We left yesterday at about 8:30 AM and started our way up here to Cincinnati.
Because I am pregnant we needed to stop every hour and a half or so for
bathroom breaks but also so I could get out and walk around. We made it in at
about 6:30 PM and checked in to the hotel. I posted on the page, but wanted to
share it again here - we were SO blessed to find that someone had paid for our
hotel stay upon our arrival. We are already weary about how finances were going
to play a part in this trip because we are trying to prepare for the massive
amount of medical bills from the already existing heart condition. My dad and
Josh headed out to pick up some pizza and we just ate in the room and got some
things ready for the morning - we had to be up and ready by 6 AM! I probably
dosed off around 11:30, but woke up from 1:30 - 2:45 and had a snack (I guess
me not being able to sleep made me have the munchies). I finally dosed back off
around 3 PM.
Morning Appointments
Fetal MRI - Waking up at 6 AM was pretty difficult - I was tired and
hungry ( I couldn't eat anything after the midnight snack I had until after my
MRI that ended at 8 AM). We headed to the hospital and got checked in to
Radiology at about 6:30 AM and were called back pretty quickly. They had me
sign all sorts of forms and then gave me the instructions. My parents waited in
the waiting room, but Josh came in to the MRI room with me. I had to lay on my
side and be still for at least an hour or until they were done taking pictures.
The only issues they have with the fetal MRI's are that they can't really
control the baby's movements, so they have to take a good amount of pictures.
When all was said and done, it had been an hour and a half of total
uncomfortableness, but I made sure not to move a muscle so they could get
really good pictures and a better idea of what was going on. After all, this is
the MAIN reason we are here. I felt baby Murphy kicking around ALL night long
so I thought for sure he would be still - HA! He was jumping around like he had
kickboxing practice the WHOLE time but they did get all the pictures they
needed.
Ultrasound
- Once
the MRI was over we headed to have an ultrasound done and my mom and dad joined
us. The appointment was scheduled for 8 AM, but we got over there around 8:30
AM. We have had these done in Atlanta, but they really wanted to do one of
their own just to have a good look at everything. This took about an hour and
we were able to head up to Pediatric Cardiology for our echocardiogram around
9:45 to register and wait for the 10:30 appointment. We didn't get any
"printouts" from this ultrasound but we did see him sticking his
tongue out LOL.
Echocardiogram - Once we registered we went back about 10:25 and started
the echocardiogram. I had been eating somewhat throughout the day, but I guess
the prolonged laying on my back and lack of food caused me to become VERY
nauseous and dizzy. We had to stop half-way through so I could sit-up because I
was really afraid I was about to pass out. I have never felt like that before
and would like to NEVER feel like that again. The technician had me lay on my
side for the remainder and that seemed to help. After she finished she took the
images to the doctor and he came in about 30 minutes later to discuss what they
had found. He confirmed everything we had already heard in Atlanta in regards
to the heart condition, which was somewhat reassuring because everything was in
line. He didn't really discuss much else with us because he would be in our
team meeting at 2. We left and headed to get some lunch before the start of our
meetings at 12:30 PM.
Afternoon Appointments
12:30
PM - This
was our meeting with the RN assigned to our case, Avery. She just went over
some details in regards to what may be happening with the baby and go over the
team meeting we would have at 2 PM.
1:00 PM - We met with Erin the social worker assigned to our case. She
reviewed financial assistance options and the Ronald McDonald house in the
event we would need to stay in Cincinnati.
1:30 PM - We met with Jackie the genetics counselor. She reviewed that
our amnio results were all negative (which we already knew) and discussed that
because this was not genetic related that the risk for a future pregnancy
having a heart defect (any heart defect) was low - between 3-5%.
2 PM
- This was our team meeting, the thing we had been waiting for all day. We met
with the pediatric cardiologist, surgeon, maternal-fetal high risk doctor, and
a neonatologist. We would finally find out if the lung issue is related to the
heart defect or if it is another anomaly all in itself. From the MRI images and
the ultrasound, all of the people in our meeting had come to the same
conclusion. They were able to tell us with confidence that the “brightness” in
the lungs and their swelling/filling with fluid was related to the swelling
caused by the Tetralogy of Fallot with Absent Pulmonary Valve Syndrome. This
was a sigh of relief because we weren’t looking at an ADDITIONAL issue in
regards to the heart, just something as a sort-of side effect from the defect.
They all wrote letters that will be sent to the respective doctors following
our care in Atlanta. Babies with Tetralogy of Fallot with Absent Pulmonary
Valve (ToF APVS) have a high risk of still birth later in pregnancy – not the
greatest fact but it is the truth. I will continue to be monitored weekly, and
once I hit 28-30 weeks they will start antenatal testing and monitoring me more
closely. The longest they want me to carry is 38 weeks, so it looks like baby
Murphy will make his big arrival sometime between May 5-6, and we can FINALLY
we can reveal his name! The doctors didn’t really give us any estimate on the
time frame of surgery because, as always, it depends on how he is doing once he
is born.
I wish I could say that I am “extremely” relieved that it was not a separate
lung issue, but I am not. The heart condition is VERY serious and VERY rare and
it is still a big deal that the lungs are showing these signs early on in
utero. The doctors stated that they have only seen this happen one other time
in the past year at their facility. The doctors did say that once we received
the first diagnosis in Atlanta that our doctors notated in the chart to almost
expect lung brightness, but when they saw them continuing to get brighter it
through up a red flag which made them want to send us up here to Cincinnati. I
am SO glad we came, because if not we really would not haven’t been sure what
the cause of the lung concern was throughout the remainder of the pregnancy.
Luckily we will be able to head back to Atlanta and continue the pregnancy and
also deliver there (another relief, we were worried about having to come back
to Cincinnati at a later date). The next weeks of pregnancy (only about 11
left!) will be spent preparing for baby Murphy and the unknown future after he
is here. The financial burden is something that scares me as well. Medical
expenses are something that cannot be avoided and we will do ANYTHING to
provide for our baby boy, it is just intimidating.
I have to say we are so overwhelmed by your prayers and support so far and so
thankful. Words really cannot even express how grateful I am. God has answered
our prayers in regards to the lungs, and I know He has a plan for the rest of
the pregnancy and baby Murphy’s life. He is going to work through this
experience and diagnosis in ways we cannot see- and ways I am still struggling
to see. I just wish my baby boy was perfectly healthy and wouldn’t have so many
health concerns already, but I have to trust that God will prepare us for the
next few months and we will be able to fully rely on him. I will continue to
update everyone as these next weeks progress. Specific prayer requests are that
nothing changes significantly in the negative direction. Any negative changes
and/or added worries could cause us to head back to Cincinnati. Please pray
that baby Murphy stays safe inside and the right time for delivery is chosen.
The risk of still birth is something that is so terrifying and overwhelming. Since we spent all day driving yesterday and all day in the hospital today we are staying here until Saturday and using tomorrow as a day to rest and try to relax before heading back to Atlanta on Saturday.
Praising God for His blessings today and answered prayers. Thank you prayer
warrior friends!
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