It's hard to believe that Faith left us just 6 days ago... we miss her so much. 

My little sweetie <3

Looks just like her mama... ready to go outside

Time for some milk (8 days old)

Newborn Faith

The first few days after Faith was born were the happiest of my life. She was so talkative at that age! When she ate it was by mouth, and she tasted mommy's sweet milk. She always had a red face and a big gummy smile whenever she got feisty. She squeeled when I kissed her and cried when she needed to be fed or changed. She didn't need any medecine or a feeding tube. I find a lot of comfort in watching these videos :)


Mommy and Faith (3 days old)


"Wali" (3 days old)


My hungy baby (3 days old)


Very hungry baby... (5 days old)


Having some lunch (5 days old)

Memories

Mommy and feisty Faith

We spent the night holding Faith and reliving some of the wonderful memories captured of her on video. I will never get over her cuteness... her sweet little voice and all her little facial expressions, her feisty personality, the way she hummed to herself when sucking on her soukie... the way she looked like a baby bird whenever she would suck in her bottom lip, the little dip between her bottom lip and her chin, the way she would route around and suck on mommy's nose, her big exaggerated sneezes, all her smiles and grins... I am convinced that she was the most adorable little girl there ever was. I just keep watching the "Kisses" video over and over again. It never gets old. I will be posting many more photos and videos of Faith in the coming days and weeks... I'm sure it will be a huge comfort for me. I am so grateful for all the time I had with Faith and for all the photos and videos and for the memories we shared. And I can't wait to see her again... I don't know how she could get any cuter but I'm sure she is even more beautiful now that she is living it up in Heaven.

The best 93 days of my life...

were spent with my daughter. Faith went to Heaven today. We spent most of the day snuggling together in my warm bed. She was starting to go a little cold, but mommy kept her warm. I told her that I loved her many times. I was holding her in my arms when she passed away. It was around 4:40 in the afternoon. That was several hours ago now, but she still looks so beautiful. She is looking like a little porcelain doll. Her tube feed is gone. Her lips are still pink and her facial expression looks so happy and peaceful. God is good.

Thank you all for your prayers.

13 weeks, 2 days old

Asking for your prayers today. Faith is suffering from stomach bloating and bleeding ulcers, most likely the combined result of irritation from the feeding tube and prolonged use of one of her medications. We have taken her to the emergency room once, but we have decided not to take extreme measures to treat her (ie. surgery). I am trying to let her stomach rest as much as possible and giving her acid blockers. I am doing my best to keep her comfortable and diligently praying that God will intervene. Faith is wrapped up snuggly in her blanky and has been opening her eyes and blinking --not something that we see very often. I hope you'll keep us in prayer today. Thanks for checking in; I'll update you soon.

Happy 3-month birthday, Faith! :D

Faith turned 3 months old today and I couldn't be happier! She is doing very well these days. I'm just letting her tummy settle right now (she just ate) and then I think we might go for a little stroll outside. It's a gorgeous day out today but it's been rainy the past couple days and we've been cooped-up inside.

That's all for now! I may post a few new videos later if I have time. Thanks for checking in :)

12 weeks & 2 days old

Faith's Lullaby

(written by Mommy)

Faith, you are my baby girl

Most beautiful one in the world

You came into my life one day

And now I'll never be the same

Ten fingers and ten tiny toes

Rosebud lips, a button nose

You came into the world that day

And never will it be the same

12 weeks old!!! :)

Faith is 12 weeks old today. In 5 days she'll be 3 months old! :) My little girl is doing so well... she's been full of energy these past couple days and I started puting her to the breast again. I don't have much of a milk supply right now, but we are doing some practice nursing and she's been doing quite well! She's getting stronger everyday. Faith truly is a miracle and it's amazing how many miracles we've been blessed with in these past 12 weeks. She's bounced back so many times, and all thanks to God and those of you who have lifted up your prayers in Jesus' name. Just think... Faith was given a 0% chance of survival. Not even a 1% chance of survival --zero. They say her condition is "incompatible with life." I was told she would only live a few minutes or hours... a couple of days at best. But just look at her --almost 3 months old and still going strong. I can only thank God for that. Never forget, with God ALL things are possible.

11 weeks & 5 days old

Busy feet today!

11 weeks & 4 days old

The "baby bird" face

Very content in her stroller :)

Happy Mother's Day!

11 weeks old :)

10 weeks & 6 days old

Well, we didn't get out for a stroll today, but rainy days are nice once and a while. The rain can be kind of peaceful. Faithy is looking and feeling good :) And a mother knows when her baby is feeling good or bad, isn't that right, moms? I find I can pick up on the most subtle cues about what Faith needs or how she is feeling. We had to take a little trip to the ER last night to get a brand new tube feed, since they are only good for a month (ok, I'll come clean... I accidentally snipped her tube with the scissors last night when I was cutting her old bandage off lol). We met a young doctor there who was really nice. It really shows when a doctor has genuine compassion for his patients. And of course, the nurses were great too --as usual! A shout out to my peeps in the ER ;) Hehe...

10 weeks & 3 days old

Faith's new sweater... sooo cute lol (handmade by her great aunt Debbie)

Faith is finally starting to feel better after a few days of withdrawals from an attempt to lower her Prednisolone. I guess this ween is going to take longer than we thought! But the main thing is that she is comfortable. Check out the cute sweater my aunt made for Faith :) I like the pointy hood hehe... hope everyone is having a good weekend. Thanks for checking in!

