Our Christmas wreath

Complete with little pink pom-pom hats

Happy 10-month birthday, sweetie <3

*Kissies*

Mommy's feisty little girl (2 days old)

Happy 9-month birthday, Faithy!

I sure do miss that cute little face! <3

Me and my "mini me"

I miss my baby so much... It's hard to believe that it's been less than six months since the Lord called Faithy home. It seems like it's been so, so long since I last held her. It is hard, but I am so thankful for the 53 weeks that she spent here on earth. That's right, 53 weeks: 40 weeks in my belly and 13 in my arms. One year and seven days. What a blessing! It went by so fast --too fast. God knows I would do it all over again if I could.

Some people tell me that I'm strong, but if they knew the truth, they would know that I have all the strength of a baby bird with one broken wing. I am not strong, but my God is strong. His love is strong. He gives me the peace and joy to carry on. And He comforts me with these words:

"Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going."

Thomas said to him, "Lord, we don't know where you are going, so how can we know the way?"

Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me. If you really knew me, you would know my Father as well. From now on, you do know him and have seen him."

Happy 8-month birthday, Faithy...

Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever. (Psalm 23:6)


Faith and her soukie

Happy 7-month birthday

Seven months ago at 12:26pm my little sweetie was born!
Happy 7-month birthday, Faithy :) If I could do it all over again,
I would.

Another beautiful portrait

Pencil sketch by Bethany Kerr (4 days old)

Untitled poem

Six months and fourteen days ago, you left your mommy's womb.

Though you were 13 days past-due, mommy felt it was too soon!

But mommy had no choice, so she prayed that you would stay.

God gave mommy faith and hope and drove her fears away.

The doctors said there was no hope and nothing they could do.

All I wanted was just one day that I could spend with you.

On the nineteenth day of February, you cried your first cry.

You smiled your first smile... you sighed your first sigh.

You were the cutest, sweetest baby that anyone had seen
And your mommy was the happiest that she had ever been!

They said it was impossible for you to live and thrive --

For weeks and weeks they wondered how you were still alive.

With God all things are possible; mommy knew it all along.

Science boasted knowledge but God proved science wrong.

I know that you're in Heaven now. There is no better place.

Someday I'll be there with you, by God's amazing grace.

Sweetest little voice...

Lunchtime feeding (3 days old)

Happy 6-month birthday, sweetie sweets!

Six months ago today my baby girl was born. Three months ago we got to celebrate Faith's 3-month birthday with her. God blessed us with so much time with her and yet it's never enough. I miss my favourite girl everyday. Wishing my sweetie a happy 6-month birthday with Jesus :o)

Sleeping comfortably on Mommy (1 day old)

My dream come true

February 8, 2009

"The carseat that I hope I can take Faith home in."

February 21, 2009

Bringing her home.

Waking up from a nap

6 days old

1-day-old Faith

I'm so rumbly in my tumbly, time for something sweet...

Carrying to term

If your unborn baby has been diagnosed with anencephaly and you are in the process of deciding whether or not to carry your baby to term, you have come to the right place (and I have no doubt that God has led you here). Neither road is easy when you are told that your baby is not going to live, but (trust me...) carrying to term is the only one road worth taking. You have nothing to lose by seeing your baby's life through, and believe me, there is so much to gain that you can't even imagine at this point. You will never regret carrying your baby to term, no matter how much time you are blessed with. Even if it is only for a minute (or less than that), it will be worth it. The time you spend with your baby will prove to be priceless --time that you wouldn't trade for anything.

For support on carrying to term, please follow this link to the "anencephaly blessings from above" online support group:

http://health.groups.yahoo.com/group/anencephalyblessingsfromabove/

Happy 5-month birthday, Faithy!

It's hard to believe that only two months ago we were celebrating Faith's 3-month birthday with her. At that time she was learning to suck on a bottle and seemed to be doing so well. We had no idea that we would lose her four days later. Today Faith would have turned five months old. I'm missing her all the time... wish I could see what she's doing right now. Happy 5-month birthday, sweetie xox

Missing my girl...

1 day old

In Loving Memory

A slide-show tribute

It's the 19th again

I just realized that we would have been celebrating Faith's 4-month birthday today. We probably would have watched our Winnie the Poo movie (I would have sang all the songs of course). I was actually thinking about watching that movie today, hmm maybe that's why I thought of it.

Pencil sketch

I got a gift today... a beautiful pencil sketch of Faith that looks exactly like her picture, only without the tube feed and with angel wings :) I could cry looking at it, it is just so beautiful. Looks like her in every way. A woman named Bethany made this for me and sent it all the way from Alabama. I can't believe it made it all that way without a scratch! I'll take a picture of it tomorrow so you can see :)

Prayers for mommies and babies

I've created a new blog where I will be posting my friends' prayer requests and praise reports. This new blog is devoted entirely to mommies and babies who need prayer, especially the moms who are carrying babies with anencephaly to term. Please visit http://www.prayers-for-mommies-and-babies.blogspot.com/ to find out how you can pray for these women and their families.

I thought I'd post a few more home videos of Faith today... so comforting to look back on those memories.


First kiss from mommy (just born)


Grampa taking a video (evening of her birthday)


She used to pull her own arm out of her sleeve for me. Grammy and I were trying to catch it on video. (3 weeks, 2 days old)

Four days old... big smile :)

So, I think this might be "the" photo. I have been trying to decide on a photo to include in my thank-you cards, and I think this may be it :) I still have some photos to sort through, but I really like this one. It was taken when she was 4 days old. That was a really good day! Faith was just full of big smiles that day... from ear to ear. Looking back, I would say that was one of the happiest days of my life.

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...