Tuesday, December 30, 2008

Sigh...

Okay this is not going to be the most cheerful blog I ever posted... I am really sickened by the world right now and I need a place to rant. I just finished watching a "Just for Laughs" gag where they sealed a baby doll and a recording of a baby crying in a cardboard box, and thought it would be funny to tape peoples' reactions as a man comes to pick up the parcel, shakes it, and decides to walk away from the crying box. You know what? None of the peoples' reactions were looks of horror or concern for the baby that might be inside. There was laughter playing in the background because apparently mistreating a baby is funny. Umm... What is WRONG with people??? Let me tell you, I would have ripped that parcel open before the actor even got to it if they had played that "joke" on me :(

Monday, December 29, 2008

Planning for the birth

So, I'm almost 8 months pregnant now and still on the fence about whether to have a c-section or a vaginal birth. I think a vaginal birth would be hard on Faith, judging by the size of her cranial opening. In the front, her skull appears to end a litte bit above her eyelids, at her brow (which is less severe than some cases I've seen) but I can't really tell how it is in the back. In the photos you can also see how her brain protrudes outside of her skull a little bit. If she were to push through the birth canal head-first, it would put pressure directly on her brain. Apparently there are no nerve endings in the brain, but I still think it would cause her more suffering than if I were to have a c-section. I mean it's not easy squeezing through a birth canal for anyone, and being pushed through without a skull to protect your head just doesn't seem fair. I hear mothers talking about how "battered up" their anencephalic babies looked when delivered vaginally. Then again, it would be ideal if Faith was breached and came out bum-first. Even feet-first would not be so bad (she's not expected to be very big). That way I could deliver naturally without putting a lot of pressure on the top of her head.

After weighing the pros and cons, I realize that a vaginal birth is the best thing for me, while a c-section is probably the best thing for Faith. Although I would miss out on the whole natural childbirth experience, it would be so worth it if it meant minimizing Faith's suffering. It's not that I want to prolong her stay with us by having a c-section... not at all. In fact, part of me has hoped that she would be stillborn so that I wouldn't have to watch her suffer. But seeing her stillborn, all purple and bruised up... I don't know if I could handle seeing her like that either. And I do want to have some time with her before she goes, enough time for me to feel her little hand wrap around my finger and enough time to look her in the eyes and tell her that I love her and sing her lullabies. No matter how long she stays with us, I know I'll be holding and kissing her for hours.

I have also been thinking about what kind of care will be given to Faith once she is born. Theoretically, substituting Faith's oxygen could prolong her life for months or years. But she would never "get better" or even grow up. It would probably just prolong her suffering, and only God knows how much I cry over not wanting her to suffer. So unless God performs a miracle and changes everything, only food and comfort measures will be given to her. I am hoping to breastfeed (my colostrum has already come in, so I think I will be able to) but if I can't, I will request a substitute for her. I am also wondering about pain relief, but I haven't decided about whether or not I want to medicate her. No matter what I do to try to help her, I know I will have very little control on that day. That's not going to be easy for me...

Obviously I'm debating a lot of things in my mind right now! I'm meeting with a GP, an OB GYN, and the head pediatrician of the NIC unit soon, to discuss everything and put some kind of a plan in place. I am a little nervous about what kind of opposition I will get for requesting the option of a c-section (actually, I was already turned down before), but hopefully they will see Faith as their "second patient" and will consider her quality of life too.

Friday, December 26, 2008

I Will Carry You

These are the lyrics to the song "I Will Carry You", written by Angie and Todd Smith for their baby girl, Audrey Caroline.

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says...

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who's chosen Me
To carry you


http://www.audreycaroline.blogspot.com/

Monday, December 22, 2008

Faith's little red angel



This little red angel was knit epecially for Faith. It was a gift from someone who loves her very very much.
*hug*

Sunday, December 21, 2008

Faith's blanky

Today I received a wonderful surprise gift from my grandmother and five aunts (my mom's five sisters). They worked together to knit a beautiful baby blanket for Faith. The blanket is pink with ruffled edges and an Angel pattern. Each panel of the blanket was knit seperately and with great care. Apparently my grandmother knit one of the panels thirty times over before she felt it was good enough to use. It is absolutely perfect... I cannot believe the work they put into making such a thoughtful gift. They also wrote a poem, and part of it goes like this:

"As we gathered together to make this blanket of Angels,
each stitch was knitted with love, compassion, and care,
to send a message to you, to know that we are all there."



Friday, December 19, 2008

Lily Grace

One of the moms I've had the priveledge of meeting through the "anencephaly blessings from above" support group is Jessica Frederick. Her precious Lily Grace was born one week ago today and miraculously spent 5 and a half days with her mommy, daddy, and two big brothers before going to Heaven. Lily amazed everyone, including the doctors and nurses.

"She could see (how much I don't know, as all babies see fuzzy) and she could definitely hear. Her responses also seemed to be more than reflexes. And, she knew me. She was never more relaxed than when she was in my arms (with anyone else she seemed to whimper and squirm). And I loved and cherished every moment as God gave me the priveledge to hold her. "
- Jessica

If you would like to view Jessica's blog and see pictures of Lily and her family, you can visit http://lilyblessings.blogspot.com/

Please keep Jessica and her family in prayer during this difficult time.

7 weeks to go

I can hardly believe that Faith's birth is just 7 weeks away. Time seems to be passing by much too quickly. I wish I knew how to slow it down. I guess I can either watch in horror as the time goes by or I can cherish these moments.