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!

40 days old

Faith in her big girl PJ's

39 days old

Okay, I know I haven't posted pretty much all week but Faith is doing fine... I just haven't had any time to spend typing on the computer. I've been busy taking care of my sneezy baby. We had a pretty good week last week. I guess the highlight would be Faith's CAT scan, which was done on Thursday (her 5-week birthday). There were some doubts about whether or not Faith was misdiagnosed because of how well she is doing and because she is not "supposed" to have any consciousness and yadda yadda yadda, so we had a scan done just to see what was inside her head. The technicians who performed the scan had no idea about Faith's condition beforehand and afterwards asked me, "Does she have a malformation? She is missing skull bones, right? Okay... we just wanted to make sure..." Caught them off-guard a little bit! On Friday we got the results. A neurosurgeon, neuro-radio-interventionologist (big word), and a radiologist looked at the photos and they all agreed that the diagnosis of anencephaly was correct. They have no explanation as to how she is functioning on a conscious level without a cerebrum, or how she is even alive. It's the kind of miracle that makes atheists scratch their heads... This weekend we had some beautiful weather and I was able to take Faithy outside for some fresh +15 degree air. She is still wheezy, but getting stronger everyday. She's taking a drug for her lung inflammation that suppresses the immune system, so I'm not having any visitors for a while... she has already caught a cold, as you can tell from her sneezing video. I'm starting to ween her of this drug, but she is pretty dependant on it right now. Anyway, I've been so busy that I haven't been able to be on the computer much, so I apologize if you've sent an email and haven't gotten a reply. I have a lot of unread emails in my inbox right now... If you do want to contact me about something and you want me to reply, it may be best to write "important" or "please reply" in the subject line, or I may not get to it. Anyway, it's time for faith to eat so I have to go. Thanks for checking in!

The big sneeze...

32 days old

Gammy feeding Faith

Time for another update... Faith is 32 days old today and she is looking great. Her colour hasn't been the best lately because of her breathing difficulties, but right now her lips and fingernails are a nice healthy pink. Her skin is still a bit pale, but her breathing has significantly improved. The good news is, there is no sign of infection and her lungs sound relatively clear. Apparently the wheezing and rubbing sound is due to inflammation. Because Faith has lost so much weight, her muscle tone has wasted and her lungs are working extra hard to breathe, which is causing inflammation. At least, that is what I understood. That is really good news because it means she could gradually build back her muscle tone as her nutritional status improves and she gains some weight. She is still getting the Ventolin every 3 hours and we're also giving her Prednisolone for her inflammation. Her medecine seems to be helping. Her breathing sounds much better and she is taking deeper breaths. Today Faith's Gammy stayed home to help out with her care. I was so exhausted this morning that my mom fed her and gave her her Ventolin mask before I even got up. It's been a busy week. Oh yeah... guess what? Yesterday, when her bandage was being changed, Faith opened up her big blue eyes and saw her Mama!!! :) That was a first. I usually don't even see her eyelids because her dressing covers them. I look forward to watching her dressing change now because that's when I get to see all of her face, her ears, her hair... she is such a cutie! Such beautiful features that only a few people have the priviledge of seeing. Anyway, I should really be with my baby right now and not on the computer! Just wanted to post an update for her "fans" hehe... Thanks for checking in!

30 days old

Faith is still very weezy and working hard to breathe. Her lungs sound very constricted, but I'm not really sure what the problem is or what caused it... it could have been aspiration from before her feeding tube was inserted or the tube could have started it. I wish I knew what was going on with her lungs. I hope she doesn't have an infection. I've been giving her Motrin every 6 hours, so there wouldn't likely be a fever to indicate an infection if she did have one. I don't think this is normal decline, it seems more like something got into her lungs. Right now we are doing everything we can to treat the symptoms (within reason... it's not like we're going to admit her to the hospital), but until we know the root cause, there's not much we can do to solve the problem. I'm trying to relax but you know... it's hard to relax when your baby is having trouble breathing. Well I should go now, but just wanted to post a quick update on how things are going. Thanks for checking in!

Happy belated 1-month birthday, Faith!!!

Faith turned 1 month old yesterday! And she is here to see the first day of spring... I haven't had time to post because Faith has been having some breathing problems in the last couple days. Her lungs seem to be inflamed and she has been wheezing and working hard for her breaths. We've been giving her Ventalin to open up her airways every 3 hours, Motrin every 6 hours to reduce inflammation, and we have been spending every spare moment positioning her to help her breathe better. It has been an exhausting and scary couple of days. I don't really have time to be on the computer right now, but I thought I should post a quick update to let you know how she's doing. But now I must go tend to my babykins. Thanks for checking in!

26 days old

Well, so far Faith seems to be tolerating the tube feed well. I am gradually increasing the amount of milk that she gets at each feeding, and so far we are up to 20mL every 3 hours. I'm increasing the amount a bit faster than the dietitian recommended, but I want to get up to 30mL q 3hrs as soon as possible, since that is the minimum fluid intake she needs to keep hydrated. Once we're up to 30mL then we can start working towards her recommended caloric intake, which is waaay more than she's been getting by syringe. In retrospect, I have no idea what I was thinking allowing her to lose so much weight before inserting a tube feed. I was trying to avoid a tube feed, but I should have been keeping a closer eye on how much milk she was actually getting. When they weighed her in trauma yesterday, she was only 5 pounds and 4 ounces (with her dressing, hat, and diaper on). I didn't realize how malnourished she was but I should have... kind of makes me feel stupid for not addressing this sooner. Anyway, I'm just relieved that the tube is in and Faith can get all the nourishment that her little body needs. Grammy bought a souckie for her to suck on during feedings if she wants to. Hopefully she likes it... I know she likes to suck on my finger. Oh, by the way... Faith's umbilical cord came off today! It's an innie :) 

Here is a video that was taken on Saturday afternoon. It's just a random home video of me, Faith, and Grammy in the kitchen. Hope you like it...

