These last few weeks have been packed with doctor’s
appointments, so I have waited for them to slow down before providing an
update.
Doctor appointment 1: Ultrasound
We had a “routine” ultrasound appointment with Texas
Children’s. I say “routine” because for most women they don’t do as many
ultrasounds as we have, but this was just an appointment to check on baby and
look at some measurements. I have considered the frequent ultrasounds somewhat
of a blessing. It has been wonderful to get to check on our little guy so often
and get to watch him on the screen. It has also provided a little peace of mind
throughout the process. The first thing I look for is that flicker of a
heartbeat and when I see it I am able to relax for the rest of the appointment.
A friend of ours is letting us use their fetal Doppler and I have been able to
check baby’s heartbeat whenever I want. I use it every day, sometimes twice a
day, and it’s nice because that’s my little moment with him. I typically will
check his heartbeat for myself before all doctor appointments. Anyways, the
ultrasound went well. He is still growing though his measurements are about a
week off. The doctor said they don’t consider that to be an issue until his
measurements become more than 2 weeks off, so that is good. We discussed the
fact that our amnio results came back clear! Meaning we aren’t looking at a
genetic defect as the cause of any of this. That was a huge hurdle to cross and
gives us a better outcome. The Cystic Hygroma is not growing and there is an
indicator it might still be getting smaller. Our last appointment measured the
CH in the 12th percentile, this time it was in the 9th.
They said this could be part of the bell curve meaning an area of fluctuation in
measurements, but still it isn’t growing. Overall a positive appointment and I
am scheduled to go back in 4 weeks.
Doctor appointment 2: OB
I went in for a regular OB appointment to check on me. My
vitals were good and no issues seemed to arise on that end. My doctor said she
feels like such a kindergartner compared to everything Texas Children’s is
doing for me. We discussed the realization that we will be needing to transfer
my care completely over to Texas Children’s based on the results of the
previous cardio appointment and the care the baby would need. We went ahead and scheduled my glucose
tolerance test and were going to start on 2 week appointments until I had to
transfer. She had a long talk with me and answered questions I had about some
of the issues we were facing and assured me we were in good hands with Texas
Children’s (something I have never doubted).
Doctor appointment 3: Cardio
Our little guy was much more cooperative this time and in a
better position than last time. The doctor was able to get much better images
and resulted in me only being on the table an hour to hour and a half. These
ultrasounds aren’t as exciting to watch because they are only looking at the
heart and I have no idea what I am looking at when they take all their images.
At one point the dr. brought in a colleague of hers to take a look. It was
awesome to hear them going back and forth talking about what they saw. It was a
bunch of medical talk and I had no idea what any of it meant, but it reassured
me that we were in good hands and these people were freakin geniuses. After the
ultrasound we sat down in a conference room for our consultation to go over the
images and discuss the findings. Nothing really changed from last time other
than the images were better this time and rather than guessing at what she was
looking at she knew. She starts by
drawing a detailed version of a normal heart and then goes through how our baby’s
heart is different. There is a valve that slows down the blood flow coming from
me into the baby that she has not been able to locate. This is what she brought
her colleague in to look for as well. Normally when this valve is not there you
see a gush of blood flow coming into baby that can cause complications. The
good news is she doesn’t see that rush of blood flow. This could mean the valve
is there, but either small or hidden or something else. She wasn’t overly
concerned with this since it still seemed to doing what it needed to be doing.
There is a different valve in the heart that is very leaky. This can cause
fluid buildup around the heart and extra stress on the baby. The good news is
though it is very leaky there are no signs of stress on the baby. He still has
a large hole in the bottom chamber of the heart, but the good news is he at
least has 2 bottom chambers. His aorta is the other big issues. The aorta valve
that the blood goes through to get into the aorta is small. The blood is having
difficulty getting into the aorta which has resulted in a smaller aorta in
general. This is where all the focus and attention will be when he is here. It
isn’t too dangerous for this to be the condition at this point because he is
getting everything he needs from me. It becomes a major concern after he is
born and his heart is supposed to be pumping blood to his entire body. She
proceeded to go through all the different possible surgical options for
repairing this issue. This is when things get overwhelming. It could be
something as “simple” (there isn’t
anything simple about open heart surgery) as one or two surgeries to fix the
blood flow into the aorta and then stretch the aorta to make it larger to
complete heart reconstruction where they start moving things around and making
pieces out of other parts. Completely crazy to try and process. He could be
looking at anything from 2 ½ weeks in the hospital to 3-4 months in the
hospital. The hard thing for me to process is we won’t know exactly what route
is going to be needed until he is here and gets evaluated and they know exactly
what they are working with. That isn’t easy to hear for someone who is super
organized and likes to be prepared and on top of things. It was decided at this
point that I would be transferring my care completely to Texas Children’s and
there is no reason to postpone that. I go back in 4 weeks for another echo and at
that point should be all transferred over and will possibly have the OB appointment.
We might even be taking our tour of the hospital and getting a little more information
on what we can expect during our time there. So, we can be somewhat prepared
for what we are expecting.
I have had a really hard time processing all this lately. I
have focused so much on getting through the pregnancy and to delivery. I no
longer am hearing the phrase “IF you make it to delivery” which has been nice,
but all these doctor’s appointments have made me realize it is at that point
that the journey will start. We have such a battle and long journey after that
point. All I keep saying is I want my baby to be ok. That’s all I have ever
wanted. I don’t want him to have to go through any of this and I feel
completely helpless. There isn’t anything I can do to help and fix this for him
and it breaks my heart. I try not to dwell on some of the joys we have been
missing out on. Our pregnancy has been filled with a lot of stress and scary
moments and I know once he is here, I won’t care about anything I might feel
like I have missed out on. Just the thought of a baby shower is stressful. What
do I plan for? I have no idea when I will get to bring him home. I have no idea
if we will be selling our house and moving in with my parents to get through
things? Will I have a nursery to decorate
and prepare? Do I make sure I stock up on newborn diapers or will we be in the
hospital through that whole phase? Same thing with cloths, do I plan on having
newborn cloths or should I focus on 3-6 month cloths? These things seem so
stupid to worry about now that I put it on paper, but it’s hard not being able
to see the big picture and figure out the little details. I know these things
aren’t the important things that matter at this point, but it all just adds to
all the uncertainty.
I pray that God continues to protect our baby. He has come
so far and God has done so much for him already. I pray for the doctor’s and
their expertise. I pray that everyone has the knowledge to make the best
decisions for him. I pray for peace and comfort for Trey and I and our family
friends as we all go through this journey together. I have put this entire
process in God’s hands and I continue to seek comfort in that. When I feel
myself getting overwhelmed I try to remind myself of this and that He is
walking us through this journey. We have had so many amazing people praying for
us through this process and are eternally grateful. We ask that people keep the
prayers coming. Depending on the day, I usually have one of our church songs
playing in my head. It’s random every day and I think God puts the song there
for a reason. Today the song has been, “I will not be afraid. You are stronger.
You are faithful.” I do find comfort in these words and I know we will get
through this.
