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...
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!
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! :)
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 ;)
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 ;)
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.
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 :)
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.
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 myGP, 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!
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??
I finally have an appointment! The meeting with the obstetrician and neonatologist has been set for this Friday at the hospital where I'll be delivering Faith. I'm relieved that they finally set an appointment but nervous about how the meeting will go. They asked me to meet them on the Labour and Delivery floor, which is good because I can take a little tour of the place while I'm there. I probably haven't been on that floor since my little brother was born 18 years ago.
The muscles of my upper abdomen seem to be stretching and tearing as Faith begins to drop, which has been giving me pain. It feels all hot and stingy. Between that and my back, I've been spending a lot of time laying down to ease the pain. Laying down and letting out deep breaths seems to work much better than Tylenol. I hate complaining about physical pain, but it hurts too.
One of the things I've been doing with my time is listening to an audio Bible with Faith (one headphone on my belly, the other next to my ear). Since Sunday we've gone from Genesis 1 to Exodus 21. To anyone who thinks the Bible is boring, wow--are you sure we're talking about the same book? It's like God Himself telling you the greatest story ever told, and you are apart of it. It doesn't get any better than that! Until now I've only read the Bible in fragments, but it's like the pieces of the puzzle are finally coming together and I'm starting to see the big picture.
I've also been spending some time reading emails and messages from people I've never met who tell me they are praying for me and Faith. I am really blown away... God bless you all! Your kind words encourage me and your prayers lift me up.
One month from today will be my Grandpa's birthday and very possibly Faith's birthday!
I called my doctor's office this morning to see if the meeting with the obstetrician and neonatologist was scheduled yet and the receptionist had no clue what I was talking about. I have been waiting for these doctors to set an appointment for about six weeks now. I am starting to get a little anxious... are they going to leave this until the day before I go into labour? I was kind of hoping we would have a birth plan in place by now. Faith is starting to drop and we're coming very close to our due date. I am due in one month and I feel totally unprepared!
I refused to see a specialist for this pregnancy because I guess I just didn't see the point. My obstetrician's receptionist called before my initial consultation and tried to convince me to see some specialist and I told her "No, thank you." She asked me, "Why don't you want to see the specialist?" I answered, "Why would I see a specialist?" She said that the specialist could do an amniocentesis and "other tests" and would provide special counseling. I said "No, I don't want an amniocentesis and I don't want counseling." The receptionist had nothing else to pitch and ultimately failed in her attempts to pawn me off (which was actually the doctor trying to pawn me off). When I spoke to the obstetrician afterwards, she did admit that the specialist would have probably pushed me for termination. Whoa, big surprise there!
Well anyway... the consultation with the obstetrician didn't go so well. She was just as insensitive and unsupportive as any other doctor I had seen. I decided to go to a Christian family doctor for my prenatal care instead. Just the basic care: she takes my weight, checks my urine, measures my belly, checks the baby's heart beat, takes my Bp, and asks me how I'm feeling. No fancy shmancy care. My obstetrician will still be there for the delivery, but she hasn't really been involved other than that.
I am really amazed when I hear of someone in a similar situation who has all these specialists on the case. What are they even doing? My doctors have always just told me there was nothing much they could or would do. Well that's fine, at least they admit it. I am not counting on them anyway. I have God with me and He can do what they can't!
Yesterday we had our prayer shower at Jennifer's mom's house. It was the first prayer shower for all of us so I'm sure no one knew quite what to expect, but it went surprisingly well. I was really thankful for all the preparation that went into putting the shower together, including everyone who brought food. The cake was really beautiful. It was a pound cake with "We walk by Faith, not by sight" written in icing letters. Thanks for putting all this together, Jennifer!
I was hoping I wouldn't cry in front of everyone but tears were inevitable, especially during prayer time and when Jennifer read her poem, "Dear Baby." But when the tissue box got passed around the room, I realized that we were all crying together and it was ok.
Here is the poem Jennifer wrote from the perspective of her 10-month-old son, Alexander. Alexander was there when I had my first ultrasound on September 12th.
