More bummer news w/Letter to Medical Team (Sep. 27th)

I wish that I could say that today was great, but it wasn't. I wish I could say that I still feel great, but I don't. I'm really struggling tonite as I write this email.

I returned to the cardiologist this morning not really hopeful that
things were going to be dramatically different, but hoping that I
could make a dent on the heart of my doctor. So I set out to witness
to her, and feeling bold I spoke openly about Christ which seemed to
actually comfort me. She did the ultrasound for about an hour and a
half and then told me some things I wasn't prepared to
hear....again!

It seems that Charlotte's hole in her heart has become more
complicated by the fact that her valves are also not right.
Corrective surgery for the hole seemed simple, but now there is a
more challenging problem of having to re-direct the valves too. It's
much more delicate than just closing up the hole, it's getting the
valves lined up right and pieced together so there is adequate flow,
keeping in mind not to constrict them or leave them too loosely
open. Kind of a tricky operation. She said Charlotte could not
survive with out the surgery and they try to have it done at about 6-
9 months old, so the baby would be bigger and more healthy.Until
then, medicine would help to sustain her, but she wasn't clear if
she would be allowed to go home from then.

The twist is that because of this "new" finding within her heart,
the cardiologist says the prognosis is 'lining up more with the last
Doctors' suspicions'. Meaning they seem to think she really has T18.
The other thing that shocked me was the conversation we had about
the baby's small chin. The perinatologist had mentioned it the last
visit, but I really didn't think it was anything other than a
facial anomoly that may be kinda cute...big deal, she'll have a
small chin.

But the big deal is that if her chin is so severely pushed back that
it would interfere with her ability to breathe or swallow. It may
require corrective surgery to draw it out more or they may have to
insert a Tracheotomy in her throat so she can breathe and a feeding
tube directly into her stomach, so she can eat. These are not
definite things that are sure to happen, but they are showing up on
the ultrasound. Then again, nothing is sure...right?

You may be wondering "but didn't she give them a letter saying not
to discuss these things?" and yes, I did. But it casually came up
as she thought I already knew about that part of the small chin
problem. Needless to say, my chin was on the floor.

She finished telling me that we should expect to have what they call
a "blue baby" (most notably around her lips and such) and that she
will actually have blue tinting until her heart has been corrected.
This also means that until that time, it will affect her breathing
and she will most likely sound like she's drowning because her lungs
may get wet. Can you believe it? I can't seem to wrap my head around
this one. Especially because if she has T18, they won't do the
surgery anyway. The doctor told me that Brian and I need to discuss
how much intervention we want them to perform when she is born. I
don't even know where to go with that.

I feel like I'm about to fall apart. I don't even know how I feel. I
do not doubt that God can change things in an instant, but I'm
starting to wonder if He will. Just 2 days ago I was on top of the
world, really believing that God plans to heal her completely, now I
don't know what I believe. I KNOW that His will is perfect and
whatever He wants is for my good and His glory, but I feel like I'm
waffling.

A friend of ours has put things into words wonderfully in that I am
in a 'spiritual dog fight'. Right now I feel like I'm getting chewed
up pretty bad. It's almost debilitating. So please in your prayers
ask for mercy for me. And for Brian. This has really done a number
on him. He told me that he is not feeling close to God at all.
Things with his work are getting bad again and I just know that
Satan is using it as a distraction from Brian turning to God. He has
battled depression before and now he's worried that he won't be able
to bear things much longer. I need him to get strong, as I can't do
this alone. He always shuts himself off from things like this, not
letting others in, so please, please, keep him in prayer that he
will grow close to Jesus again and that we will be able to shoulder
this together.

I'm sure that in a few days I will see more clearly, and I am still
seeking comfort from Jesus as I know He is my Fountain.

I thank all of you who have carried me in prayer thus far. Please
keep it up!

Thank you,
Christine

*********This is the letter I gave to the Cardiologist today*******
Sept. 26, 2006


As a patient in what has been considered a high-risk pregnancy, I
wanted to request that any or all future findings that have not been
disclosed as of yet, remain in my medical records, but are not to be
discussed with me, unless there has been improvement from an initial
diagnosis.

My husband and I have been given adequate information as to the
findings of some abnormalities via ultrasound on our unborn
daughter, which have been devastating, to say the least. Her father
and I believe that the healing work that is to be done will be, by
the hands of our Savior, Jesus Christ who is tenderly knitting our
baby together in my womb. I was recently told by an associate of the
medical team who provides care for our family that no amount of hope
can change things from what has been found in the specialized tests
performed. But our family and extended network of people in prayer
for us couldn't be more aware that "rejoicing in hope, patient in
tribulation , and continuing steadfastly in prayer" can change
things, if even only perspective of the afflicted.

I would prefer not to discuss any additional findings that would be
disruptive to a harmonious expectancy of a healthy pregnancy and
delivery, however I do recognize the need for medical professionals
to be prepared in the event of an unfortunate situation. I will
allow the skilled professionals of Kaiser Permanente including
Doctors, Nurses and Specialists to treat the remainder of my
pregnancy in the capacities necessary to carry to term and deliver
accordingly, I just ask that I am allowed to have as much joy and
worry-free experiences this wonderful time in my life may bring. I
would like to have a copy of this letter included in my file and
reserve the right to ask questions at any point in time.

Sincerely,

Christine Curry


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