Some of you must be praying for my back pain to let up because I was able to sit in chair for almost 3 hours today (while catching up with Esther) and I only experienced a little pain. Usually I can't sit for more than a few minutes before the pain is too much. God is good :)

There is something else that I especially want to thank Him for today. God has blessed me throughout this pregnancy but it has been a painful road. This is supposed to be the happiest time in a woman's life. I am supposed to be getting congratulations, not condolences. I am supposed to be getting a nursery ready, not making funeral arrangements. A friend I grew up with was going to make a carrot cake for my baby shower... then all the sudden there was no baby shower. One thing that has really hurt me is seeing other women have their baby showers and knowing that no one would throw one for me.

But I am happy to say that I will be having a shower for Faith after all! I didn't expect anyone to throw me one knowing Faith's life expectancy, but my friends offered to throw one for me in early January. I don't expect to be showered with gifts (there is nothing that we really need) but I am so thankful. My friend Jennifer suggested that we have a "prayer shower" where we would read Scripture and pray and celebrate Faith's coming with friends. I just hope that this will be a happy occasion and not a tearful one.

Wednesday, December 17, 2008

Little kicks

A quiet afternoon. Just relaxing and enjoying Faith's little kicks...

video


Faith and I listening to some music... notice how she gives a big kick when I touch my belly.

video

Tuesday, December 16, 2008

Our journey so far...

My name is Myah Walker. In about 8 weeks from now I will be giving birth to my little girl, Faith Hope. Faith was diagnosed with anencephaly at my 19-week ultrasound on September 12.

When I had my 19-week ultrasound, I remember the look on the radiologist's face (I can't describe that look) and when he asked me if this was my first child, I had a feeling that something was up. He said, "Something is wrong with the baby's head. This doesn't mean that you can't have healthy babies in the future." That is all he would tell me, that there was something wrong with the baby's head. My mother immediately suspected anencephaly, which I had never heard of at the time. Her sister's first baby was diagnosed with having "no brain", so she had a feeling it was the same for me. While my mother and I spent an hour waiting for the diagnosis, I was praying that it was only Down's syndrom and not what my aunt's baby had been diagnosed with.

The doctor told me with tears in her eyes, "What they found is that the baby has no brain." She said that I could choose to continue the pregnancy with no risk to my health, but that my baby would die shortly after birth. Or, I could choose to induce early to terminate the pregnancy.

I was shocked. Just an hour earlier I was watching the ultrasound monitor and I could see her swimming around and sucking her thumb just like a normal baby. She looked perfect to me. I thought, no brain? How is that even possible? I said to the doctor,"Well... she must have some brain," but she just shook her head and said, "No." She assured me that her movements were "only reflexes."

When given the option to either carry her to term or terminate the pregnancy, I immediately told the doctor that I wanted to carry her to term. It was not a decision that I had to think about. For some reason I had to give the doctors my decision over and over again, which was frustrating. One doctor asked, "Can I ask why you want to continue this pregnancy?" I guess some people are baffled by unconditional love.

I found out later (with the help of the internet, sadly) that this condition is a neural-tube defect called "anencephaly." Nothing could have prepared me for the shocking photos that I came accross on the internet as I did an information search. I had no idea that babies with this condition also had an open skull that ended right above the eyes. I was traumatized by the images and the hurtful words used to describe the babies' physical appearance. You can be sure I will never do another internet search on anencephaly for as long as I live.

At 20 weeks, I had some beautiful ultrasound photos taken at a place called "Baby Images." They also confirmed that I was having a girl.


I never really believed that Faith had "no brain" because I had seen her sucking her thumb on the ultrasound monitor and she seemed responsive to my touch. I suspected that she must have some brain, and if she did, I wanted the doctors to be aware of it.

I requested a second ultrasound but was denied several times. I was told that I didn't need one because my first ultrasound showed that everything else was fine. I said I wanted a second opinion but I guess that wasn't a good enough reason (even though it was). Apparently one of the other doctors who I was no longer seeing scheduled an ultrasound for me in advance, so I ended up having a second ultrasound the same week that this other doctor said no. Hehe...

At my next doctor's appointment, I explained everything to my doctor and she was actually very understanding. I told her that I believed the doctors had given me information based on general knowledge of anencephaly (or whetever nonsense they learn from text books) and not on the radiologist's actual findings. I told her that I hadn't even seen the ultrasound reports or any of the radiologist's photos. To my surprise she offered to show me both reports and some of the photos taken by the radiologist that she had archived on her computer.

The first report stated that Faith's brain was anencephalic, with "some residual brain tissue" present. No measurements were taken of her brain, though (which surprised me). On the second report it stated that anencephaly was apparent. Again, no measurements were taken of her brain and no other details were given. I looked at a scan of her brain labeled "supra orbitals," which means above the eyes. It appeared that she had brain tissue even up to her eye level. That's quite a lot of "residual brain tissue" if you ask me.

When I went back to have more 3-D photos taken at Baby Images at 7 months, I could see that a brain was present and protruding out of her skull a little bit. This was clearly visible in many of the photos.



It is apparent to me that Faith does have a brain, despite what the doctors have said. Even though it is generally believed that anencephalic babies are blind, deaf, and cannot feel touch or think... I don't believe that. Not at all. So little is known about the human brain and the only one who really knows what's going on is God. I truly believe that Faith can think and can feel my touch and hear my voice. I can't prove it but I feel like I just know.


I feel very blessed that Faith's anencephaly is not as severe as I was initially told and that the doctors haven't found any other "anomalies". I am not suffering from polyhydramnios (an excess of amniotic fluid), which I am very thankful for as well. So far my pregnancy has been relatively low-risk and I am expected to be able to carry her to term.



I have been experiencing severe back pain that has been getting progressively worse. I can walk around or lie down, but I cannot be in a sitting position for very long before I am in severe pain. But no, I am not looking forward to my pregnancy being over. I cherish the time that I have with Faith still in my belly and I wish I had longer than 8 weeks.

But I'm also looking forward to when I can finally hold her in my arms and give her kissies! xx