Faith in her big girl PJ's
Monday, March 30, 2009
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!
Monday, March 23, 2009
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!
Saturday, March 21, 2009
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!
Friday, March 20, 2009
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!
Tuesday, March 17, 2009
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 min 40 sec (cutest sound ever)
Monday, March 16, 2009
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.
Thursday, March 12, 2009
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" :)
Wednesday, March 11, 2009
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!
Saturday, March 7, 2009
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...
Thursday, March 5, 2009
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!
Wednesday, March 4, 2009
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!
Tuesday, March 3, 2009
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.
Monday, March 2, 2009
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.
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 :)
Sunday, March 1, 2009
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 :)
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.