 

6

6 min 40 sec (cutest sound ever)

25 days old

Faith turned 25 days old today! I haven't posted an update in a few days because I've been so preoccupied with her eating. I've always had trouble giving her enough milk by syringe but three days ago she took in almost none, two days ago she had a little but was having difficulty swallowing, and yesterday she stopped swallowing altogether. I decided that I couldn't let her go any longer without a tube feed, so today I took her to emerge at the hospital to see if they would insert one. It may seem like a shame to put a tube down a baby's nose, but it was either that or allow her to die of starvation. I think I made the right decision by continuing to feed her. I was expecting them to turn me away at the hospital because of her DNR order, but they didn't. In fact, the care was excellent! They didn't do anything to Faith that I didn't want them to (I told them not to "poke" her with anything). But they were right there with oxygen and warm blankets and anything else they could do to comfort us. We were brought to the pediatric unit and Faith's feeding tube was inserted. She was such a brave girl... didn't even cry. She barely complained at all. The dietitian and nurses gave me some education about how to feed her and check for tube placement, gave me some supplies, and then let us go. I was very happy that Faith didn't have to be admitted :) Well, I am going to snuggle up with my girl for a while... thanks for checking in. I'll try to update more often.

Happy 3-week birthday, Faith!!!

My little miracle turned 3 weeks old today! I was just thinking back to the day we brought Faith home from the hospital. They sent us home with a "do not resuscitate" letter, a memory box for someone who just lost a baby (pretty inappropriate if you ask me... it had condolences written everywhere... umm?), and some literature on bereavement... all of which I've wanted to burn since they were given to me. I thought the memory box was a horribly insensitive gesture, considering my baby was and is still alive, and the pamphlet on bereavement was totally impersonal and tacky... and also totally inappropriate! Here we were celebrating our victory trip home and they were giving us all this depressing crap (sorry, but it was!). But enough about that. Today is a beautiful but slightly blustery day (I think I've been watching too much Winnie the Poo because I have the blustery day song in my head). I was thinking about going outside again today, if the wind lets up. Right now Faith is sitting on Mommy's lap and having a little snooze. She's quite content as usual. I should probably lay down for a nap too. She'll be getting frisky for some milk soon! Thanks for checking in on her "birthday" :)

19 days old

Well technically it's now Wednesday, so Faith will be turning 20 days old today :) But since I haven't gone to bed yet, I'm going to pretend it's still Tuesday. It was really beautiful out today, so I took Faith outside for some fresh air. We went for our first walk :) I don't have a stroller, but I bundled her up close to me in that baby wrap, which might actually be better than a stroller this time of year. My body heat kept her plenty warm. Oh, and I guess strollers aren't very good for walks down on the marsh! Faith is doing very well. She is a nice healthy pink colour today. And she is looking prettier everyday, she really is. I don't know if I ever mentioned it before, but apart from a saline dressing on her head (which is changed once a day) Faith is living a completely normal life. It's quite miraculous, considering she was diagnosed with having "no brain." She is not only surviving, but seems to be thriving. And contrary to pretty much everything that the medical community believes about anencephaly, Faith is functioning at the same level as any "normal" baby of her age. In fact, she seems to be a little more advanced for her age. You don't have to take my word for it... I have hundreds of videos to prove it. And no, this wasn't a misdiagnosis... I have been asked that before. The only error here is the false information that doctors are being taught about anencephaly in med schools. They ought to open their minds and their eyes. Well, we should be going to bed now. Thanks for checking in!

Happy sweet 16, Faith!

Faith turned 16 days old today :) It's a beautiful day out... I wonder if sometime soon I'll get the chance to take her outside for a walk? You never know with Faith. I thought I'd upload some more pictures of her today. I can't believe how her looks have changed since she was born. She seems to get prettier everyday...

More videos

Here are a few more videos taken in the last two weeks... I'll probably add a few more later when I have time :)

Getting swaddled in recovery (just born)

Feeding time (3 days old)

Basking in the bili light (13 days old)

Startles to dog barking (2 weeks old)

Happy 2-week birthday, Faith!!!

Faith turned 2 weeks old today! :) I never thought I would get to say that. She has been getting some very nice presents from friends and family this week and I know I haven't been keeping up with my thank you's lately, but we really appreciate all the generosity! Faith has been doing so well. She is a very happy baby and loving life. I hope no one thinks that she is suffering in any way or that she is sickly. She is such a smiley little girl and as content as can be. She brings so much joy into my life and every day that she is here is a gift. I wouldn't have traded these last two weeks for a zillion dollars. Sure the first few days I was very emotional but now there is so much joy and laughter in the house. Faith is such a fun baby to have around. Well, you've seen the "big smiles" and "kisses" videos. That's what we are blessed with each day... so many wonderful moments. Faith's jaundice seems to have cleared up nicely and she is a nice healthy pink colour today. We're not going to stop her bili light treatment, though. I'm not really sure what the cause of her jaundice is but I know it could come back if I stop doing the light therapy. She usually sits under the light a few times a day while I'm expressing milk. She just has a little snooze and listens to music while Mamma sits beside her and get her next meal ready. Well, it seems to be helping. Either that or it's God's answer to our prayers (I'm pretty sure that's 99% of it). Anyways, I should go so I can get some milk ready for her. She's being a good little eater today so I have to keep up :) Thanks for checking in! 

