....but she will get there, I know she will.

Morgan and Grace are best friends, Morgan tries to play with Gracie and Gracie can't take her eyes off of Morgan. The other day instead of saying we were going to the doctors, I accidentally told Morgan that I was taking Gracie to the hospital. Morgan got a concerned look on her face and said no, Gracie no stay there. Morgan is a great big sister and loves and adores Gracie.

I was making dinner last night and went to check on the girls only to find that Morgan had dumped the basket of diapers all over Gracie. Grace doesn't seem to mind though.

I know this is a long post, I'm sorry. I just needed to get all the updates out there. I should go, I'm debating closing my eyes or folding laundry before someone wakes up.


Melissa said...

Gotta love sisters. I'm glad she is doing so well!

Gina and the Gang said...

Still checking in on you from Northern California...great to see that little cutie is doing well!

Holly Rader said...

Grace looks great. I love the picture of her and Morgan with all the diapers. That is so adorable. I hope you are doing well.

Stacy said...

What a cutie your little girls are! I love Gracie's tongue. I am so happy for you that things seem to be moving in the right direction. We continually think of you guys! Good luck with all your weans. Thanks for the updates!

emily and kevin griffin said...

take a nap...i'm sure you don't get enough of those...:) we are so happy to hear that Grace is doing well! she's just so cute!

lori said...

We're so glad for the update. Sure love those beautiful girls. Deanna, will you e-mail me your address? (I'm still at my byu e-mail)

Ryan and Hilary said...

Thanks for the long update. I am so glad that she is doing so well. She looks amazing!!!

Douglas Lai said...

I'm glad to hear that all things considered grace is doing well. She looks great!

Kyle and Alli said...

Oh she looks wonderful. I am so glad that things are going a little better at home. Your girls look adorable!