Our first appointment was with the Pediatric Cardiologist
for the ultrasound. They worked quickly because Mac was cooperating and we were
able to complete the full ultrasound in 30 minutes. We then waited while the
doctors talked. We spoke with the cardiologist who confirmed that Mac does have
Double Outlet Right Ventricle with Transposition of the Great Arteries
(DORV-TGA). He said however that the size of the left side of Mac’s heart did
not seem to be an issue. His concern is that the Mitral Valve may not be large
enough to handle the amount of necessary blood flow. He told us that at this
time he thinks that the onetime DORV-TGA procedure is still a possibility. He
would not say that it was a definite at this time though. He told us that what
would happen is that we would have another appointment with our Pediatric
Cardiologist here in Greenville in 4 weeks to check his growth. We will then
have to wait until we go to MUSC for delivery. Our induction date is scheduled
for September 3rd. This is the Tuesday after Labor Day. The doctor said
that after delivery Mac will be placed almost immediately in ICU where they
will use his umbilical cord as a port for food, medicine, etc. This means that
we will not be able to hold him during the time before surgery. During the first
few days they will run more tests and meet to decide on a final plan. He told
us though that even with all of the tests and planning they still sometimes
have to alter those plans when they open the chest and actually see the heart.
As long as we continue as planned with the onetime surgery we will be looking
at a minimum of 4 weeks at MUSC. He said we could even be looking at as long as
8 weeks with the onetime procedure. The reason for this is that they have to
monitor him through the recovery process and then we have to be sure that he is
able to do all of the developmental things necessary to be able to eat. He said
that we will just have to wait until he is ready.
We then met with the OB and they basically just walked us
through how and when we will be induced. I am glad to have a date to look
forward to meeting my sweet baby boy. We
will continue all of our normal doctor visits here in the upstate so we won’t
have to go back to MUSC until he is delivered.
All of this information was overwhelming. The thing that we
are seeing throughout this process is that if we just WAIT on the Lord, He will
guide us with each step. We were talking on the way home last night and
compared our journey right now to a path of stepping stones. We feel as though
we are walking down this road with no vision as to where we will step next, but
each time we pick up our foot to place it on the next stepping stone, He places
the stone under our feet. My grandmother cross stitched Proverbs 3:5&6 for
me when I was a teenager. This verse is the one I am clinging to most these
days. “Trust in the Lord with all your heart, and lean not on your own
understanding. In all thy ways acknowledge Him and He will direct your paths.”
He is doing just that. Our path isn’t laid out for us as clearly as we would
like, but each stepping stone is added with each step we take.
One way that God has blessed our family is through the
CrossBridge Ministries. This wonderful ministry helps families like ours. They
provide housing nearby and many other services to help families when they are
away from home and caring for a baby with special needs. After meeting with the
doctors we met with Melissa from CrossBridge to discuss our family’s needs and
see how they could help us. We are overwhelmed with the amount of support they
provide to their families, which we are now one of… PRAISE THE LORD! We are
planning to stay in one of their houses near Mount Pleasant during the times
when we cannot stay at the hospital. They will also be helping us in other
ways. This is one of those times when I look around and know that God placed
that stone under our feet just in the nick of time. We no longer have to worry
about the stress of finding affordable housing while we are there for our
extended stay. We will also be sharing our housing with other families like us,
which I believe will be an additional support system during this time.
When we take a step back and look at our situation we cannot
help but be overwhelmed with the grace of God. He has provided us each and
every thing we have needed up to this point and we know that He will continue
to guide our steps and provide for our needs. Thank you to each of you who
continue to lift our family up daily in your prayers. We feel them. Thank you
to my parents who are helping us with one of our greatest concerns, making sure
that Harlie has everything she needs to continue to grow into the amazing young
lady she is becoming and continues to feel safe, secure, and loved at times
when we are not able to be there. We cannot imagine going through the next few
months without all you.
We are blessed to be Mac’s family and we ask that you
continue to pray that his heart will either be healed completely or continue to
develop in a way that makes the DORV-TGA procedure the best option. Please pray
specifically that the Mitral Valve will be able to do its job and we will not
have to have any other procedures after this one to insure that Mac can testify of how God healed him and fulfill his purpose in this world.
Mac is a miracle in the making!
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