Kisses

That is her squealing at the beginning of the video... she's too cute.

13 days old

My little girl turns 13 days old today :) She slept through the night last night and was too tired to take any milk, but thankfully she had a big meal around 8pm before we went to bed. I keep trying to feed her every 2 or 3 hours but she's too tired. I managed to get an ounce or so into her today, but that's all she's had since 8 o'clock last night. Hopefully she'll come around soon and have a couple meals before her dressing change today. Oh yeah... I keep forgetting to tell you about our recent discovery. It turns out that Faith can hear! When her bandage was off the other day, she startled to the sound of a package being torn open. When I yelled really loudly for my mom the other day Faith started to cry. And yesterday she woke up right when my dog started barking. So we are fairly certain that she is able to hear :) Anyways, I think we're going to lay down for a little nap. Mommy's getting tired... thanks for checking in!

12 days old

Faith is eating much better today, thank God. She had a big meal in the middle of the night and ate again this morning and this afternoon. I'm hoping to get one more big meal into her before her dressing change this evening. She is looking very beautiful today :) Wearing her pink kitty sleeper... I was just about to look up some videos online about how to use a baby wrap. I need to find a position that is suitable for carrying Faith around in. Her head needs to be kept elevated to prevent swelling (She herself prefers to be upright too. Have you seen the sitting up video??? I'll upload it now hah). Thanks for checking :) I'll update again later. 

11 days old

My little girl turns 11 days old today. She has been sleeping all the time and I've been having a hard time getting her to eat. Sometimes she routes around for some milk but then falls back asleep and doesn't swallow what I syringe in her mouth. She hasn't actively fed in about 24 hours now and I'm starting to worry... I don't want to resort to a tube-feed but at this point I'm starting to think about it. Okay, I'll update you again later. If she doesn't eat in the next couple hours then I'm going to call our nurse practitioner and see what we can do. Thanks for checking in.

Later on...

Faith had about an ounce of milk around 1pm. Not much but it's better than nothing. I think between the jaundice and the dressing changes, she just doesn't have the energy. Oh well, I'm going to keep trying. Hopefully she'll eat before our nurse practitioner gets here. 

Faith did have a bit more milk before her dressing change, and it's 8:30 in the evening now. We just woke up from a nap (well, I woke up) and it's time to try feeding her again. Her dressing change went well today and her colour is looking pretty good right now. Hopefully she gets into a feeding frenzy soon! 

It's almost bedtime now and I'm happy and relieved that Faith has had another ounce and a half of milk this evening. She is looking beautiful tonight. Her cheeks are nice and rosey and she's being her smiley self. I'm going to put her under the UV light for a little while and then we're off to bed. Thanks for checking in :)

10 days old

Well, we're into the double digits now :) My sweetie pie turned 10 days old today. It looks like that umbilical cord could fall off any day now. Her dressing change went much better today, although it still tuckered her out... she usually doesn't eat (or do anything but sleep) for several hours after her dressing change, so she only had two feedings today. Her last meal was around noon and here we are at 10pm and she still won't eat... she's just too sleepy. Yesterday her dressing change was very stressful for both of us and she didnt eat for about 12 hours afterwards. But I'm hoping she'll wake up with an appetite soon. Mommy's got lots of milk ready when she does. It always makes me happy and relieved when she finally comes around and has a big meal. Her colour is looking pretty good today. I think the UV light therapy may be helping. Well, that and lots of prayer of course. Okay, we're off to bed... hopefully my little girl won't sleep through the night again and will wake up to eat soon. Tomorrow Grammy is going back to work and I'll be on my own for the first time since Faith was born. I better get some rest. Thanks for checking in :)

9 days old

Just on my way to bed... so so tired. Faithy is doing well. Her dressing change was a bit stressful today (for both of us). I just hope she doesn't get any infections. The good news is she did pink up a bit today. Ok, I really need sleep! Hopefully I'll have more energy tomorrow. Tomorrow Faith will be 10 days old! Actually it's 12:10 am now so she'll be 10 days old in about 12 hours. We're into the double digits now. I can't wait until her umbilical cord falls off :) That will be a milestone. Ok it's bedtime now... thanks for checking in. 

8 days old

Faith turned 8 days old today! Mommy is happy but very tired... I haven't had much time for the computer lately but I just wanted to let you know that Faith is doing well. We started her UV light therapy today and hopefully it will help with her jaundice. She ate well today and frequent feedings are supposed to help too. The only thing that I don't like about the light therapy is that I don't get to hold her as much... but if it helps break down some of the biliruben in her system than it's worth it. I really don't like to see her so yellow. I am always so relieved when she starts to pink up. It kind of goes up and down. I need to push that breastmilk through her as best I can. I figured out a good trick for stimulating her to eat today and it's kind of cute. I sort of nuzzle her face with mine and put my nose to her mouth. She eventually starts sucking on my nose and then once she gets going I introduce the syringe. It really works! And did I mention it's cute? I'll have to get that on video. Anyways I really really need sleep, so it's bed time for me and Faith. Thanks for checking in on us :)

Happy 1 week birthday, Faith!

