The Everydayness of Stephanie

Not sure where really to begin. I apologize for not
updating quickly and as things happen. I probably should though. I want everyone
to know what is going on so prayers can be prayed but sometimes I just do not
have the strength to do it. I definitely am in a funk, a slight depression and
just completely overwhelmed. I am unsure of how to put these feelings into
words.

Zoey has been moved up to the PICU (pediatric intensive care
unit.) On the floor her breathing was becoming very labored and she was working
so very hard to breathe. Her oxygen levels were dropping and the pneumonia was
not getting any better. Her lungs were full of mucous. The left lung was
especially bad and she was barely passing any air at all through it. She was
brought up the unit to be placed on a CPAP machine. This would help to keep her
lungs open with positive air pressure and give Zoey a break. This way she did
not have to work as hard to breathe. Before we came up the doctor had a talk
with me. A talk that I will never forget. He explained to me that he spoke with
Zoey's neurologist in length about her condition. Zoey is very sick. Yes, she
does have infantile spasms. Yes, she does have partial focal seizures. These are
horrible conditions alone not to include everything else that is going on with
her. Her brain is not developing correctly. There is something underlying that
is causing these problems and we may never know what it is and in turn never
know the proper way to treat it. With all that said, things look bleak. Zoey’s
neurological condition and status are determining the rest of her future. I know
all of these things. I have taken the time to prepare myself for the worst but I
never thought that this would actually happen No matter how hard you try to
prepare yourself for something like this, it will never make it any easier. I
never thought I would be discussing what Zoey’s treatment plan would be. He told
me that Derick and I needed to discuss how far we wanted to take this and what
exactly we were willing to put Zoey through. I literally felt the life sucked
out of me at that moment. I do not want to make those decisions. This is my 5
month old daughter. She has not had a chance to live her life. She is not 90
years old and I can say that she has lived her life to it’s fullest. But at the
same time, what about her quality of life now. Since day one Zoey has rapidly
declined. She sleeps and seizes. Besides her first day of life, I have never had
a moment where I felt connected to her; where I felt like she was in the world
with me. I have never had her look into my eyes and I know that she saw me or
was a part of my world. She has fought so hard to be where she is today. I have
never seen her awake to enjoy the world around her. I wonder if she even knows
that she exists. She is never awake or able to move any part of her body. This
is no life for her. Oh the pain…I am so scared. I am scared to loose my child.
These have been the longest 5 months of my life. It seems like I have been doing
this for years but at the same time it seems like just yesterday I was pregnant
and giving birth to my daughter.

Our time in PICU has been overwhelming
and we have had a couple of scares. We actually had to change a to Bipap machine
instead of a Cpap. A bipap helps with inspiratory function as well as
expiratory. She is breathing on her own but she is working very hard to do that
and not talking deep enough breathes. She will tire out very quickly at this
pace and that in turn can cause other problems. We have almost had to intubate
twice but each time Zoey has pulled out on her own (or by the strength of god.)
She is so strong and such a fighter. She has fought through some very rough
times and I am sure that there are more to come.

Derick is here with me
now. He came up Monday and is going to stay until Thursday. We have a family
meeting scheduled tomorrow with the doctor, social worker, case manager and
nurses. This will be to discuss long term care for Zoey. This will include
palliative care options, intubation, a tracheotomy and if any of this will help.
From the neurological stand point, Zoey is not going to get any better. Her
brain is not developing at all. There is no communication between both sides and
there is very little myelin. Without the development of myelin she will not
live. If there is not normal function in the brain, there is not normal function
anywhere else. She is rapidly declining and has been doing so since birth. She
has lost a lot of function. They only expect this to get worse.

I have
no idea what to do. I want to fix all of this. I want to yank her up out the
hospital bed and take her to another hospital. I want another opinion. I want
some one to be able to tell me what is wrong with my daughter and what we can do
to fix it. I talked with Zoey’s geneticist on Friday. We discussed how we have
tested for a lot of things, over and over again, and everything is negative. He
does still believe that it is something genetic and that we just may never know
what. I am not happy with that answer. I can’t fathom loosing my daughter
because no one can figure out what is wrong. Well, what about the next child
that this happens to? You don’t just say “oh, we had that happen to a girl once
before.” I keep replaying in my head what I could have done differently, where I
could have taken her, what I did wrong?? The geneticist says that it is no one’s
fault and there is nothing that we could do to change this. Derick and I just
carry an abnormal gene and they met up at the wrong place. He told us that if we
choose to have more children there is a 25% chance this could happen again.
Another thing that makes me very upset but I will not even get into that now.

Derick and I have no clue what our decisions are about Zoey’s care. I
don’t want to loose her and neither does he. At the end of the day, we want to
know that we did everything possible for a our little girl. We want to make sure
that we left no stone unturned and that we never gave up. But then there comes a
point when we don’t want to see her go through this anymore, where our heart
hurts for her and where we feel selfish for putting her through all this. I
would never be able to live with myself though, knowing that I just gave up. I
just want to crawl up in a hole and not come out. Derick has mentioned that he
would just love to run away and not come back. The situation is just too hard
and overwhelming to deal with. I can’t believe that people actually go through
this everyday. I hurt for everyone that has to make these decisions.

I
want to ask that you continue to pray for Zoey’s miracle and COMPLETE healing.
“Again, I tell you that if two of you on earth agree about anything you ask for,
it will be done for you by my father in heaven. For where two or more come
together in my name, there I am with them.” Matthew 18:19-20. I am still
clinging to hope that this can all change and that our God will perform a
healing and miracle in our Zoey’s life. I ask that you pray for strength for
Derick and I. That we are able to walk by faith and that we continue to place
one foot in front of the other.

I apologize again for not updating. I am
sorry for not calling or answering my phone. Some days I just can’t do it. I
just can’t go through it again. We love you all and thank you for your support.