"You have hedged me from behind and before, and laid your hand upon
me. Such knowledge is too wonderful for me, I cannot attain it."
Today has been rough. I am sorry to you whom I have not called
privately, but after a couple of explanations I could not bear it
any longer. The sobs on the other end of the phone hurt me like the
sting of my own tears, so for now I can only handle an email.
Brian and I went in for the ultrasound today and received very
disturbing news. It seems as though the baby is showing to have some
problems with her heart. I will be explaining everything here as I
recollect, but please bear in mind that we are stunned and I could
only absorb so much. I am definitely a "glass half full" kinda girl
so I am keeping hope that it will all be worked out. This is not to
say that I am only hearing what I want to, but I have to trust that
the Lord knows what he is doing even if I don't have a clue.
"For you formed my inward parts, you covered me in my mother's womb.
I will praise you for I am fearfully and wonderfully made, Marvelous
are your works and that my soul knows very well. My frame was not
hidden from you, when I was made in secret, and skillfully wrought
in the lowest parts of the earth. Your eyes saw my substance yet
being unformed." Ps. 139 13-16
First of all, there is an issue with her brain. There are areas that
are supposed to be fluid filled, but it appears that there are some
cysts (Choroid Plexus Cysts-CPCs) in there that are pushing the
fluid out. These cysts are not the kind that grow and cause pressure
on her brain, in fact, there is a possibility that they can 'clear-
up' on their own. In sever cases the child will have major
deformities with their hands/arms/legs and feet, looking like they
are all twisted up. Our little girl does NOT have that. The Dr. was
pleased to see that her fingers and toes were as they should be.
There is still cause for concern however, because she has a
large 'hole' in her heart (Tetraology of Fallot-TOF). If these two
issues were independent of each other, it would be a little easier
(as her mom) to deal with. But in this case, because there is the
heart issue, along with the brain issue, the Doctors are concerned
that there could be a chromosomal defect, such as Down's Syndrome or
worse. The 'or worse' is what we do not know.
One way that we could find out if it chromosomal is to have an
amniocentesis. There are a couple of reasons why we are opting NOT
to do this; being: 1.) It's too invasive 2.) It would not change our
love for our baby.
I have a blood disorder, if you will, being Rh-. This means I do not
have a certain protein sheathing my blood cells ( this is not new
information for me, as I've had to take extra precautions during
each pregnancy). But if my blood and the baby's blood crosses, it
could be devastating. An amnio increases that likelihood of it
crossing because a needle would be inserted into my bellybutton and
pierce thru the amniotic sac to collect fluid for testing . Although
the Dr. says it isn't a big concern, I do not want to take that
chance. Also, doing an amnio in general carries a chance of inducing
miscarriage or preterm labor (depending on gestational age) which is
also devastating. But more than anything I believe that she is being
skillfully wrought and that I need to trust that Jesus' hands are
upon her. Knowledge for the sake of knowledge isn't worth the risk
for me. Besides, all it will show is if there is a chromosomal
defect, not the degree of such an issue, so we still would not know
if/ how severe any mental retardation would be. Some of the
possibilities of a chromosomal defect after Down's would be Trisomy
18 or something of that sort. But things that are indicative of
Trisomy 18 include a cleft lip/pallet and more, which I can not
recall. The Dr. has said we do not have a cleft, nor the
abnormalities of the twisted hands etc.
So as to the "glass half full" part of me, I am clinging to the
cysts possibly clearing up and the heart not being as bad as they
think. The genetic counselor says it sometimes happens that things
clear up on their own and babies are born that were once thought to
have major issues in-utero, with no signs of problems after birth.
We are not in denial over this news, but we covet the prayers of
those who are asking for mercy and a healthy baby. God is the God of
Miracles, and he hears YOU!
With the remaining time in my pregnancy the Dr. thinks things should
go as "normal". The team I will be followed by includes my regular
Ob/Gyn, a Perinatalogist (high risk specialist) and a Pediatric
Cardiologist. I have an appointment on Wednesday to see the
Cardiologist who will give the baby an echocardiogram (more fancy
ultrasound) to see the severity of the heart problem. Then, I will
be tracked by the others in Sacramento with more ultrasounds and
things like that. They did tell me that I will deliver in Sacramento
because that is where the best care can be given to us, and more
than likely I will have a C-section because the stress may be too
much on her heart. It's funny (well, not really) that my biggest
fear is to have a C-section and the Lord is asking me to trust him
in this as well. What a test.
Brian in all of this is not doing so great. I know that it is not my
fault, but I kept telling him that I am sorry. After all, she is in
my body, and I can not protect her. He just sat in the chair tonight
holding Mathias and smelling the blankie of Zack. Sounds gross, but
it is a sweetness you can relate to if you have a kid with a
Airenne too is shaken. She cried a lot and prayed for mom. That was
nice. Zachariah is wondering why I'm crying, as I don't usually do
and busies himself with literally kissing the tears off my face. (I
think he likes the saltiness).
I am in a tail spin as crying has dried me up.
I've looked for some info on the web as to these conditions and was
actually encouraged. But mostly, I am going to wait on Him. Please
pray for our family, for all of us, even baby Charlotte Nicole.
Daddy picked that one.
Love to you all,