Happy 1 week birthday to my sweet baby girl! We had a good day today. For her "birthday" Faith got some brand new sleepers and a Winnie the Poo movie that we're watching right now (I forgot how much I loved Winnie the Poo... it's too cute). Faith is doing well but has a bit of jaundice, so I am trying to push as much breastmilk through her as I can and sitting with her by the window when it's sunny out. I don't think she is getting enough milk to flush out her system and the window light is just not enough, so Grampy went out and bought a UV lamp tonight so that we can do some phototherapy at home. I hope that we see an improvement in her colour soon. Right now she looks less yellow than usual but her levels are always going up and down and I just hope she starts to pink up. Well, I am going to go snuggle my little girl... thanks for checking in on us :)

6 days old :)

Well what can I say... I am so in love with my baby girl and so glad that she is still with us. Faith turned 6 days old today at 12:26 in the afternoon. She is such an amazing baby. I wish I had time to download some more photos and videos of her but we are just so so busy. Right now Grammy is laying down with Faith while I take a few minutes to myself and update you. And I am already anxious to get back to her... I don't want to miss a thing! I promise I will upload some videos and photos when I get the chance. When I'm not feeding Faith I'm either expressing milk for the next feeding or changing her diaper or taking pictures or sleeping beside her. So if I don't answer your calls or emails, I hope you understand! This is the longest I've been on the computer since Faith was born. Grammy and Grampy have been staying home this week to help out and I don't know what I would do without them. Our nurse practitioner -who we love to no end -comes over once a day to change Faith's dressing. I don't know what we would do without her either! My mom and I were thinking that maybe I shouldn't have said that I didn't need anything when I had my prayer shower. We only had a few sleepers for her and thankfully Jennifer and her sister dropped off a few extra outfits. We really needed them! Especially since I bought her preemie-sized clothes, thinking she would be smaller than average. She is already fitting into 0-3 month clothes because she is so long. We even dress her in 3-6 month sleepers sometimes and they aren't very baggy on her either. She is one big baby :) Anyway, I have been away from my baby for too long and starting to get anxious to see her. I'll post another update soon. Thanks for checking in!

5 1/2 days old

This is mommy quickly updating you before I go to bed. I know I haven't posted very often but I've had my hands full 24/7 caring for this little miracle (and loving every minute of it). I just wanted to let you know that she is still with us and doing well! She is so amazing. Hopefully tomorrow I can upload a few photos and maybe a video. This morning she sat right up on her own and we caught it on video... no kidding! She just keeps surprising us. Anyways I need to go snuggle with my little girl and let Grammy go to bed. Night night :)

4 days old

My little rosebud... she turned 4 days old today! Faith is slightly jaundice but is doing amazingly well. She breathes well on her own, she cries when she's hungry or needs changing, she talks and cooes (she has the sweetest voice) and she smiles. She is so beautiful... she is such a miracle :)

Faith is almost 24 hours old

Hello! Its Jennifer again with a beautfiul update for you on behalf of a glowing mother. Faith will be 24 hours old in just under a hour and I am just praise God for the time Myah and precious Faith are having together.

I got a chance to finally hold Myah's little miracle and I couldn't believe how beautiful she was. Ten tiny fingers and toes and the cutest little nose. I just melted in the few seconds I got to hold her. Myah is just so proud of her little one.

The greastest news of all is that Faith Hope Walker will be going home tomorrow if all goes well with mommy and baby. Wouldn't that be a true answer to prayer! I will post again if any other news comes up!

Happy Birthday Faith!

Hello everyone! This is Jennifer updating you on behalf of Myah. This morning Myah went in for her c-section with her mom by her side. The dr's and nurses were just amazing! At just after 12:00 Myah went into surgery and at 12:23 (approx) Faith Hope Walker was born crying! Faith weighs 6lbs 9oz and don't know the length but either way she is here and just beautiful.

Faith is such a beautiful little miracle! When I left at 1:30pm Myah was having a few issues with blood pressure but Faith was suggled close to her the whole time. I will update more once I learn more.

Happy Birthday Faith! You are very loved...

Jennifer

(Later in the evening)

Just talked to Myah and her and little Faith are doing well. Myah is starting to slowly feel human again after the anestetic (sp??) wore off. Faith is doing really well. She is a beautiful pink color and she is eatting a little bit of colostrum that Myah is trying to pump! What a little miracle Myah has. I am truly blessed to have had a chance to be one of the first people to meet this little princess who has touched my heart.

2 days until the delivery

Well, I actually got outside for a walk today, if you can believe it. I bundled myself up and took the dog for a walk to the store and back. Or should I say she took me for a walk? I had a pretty strong motivation though... cravings. I have been craving different things everyday. Yesterday it was a McDonald's cheese burger and their non-fizzy orange pop (which my mom kindly went out and got for me). Last night and today it has been ice cream bars. You know, the ones with the chocolate coating and white ice cream on the inside. So I went to the store and got a few of those ice cream bars. It was sooo worth the walk...

It's hard to believe that Faith will be born in 2 days! As a first-time mom, I can't even imagine what it's going to be like to hold my child for the first time. I'm trying to decide what clothes to dress her in when she's born. I'm thinking maybe her pink footie sleeper thing. It's nothing fancy but it looks like it would be cozy. I know Jennifer has a little outfit for her too, which I haven't seen yet. Anyways, I will post a message before I leave for the hospital on Thursday morning and then I think Jennifer will be posting updates after that. Thanks for checking in on us!

