10 weeks old!!!

Cutest little voice :)

9 weeks & 5 days old

Tickly feet!

9 weeks & 4 days old... more photos

First stroll :)

Last night we took our first stroll ever :) It was such a beautiful evening. Plus sixteen degrees, sunny, no wind. The perfect weather... I snapped a few photos of course. I am loving this Winnie the Poo travel system! It's like a cozy little bed on wheels. I've been rolling her around the house in it too lol... she loves it.

Oh, and I have a prayer request for you... there is a woman named Lisa who I recently met, and she found out about 5 weeks ago that her baby is special like Faith. It's a scary and emotional time when you're pregnant with a baby who doctors say has "no chance" of surviving (even though we know that's not true!), so please send up your prayers for her and her baby as you have for me and Faith. She doesn't know if she's having a boy or a girl yet, but I'm sure she will be finding that out soon. I know I should be posting more prayer requests here... other people coming to my mind right now are Holly (the mother of baby Carleigh) and little baby Benjamin, who is on his way. If you could keep those people in prayer that would be great!

And as always, thank you for your continuous prayers for Faith and I :)

9 weeks & 1 day old

It's a beautiful day outside! Well maybe a bit chilly, but nice and sunny. It's suppose to warm up a lot this weekend and I'm excited to try out our new stroller :) Me and Grammy did Faith's bandage change again this morning and it went well. My friend Jennifer might come over later to snap some pictures with her good camera. My camera is not the highest quality, as you can tell ;) Okay so who wants a good laugh? With all the criticism I've gotten about doing too much for Faith, someone actually threatened to call social services on me for not doing enough! The reason was because she saw a little video clip of Faith wheezing and thought I was neglecting to treat her. Seriously??? She's on three kinds of medication for her breathing. Speaking of Faith's breathing, it's time for her a mask now. Thanks for checking in.

This is too cute...

9 weeks old


flashback... 3 days old

It might surprise you to know that Faith is capable of taking milk by mouth. She went without a tube for the first 25 days of her life. A tube feed was inserted when she lost too much weight as a result of not getting enough milk. It takes more effort for her to coordinated her sucking and swallowing than most babies, and she tired before getting enough. She also has a partial cleft palate and that makes eating more difficult too. It doesn't mean that she cannot eat on her own, but rather, she was not eating enough. Many babies with special conditions need feeding tubes in order to get their required intake. They are often just temporary. The tube is a very soft, flexible plastic and does not cause discomfort. Faith makes more of a fuss when I wipe her face then when her tube is inserted! I think she is doing really well, all things considered.

9 weeks old! :)

Faith is 9 weeks old today!!! Her uncle Phil is now home from university, so it will be nice to have him around. It has really been beautiful here lately... well it's been a bit rainy but the spring peep frogs are chirping and it makes for a really beautiful and soothing ambiance. There are marsh lands behind our house so we are surrounded by wildlife sounds here. It's supposed to get up to plus 20 degrees and sunny this weekend, and I can't wait to take Faith out for a stroll :) By the way... thanks to everyone who has sent encouraging messages and to all those who are praying for us! Ok, time for bed (it's 1:48 am here). Thanks for checking in.

8 weeks, 5 days old

Well, once again God has pulled some strings for us in order to provide for Faith's needs :) She has gotten a bit more wheezy since this cold, but I have been wanting to change her to a less harsh (but much more expensive) medication called Pulmicort. I've had her on Prednisolone for quite a while but that drug lowers the immune system and has other side effects... Anyway, I was told that Pulmicort is quite expensive, and Faith doesn't have any drug coverage. But as my mom swung by the clinic today to talk to our nurse practitioner, well what do you know... someone had just dropped off a bunch of Pulmicort and Ventolin that they didn't need anymore. The two drugs that Faith needs! So we were able to get her medecine for free :) Woohoo! I'm telling you, God is on our side.

Happy 2-month birthday, Faithy! :)

We're having a beautiful weekend over here... hopefully I'll get my hands on a stroller soon so we can start getting out for walks. Faith has been frisky lately, as you can tell by the video :) She's getting nice and chubby again and she has a lot more energy. Faith isn't completely over her cold but I think she's feeling a lot better now. She has been more wheezy since getting this cold, so I've had to increase her Prednisolone again (which I was trying to ween her off of). But as you can see, she is doing fairly well! I'm so excited about her turning 2 months old...

