I am writing to let everyone know
about the current situation that Jeremy and I are facing. Jeremy and I received some very devastating
news about our baby and wanted our friends and family to be able to follow our
journey. I am not writing this for
people to feel bad for me, I am writing this for several reasons. I feel like when other people have gone through
similar situations it has always been kept hush hush. I want people to understand our situation and
be given the correct information (we all know how small towns are). This is a
real life problem and I want to be able to educate people. I am also hoping to
be connected with someone that has been through what we are going through. I also hope that my story will be of comfort
and help others who are currently or may go through similar situations in the
future. The last reason is that I don’t want it to be awkward when we meet on
the street and you ask me about the baby.
I would rather have you know the situation so you don’t feel bad about
asking me. Even if you do ask me, or
have already asked me, it’s OK. I would
never be mad or offended. I am happy to
share with you what is going on (even if I cry).
Last week Jeremy and I went in for
our 22 week routine ultrasound. Prior to
the 22 week ultrasound we had had an ultra sound at 9 weeks and everything had
been going “normal”. As soon as the ultrasound
tech placed the wand on me, I knew instantly that something was wrong. We found out that there was a large tumor the
size of the baby and the baby had lots of fluid in the abdomen and chest. The ultrasound tech had never seen what was on
the screen. I began to cry and cry. We went down to see my Dr. (who is AMAZING)
and they were already on the phone with St. Mary’s Hospital in Madison making
me appointments. I sat in the Dr.’s
office unable to stop crying. The nurse
cried with me and my Dr. sat with her arm around me. They couldn’t tell me anything, as they were
unsure of exactly what it was that was being seen on the ultrasound. I went home to “try” to sleep so I could get
up to go to St. Mary’s in Madison right away the next morning. My mind went crazy all night long. I of course tried to refrain myself from Google
but in this situation that was impossible.
I did find some information that helped prepare me for what was going to
happen the next day. I knew there was
going to be a lot of tough choices and questions thrown at us but ultimately I
knew my baby was not going to survive.
As I sat in St. Mary’s hospital
waiting room, I looked around and wondered if all these other women were going
through a situation like mine. I was
scared. I thought I would be just a
number to the medical staff and they would throw me in a room and only come
back to give me bad news. I was
wrong. These people cared and they treated
me like royalty. I didn’t go down 2
floors to go the lab, instead, they came to me.
Everything was all about me and making things as easy on me as possible.
I got into the ultrasound room and
again just cried. We got to see the baby
and masses on the ultrasound, just as we had the day before. I kindly asked the ultrasound tech if she had
seen this before and she said “yes”. I
was somewhat relieved that at least I wasn’t going to be on some medical show
for my strange diagnosis but I knew things were bad. The ultrasound didn’t last long because with
the condition the baby was in there wasn’t a whole lot to see. Next came the heart breaking news. The Dr. came in, along with a genetic counselor, to tell me what was wrong with my baby. The baby has Cystic Hygroma, which is a large
mass that was wrapped around our baby’s neck like a donut. The mass was just as big as the baby (this
would explain the pressure and pain I have been having). The baby also has hydrops which is when fluid
fills the baby’s whole body. In our
case, the baby has the most severe case of hydrops. So, for all those people that didn’t think I
was getting big, you were wrong. I am
actually way bigger than I am supposed to be at 22 weeks. Not only do I have a baby but also a large
mass and a very large uterus due to the conditions. Both of these conditions
are caused by something else, some sort of chromosome abnormality. This is nothing that I did, or could have
prevented. It happened at conception. They proceeded to give me the news that
my baby was going to die. With the fluid
over-load in the body, the heart would eventually stop. They gave the baby 0% chance of
survival.
Then we had to start making
choices. I was given the option to
terminate the pregnancy (which we would have to jump through a lot of loop
holes because of laws) or I could continue to carry the baby until it dies. Once
the baby’s heart stops I would have to go to Madison to deliver my deceased
baby. I chose the second option. I just could not bring myself to terminate
the pregnancy (even though baby has 0% chance of survival) when I can feel the
baby moving (which I can feel more than a normal person at 22 weeks because I
have no, or very little amniotic fluid) and can see the heartbeat. How does someone handle this?? I please ask that you do not comment about
being pro-life or not. This was the
hardest thing ever for me, and I would NEVER judge a mother on her decision. NO ONE knows what it’s like until they are put
in a situation like this. This
definitely made me be more of an open minded person. The next choice we had to make is if we
wanted genetic testing done to find out which chromosome abnormality the baby
has. Some examples would be Down’s, Edwards, Turners, and many more. I opted out of having an amniocentesis at
this point but did have some blood work done that will tell us some
things. For me, I am not sure I want to
know. They did tell us that there is a
99.9% chance that this would never happen to us again and that we could not
pass this down to our children. At this
point, it didn’t matter what abnormality had caused this; the outcome was going
to be the same.
This is by far the hardest and
worst thing I have EVER been through. If
you’re reading this, I ask for you just to say a prayer for us. I could carry this baby for weeks or months
before the baby’s heart will stop so there are many unknowns. You may see me at
work or around town and PLEASE don’t be scared of me. I feel like I am going to be the person that
someone sees and runs away because they don’t know what to say to me. Speak to me as you always would and ask me
the same questions that you would always ask.
It is okay to ask me questions about the diagnosis. It helps to talk about it and I will not be
offended if you have questions as I’m sure you will have 1000 things running
through your head just as we did when we found out. The toughest months are to come and I hope to
continue to post about our journey.
Again, PLEASE (even if you don’t
regularly pray) would you stop and say a short prayer for us! I believe in the
power of prayer and feel this is the only way we can get through this.
Thanks for all the love and support!
We Love you all