41 weeks

Sucking her thumb!

Today was our last profile/prenatal appointment until the delivery. We're scheduled to have a c-section Thursday at 11:30. In less than a week from now, she'll be in her mommy's arms.

40 weeks, 5 days

This was taken today at UC Baby. When I went there to have a heartbeat bear made, the ladies offered to take a few photos for free. This one is my favourite. And here is the teddy bear... Yes, that is Faith's heartbeat.

40 weeks, 4 days

Ok, so the full moon didn't have as strong of an effect as I thought it would. Faith was a little more rambunctious than usual but that's about it. My water stayed intact and no contractions yet. Last night a woman named Shannon offered to buy me a UC Baby "heartbeat bear." Apparently they record your baby's heartbeat and stick it in a teddy bear, and when you squeeze the teddy it plays back the heartbeat. I thought it would be an awesome keepsake so I accepted her offer. We have an appointment for 11:30 tomorrow to have one made. So hopefully I won't go into labour before then. I get really nervous driving on bumpy, icy roads so I hope the drive goes smoothly. Not sure what I'll be doing today... It's a little after noon and I feel like going back to bed.

40 weeks, 2 days

If I seem really cranky or short-tempered lately, it's probably a combination of hormones and the fact that I'm really tired... and I have been getting so many messages a day from people who feel the need to offer their advice. All the advice and cliches have been wearing me out lately. I know you all mean so well but I think I've had all the advice I can take at this point. Right now I just need rest... so if you write and I don't respond, please don't take offense! Ok, once again I need to get some sleep. Thanks for checking in on us. Tomorrow is the full moon. I'm going to try my best to hold in all this water, but I'm thinking tomorrow might be the day... we'll see.

Due today

Well, today's our due date (and Grandpa's birthday). No signs of active labour yet but we're getting closer. Since Saturday I've been really sleepy and having menstrual-like cramps. The cramps have been getting more frequent and yesterday I started to have some tummy upset too (which is actually more than tummy upset but I'll spare you the details). I guess my body is naturally clearing itself out. I'm not sure how much longer it will be before active labour kicks in, but I wouldn't be surprised if it started sometime this weekend. There is a full moon on Monday, so we'll see what happens then. We have a check-up and another profile scheduled for today and I really don't feel up to leaving the house at all, but I guess I have no choice. It will be nice to see her on the ultrasound monitor again, though. That never ceases to amaze me. Anyway, time to get more sleep... I'll update again soon.

(Later that day...)

Our profile went well. My fluid levels are up to 28.5 but that's not too bad. We scored 6/10 today but the points we lost don't really indicate anything. We lost 2 points because my fluid levels are high and 2 points because Faith's heart rate didn't fluctuate 15 bpm above the resting heart rate in a certain amount of time. But everything looks good. She is swallowing (and peeing) and she's practicing her breathing movements (her chest moves up and down as if she was breathing air). And she has good tone, which means she's moving normally I guess. I did get another picture today. It's not as clear as the one she took last week but you can see her lips, nose, and chin from the side. She sure has a pretty set of lips, doesn't she?



Anyway, I am exhausted so I think I'm going to lay down for a while... thanks for checking up on us!

Due in 3 days

Our due date is this Friday, the 6th of February. I'm very grateful that I've been able to carry Faith for as long as I have and I'm grateful for each day that she is still in my belly. I won't lie... I love being pregnant. I love the feeling of having her in my belly and I love feeling all her kicks and jumps and hiccupps. I love my big round belly, I love my stretchmarks... I don't know what you other women are complaining about. The discomforts are a small price to pay. If I could keep Faith in my belly for another 9 months I would. I cherish every moment --even when she kicks me in the ribs! In fact, I enjoy that too. This week my number one priority is to relax. I am more sleepy than usual and I need that extra rest, so I might not post very often until I go into labour. If I don't post for a while, it just means that I'm still pregnant and I'm taking it easy.

Feeling anxious

I am starting to have some anxiety about the birth. I have been so cranky and impatient with people, and I've been feeling a bit sick to my stomach. I am making an effort to relax, but I feel like any moment now my water could break or labour will begin and I will have to jet to the hospital. I doubt I would be this anxious if I was having a natural birth because there would be no rush. I was definitely more calm about things before I opted for the c-section. I am still looking to God for an answer to that one...

I can't look at this without laughing...

A bunny I drew at age 4 (mom loves this)

Profile #2

Faith making a fist... she was opening and closing her hand. It was really amazing to watch.

Cutie pie face

Faithy scored 8/10 today. The two points she missed was because her heart didn't fluctuate 15 bpm above the resting heartbeat within a certain amount of time. But it happens... especially if they are asleep.

My fluid levels were a 27 today, which is above the normal range of 5-20. So I have a excess of amniotic fluid. It was normal last week but I guess lately I have developed gestational diabetes. But they contacted the doctor who was on call and she wasn't concerned. She said it might make me a little more uncomfortable but it's not dangerous. The nurse told me I should cover my bed with something, cause if my water breaks while I'm in bed all that fluid would probably ruin the mattress.

She could come any day now and I feel so unprepared. I really hope the little girl waits until her due date at least, but you never know!

Spying is creepy...