Dear baby Faith,
Hello, little baby. You don’t know me yet but I sure know you; I have seen your little fingers and your little toes. I wanted to tell you that I love you no matter where you are. Mommy told me you might not be with us for very long but I needed to Tell you that you are much loved.
I myself am not very big but am very excited to have a new friend really soon. I may not be able to talk right now or really understand, But mommy told it starts with folded hands. She also told me about this man who lived a long time ago; He used to heal sick people and loved everyone the same.
I hope one day I will meet you and touch your little hand; I will protect you when things get bad. No matter what happens or where you go, You have a little friend who is waiting to say hello.
If I don’t get to meet you, mommy told me one day, We will see each where there is no sadness or pain. We will get to hold hands with that very Special man.
Oh yeah –before for I forget, if you get to that Place before I do, will you Give my brother and sister a hug for me And tell them I love them!
Love a very special friend, Alexander James
I want to thank everyone for the letters to Faith and for the thoughtful gifts. And just for being there... because I know it's not easy coming to a baby shower in these circumstances but it really shows that you care. I know not everyone could come who would have liked to but many of you have been praying for us from a distance, and I really appreciate all your prayers.
I am little relieved that the Christmas season is finally over (anyone carrying grief understands), but I know this also means I'm getting very close to my due date. Five weeks left... It scares me that it's already 2009, even if it is just the first day. Can't I just go back to September 11 and stay there?? That one day that I was finally at peace with everything going on in my life and looking forward to the day my child would be born? I want to go back there so badly... I didn't know how good my life was back then, before the word "anencephaly" entered my vocabulary. I would complain over the smallest things. Now when I see a woman with a healthy child complaining over something small, I feel like slapping her for being so ungrateful. Whenever I see a pregnant woman complaining instead of being happy like she should, I feel like saying, "I feel so sorry for you. My baby is terminally ill, you wanna trade places?" Sigh... but then again, if they were happy I'd probably resent them for that too.
The only people I seem to really relate to nowadays are other moms of anen babies. I can't even relate to moms who have lost children in miscarriage. I know the loss is the same, but the journey is so different. It's not a sudden, unexpected loss. With anencephaly, you're given five months notice. Five months to think about it and pray that God will do something --anything. Can you imagine? It's the worst feeling in the world counting down the weeks before you have to say goodbye to your baby. I can't even describe how that feels. When I was a little girl, I had this reoccuring dream that I was going to die and my mother was preparing me for my journey to Heaven. I didn't want to leave her but she seemed so accepting of it. I was crying but she wasn't. That horrible feeling I felt in those dreams is so much like the way I feel when I'm faced with Faith's passing. I try not to think about it.
I'm sorry this has been so depressing... I really hope I can cheer up soon and not spend the next five weeks wallowing in misery. I know Faith's birth will be a peaceful and joyful day. It just has to be.
My name is Myah and this is the story of my baby girl and our journey with anencephaly.
At my 19-week ultrasound, I was told that something was wrong with my baby's head. The doctor said that my baby had no brain. I'm sure most people wouldn't have even considered her to be alive. I was told that I could safely continue my pregnancy and allow her to die naturally, or I could induce labour and terminate the pregnancy. I chose to carry my baby to term for one simple reason: love. In my eyes there was no decision to be made. I had nothing but love and high hopes for her, and I named her Faith Hope. I cherished every moment of the pregnancy, and for five months we hoped and prayed. Then to everyone's surprise, we were blessed with 3 months and 4 days with Faith before she went to Heaven. She was the sweetest little girl... so beautiful and so full of life. I feel so blessed to be her mother.
I created this blog 10 weeks before my daughter was born. The posts here are very personal, emotional, brutally honest, and at times ungraceful. It's not easy for me to share so much of our life with the world. But it is my hope that by sharing our story, God will be glorified for all He has done for us. I also hope that this blog will reach other moms out there who are facing the same prenatal diagnosis that I did.
Our doctors firmly believed that Faith would never achieve consciousness and would likely not survive for more than a few seconds or minutes after birth. They didn't understand how she was thriving for all those weeks: how she was smiling, cooing, crying, drinking milk, breathing on her own, resisting infection, and responding to her surroundings. It is possible --all things are possible with God.