Grammy and I have done her last 2 dressing changes by ourselves, which is something we never thought we could or would do. It takes us a bit of time, but we're doing ok with it. I'm the one who takes off her old bandage and cleans everything and applies the new dressing, and my mom does the preparation and holds Faith in a sitting position while I work away, and she rolls the gauze around (something I think she'd be better at than me). So we have a system down... it's just a matter of getting used to that routine and getting more comfortable with it each time we do it. I'm happy that we have tomorrow off! We're doing it every second day now.

A friend I met through an online anencephaly support forum, PJ, recently had her baby boy. Baby Seth was born on Thursday morning and passed away later that evening. PJ must be dealing with a lot right now, as she's also recovering from her c-section. I cannot even imagine what she is going through... Please keep her and her family in prayer. http://www.babysethryan.blogspot.com/

Thanks for checking in... I'll try to post again real soon!

7 weeks & 6 days old

Sittin' with mommy

7 weeks & 5 days old

Lookin' good, girl!

Faith is 6 pounds & 8 ounces today... she's almost back to her birth weight! And that is saying a lot because she was a really chubby baby when she was born (she had 3 rolls on her thighs alone). Faith only weighed 5 pounds, 4 ounces on the day she had her tube feed inserted, so this is a big improvement. She's looking great :)

7 weeks & 4 days old

I hope everyone had a good weekend! Here are a couple videos that I took this morning.

Waking up

Cooing

7 weeks, 3 days old

Well we got a lot of snow this weekend! Faith and I haven't stepped foot outside all week. She's had a pretty persistent cold and her nose has been stuffy and getting plugged, but her eyes are looking 100 times better. They actually look completely normal again, which to me seems quite miraculous. If you could see the before and after photos you would not believe it... anyways, it's Easter weekend! Uncle Phil came home for a couple days but he went back to university this evening.

6 weeks, 5 days old

Hangin around

6 weeks, 4 days old

6 weeks & 1 day old... getting frisky

Well I am finally updating my blog! At least I'm going to try to, as long as Faith keeps sleeping soundly. So we found out why her eyes were swelling. Well we don't really know what started it but it has to do with paralysis of the muscles of her eyes (I guess?). I know it's something like Bell's palsy but I forget the medical term for it. She is still blinking them but it's as if the inside of her top eyelids are falling out. The right eyelid needs to be "stuffed" back under and held closed but I managed to prevent the left eyelid from drooping out. As soon as I saw it start to swell up I taped it closed and you know what... it sounds crazy and looks odd but it actually worked. So now that the swelling is down the left eye still looks normal on the outside, but she has little eyepatches (well, non-stick pads that we tape over them) on both eyes just to keep them from getting any worse, and obviously to hold everything in on her right eye. Anyway... so that is the whole eye situation. Not too many issues other than that. Her breathing has been good and I'm weening her off the Prednisolone (it was every 6 hours and now it's every 12 hours) and the Ventolin. The poor girl still has a cold and she's at the stage where she's stiffing all the time and her nose gets plugged, so I've been puting the bulb syringe to good use. We had to make a trip to the ER at 3am on Saturday morning because her feeding tube slipped out, but no troubles there. Trauma was empty so we took her in there to get out of the waiting room and it was nice and quiet. The triage nurse had actually read this blog before and knew who Faith was, so that was cool! So we had a very early morning on Saturday... but that tube was looking grungy and needed to be replaced soon anyway, so this was a good excuse to do so. Faith's uncle Phil was home for the weekend and got up the nerve to hold her for the first time hehe... he's in first year university but sometimes he comes home on the weekends. I think next weekend is Easter (so I'm told) so maybe he'll be home again then. Last Easter Sunday I was baptized but I'm not sure if I'll even get to church this year. I don't want Faith to catch any germs, otherwize I would... Okay, that's all I have time for. Just wanted to update you all cause I know it's been a while since I posted. If I don't post again for a couple of days, don't freak! I'm just a very busy mommy, as I'm sure you can understand. Thanks for checking in!

41 days old

Poor little Faith has a swollen eye lid today... extremely swollen... and my efforts to bring down the swelling aren't doing much. Just dropping a note to ask for some prayer on that! She is doing well, though. As bad as it looks, Faith doesn't seem to be bothered by it in the least (until I put the cold compress to it... she can't stand anything cold touching her!). Anyways, that's all for now. Thanks for checking in!