I just wanted to say that I have been very careful not to name any names when talking about my experiences with the hospitals or health care providers. I have been brutally honest about the experiences I have gone through with this pregnancy, but I have never slandered anyone's name or said anything that crossed the line. This is an online diary that I started so that I could share our story and keep friends and family posted on how my pregnancy is going. I would like to keep it open to the public so that I can reach people who might be going through the same thing. But when I hear about people snooping around my blog to see if I wrote anything "bad" about them (or their clients)... it kind of creeps me out. I mean this is my personal diary you're reading. If you're just coming to this site to spy on me, please find something better to do.

To all of you who view this blog for normal reasons... you can ignore that! :)

Change of plans

Until now I haven't had the option of a c-section delivery, which I have been asking about since October. I was told several times that I wouldn't get the option of an emergency c-section if my baby went into distress during labour, but I could never understand why they offered it to every other woman but me. It's pretty discriminatory, really. But finally my doctor decided that she would be willing to compromise and offer me an elective c-section instead. That way there is no rush to get the baby out and less risk to me.

The reason I wanted the option of a c-section (at least to have the choice) is because of the nature of Faith's anomaly, which affects the top of her head. Since she doesn't have scalp or bone covering her brain, I was worried that a vaginal birth would be too much for her. She might not be able to handle the force of the contractions and being pushed through the birth canal head-first. I know a vaginal delivery is the safest thing for me and I know it would be a more natural birth experience, but a c-section would give Faith the best chance of being born alive and would save her from the "hardships" of natural childbirth (which will hopefully improve her quality of life and increase her length of life). Make sense?

So the plan is, I will be scheduled to come in for a c-section sometime in mid February, and if I go into labour before then, I am supposed to admit myself to the hospital right away and the doctor on call will give me a c-section then. And if for some reason I change my mind and decide to go ahead with a natural birth, I'm sure no one would have a problem with that.

By the way, Jennifer thank you so much for helping me to clean my room today!!!!! It's not easy cleaning when you're 39 weeks pregnant ;)

Week 39

Our due date is next Friday, can you believe it? My belly is starting to look different because Faith's been dropping in preparation for the big day. She was way up high before but she's been gradually sinking lower and lower, and I'm finally getting that nice round belly (it was a bit square-shaped before). Amazingly, my belly button is still an innie!

I was really expecting to be an emotional wreck by now but I seem to be doing ok. I'm feeling pretty calm about everything, and even a little excited. A lot of people have asked me if there is anything they can do, and I really appreciate that. Other than your prayers, I can't think of anything... unless you want to help me clean my room? Haha ;)

38 weeks already

It's hard to believe that our due date is just two weeks away. These last weeks of pregnancy seem to go by so quickly. A week feels more like two days at this point. My ob-gyn doesn't think I'll go into labour on my own, though. She is expecting that I'll go overdue and need to be induced sometime after 42 weeks. She's actually away on vacation the week that Faith is due! It's very possible that I could go into labour when she is away, or I could go any day now. It wouldn't be the first time a baby was born two weeks early!

I am supposed to meet with my nurse practitioner at some point this weekend for coffee and a little one-on-one prenatal lesson. She's worried that I might not recognize when I'm in labour or that I'll be scared going into Labour and Delivery if I don't know what to expect. This is my first baby and I haven't gone to any prenatal classes at the hospital, so I really don't know what to expect.

Well I'm definitely not 100% prepared but I'm feeling pretty good, all things considered. I like not knowing the exact time when I'll go into the hospital. It could be today, tomorrow, next week, or next month... but I would probably be a wreck if I knew the exact day. I am happy that those things aren't in my control. I have mixed feelings about the birth, but I am mostly excited because no matter what happens, it's Faith's birthday and I will finally get to meet her face-to-face and hold her in my arms.

Our profile went well!

Yesterday we went into the hospital for a biophysical profile so they could check my fluid levels and see how Faith is positioned. I brought my camcorder just in case the nurse would allow me to videotape the session. She was wonderful! She not only allowed me to videotape but spent some extra time playing around with the ultrasound machine so that we could get a good look at Faith. She focused on her face, and it was so cute to see her little nose and lips and chin. She gave me a couple of 3D photos, one of the side of her face and the other of her two hands together. She also let me have a piece of print-out from the fetal heart monitor.

Oh... and you know how I thought Faith had the hiccups? The hiccups have been confirmed! She started hiccuping during the heart monitoring part of it and her hiccups threw the monitor off a little bit. It was a cute thing to hear, even though it frustrated the nurse. She also kept moving away from the heart monitoring device and the reading kept dissapearing. The nurse usually just hooks it on and leaves it there for 15 minutes, but she ended up having to stand there and reposition it every time Faith would move away. Then Faith started to kick and squirm around. I think between the hiccups and the nurse poking at her, she was starting to get annoyed! The nurse didn't have time to go over the report, but she did say, "The fluid levels are good and the baby looks good." She also told me that Faith is positioned head-down, which is good. So for once we had some good news :)

Hiccups

Usually when Faith moves, it's her legs and her bum that I can feel. I usually feel her kicking above my belly button or, if I'm lying down, underneath my ribs (I'm assuming she's head-down). Many a time have I felt her little foot sticking out to one side, just below my ribs. Sometimes though, I can feel movement at the opposite end of her body. It feels like every second or so, her head jumps a little. And it's a rhythmic movement that seems involuntary. I have been trying to figure out what this is, and if it's normal. Well I think I finally figured it out. She is having hiccups. Haha... Well the good news about hiccups is that it's a sign that her swallowing and breathing are developing normally. And even though it's a small victory, it makes me happy :) It gives me a little extra hope that Faith will surpass her life expectancy. Wouldn't it be great if I could take her home from the hospital? That would be a miracle.

Almost full-term

Tomorrow I'll be 37 weeks pregnant with Faith. Because her lungs would be fully developed by now, she is considered a full-term baby. We have 3 weeks until our due date, but she may decide to come a little earlier or later than February 6th. Next week the doctor will be checking my cervix to see if it has softened or if I'm dilated at all, just so that we have an idea of how soon to expect her. My ob-gyn has doubts that I'll go into labour on my own. She is expecting that I'll need to be induced. If I am induced, she said that we could wait as long as Feb. 23rd to start my induction. So she is not expecting Faith to come out until late February. I don't know... I have a feeling she'll be popping out in a few weeks!

Now that I finished writing up my birth plan, I am feeling a little less anxious and a little more excited. And I actually feel like my wishes for the birth will be respected now. Not because the doctors changed their minds about anything, but because I have legal representation now :) Right to Life NB has hooked me up with a great lawyer who will represent me free of charge. That's all I will say about that. But needless to say, I am feeling much more at ease.

It is also comforting to know that it won't be the neonatologist looking after Faith once she is born. It will be the attending GP (it usually depends who is on-call at the time). My nurse practitioner has offered to attend the birth and will relay any info to my GP, who will step in if any decisions need to be made about Faith's care. They both have been very supportive of my wishes for this birth, so I'm not too worried. They don't treat Faith like a "fetus," they treat her like their second patient. As for the rest of the attending hospital staff, I have included a little warning in my birth plan that states:

Although Faith is expected to pass on within hours or days of birth, I expect her to receive all the care that a baby would normally receive. Understand that failure or refusal to deliver care to my child because of her infirmity will be considered discrimination, negligence, and ethical incompetence.

After I had that meeting with the ob-gyn and the neonatologist, I had some concerns about the kind of care that Faith and I would receive. That is why I decided to add that warning... the rest of the birth plan is much less stern, though!

The 'big' meeting

So we had our meeting with the doctors today. When I first got to the Labour and Delivery floor, I said to the nurses, "Hi... I'm here to see Dr so and so, Dr. so and so, and Dr. so and so. Are they here?" One of the nurses said, "That's a lot of doctors, but no, they aren't here. What is your name?" And as soon as they heard my name, they knew who I was. When my GP showed up, they whispered to her behind the nursing station, something along the lines of "Is she in labour?" My doctor said that they knew my case and were a little nervous. She said it was just fear of the unknown. I didn't feel very good about that. What are they afraid of? My baby may have a defect but she is still beautiful.

Well, the meeting with the three doctors went pretty much as I expected. I wasn't given the option of a c-section unless Faith is positioned sideways or if there is "maternal indication" that they should (if my labour doesn't progress or if something goes wrong that puts me at risk). My OB said that if Faith is breached, I can still deliver vaginally because her head will not get stuck. She was nice today, though. She offered me a private room for after the delivery and said that it would be free of charge, which I'm very thankful for. It would be so awful to have to room with another mom and her healthy baby... I'm glad she understands that.

The neonatologist was... not so nice. He seemed very rigid in his beliefs that babies with anencephaly cannot see, hear, think, or feel. He kept saying "The definition of anencephaly IS...blablabla." He said that they never recuscitate babies with anencephaly. I asked him, "What do you mean by 'resuscitate'?" He said, "We won't take any measures to prolong the baby's life. The only thing we do is swaddle the baby in a blanket and give the baby to the mother." He said that they would not even suction out her airway if needed. I said "You wouldn't even suction her? Why not?" and he replied very sternly, "Why WOULD we?" I said, "Umm... because I would want you to?" But my OB spoke up and said that they would at least suction the mucous out of her nose and mouth. Well I should hope so... it's the least they could do. My GP asked the neonatologist what kind of care they would do for Faith's head. He said, "We would cover her head with the blanket." He explained that it would be like the way an Arab woman covers her head. I said, "Umm... I was kind of thinking more like a dressing?" Again my OB spoke up and said that yes, they would cover the opening of her head with a dressing, such as a gauze pad. I asked about what kind of comfort measures would be offered, such as painkillers or something to calm seizures if she has any. The neonatalogist said, "Babies with anencephaly do not have seisures." (I'm sure Lily's parents would have something to say about that...) I said "But... they do, though." He said, "No. They have 'movements,' not seizures. They cannot have seizures because the cerebral cortex is absent." He went on to explain the anatomy of the brain again. I told him, "But the brain of an anencephalic baby is not the same as if you took a normal human brain and removed the cerebrum. It's a malformed brain, but it is not the same thing as if you removed the cerebrum from a normal brain. " He did not seem to agree with me. My GP asked about painkillers to comfort her and he said, "It all comes down to futility. It is FUTILE to give a baby pain medication if the baby cannot benefit from it." And he went on again about how she only had a brain stem and could not feel (sigh...). I said to him, "Look... I know this is the current 'body of knowledge' and this is what's in your text books, but I do not believe it. I just don't buy it."

So yeah... the meeting went pretty much like I expected! I knew the neonatologist would probably try to impress me with his textbook knowledge and I knew he would probably offer Faith nothing, and I knew I probably wouldn't get the option of a c-section. Why is it that in almost every other part of Canada and in almost every other part the world, babies with anencephaly receive better care than here??