Pure exhaustion and running on
fumes, but so thankful to have had the opportunity to go to Houston yesterday
for a second opinion on Easton’s heart. We started the day off with a hospital
arrival time of 7:00 where we opened up the women’s pavilion for the day. Our
first appointment was a comprehensive ultrasound that would scan Easton’s
anatomy before going in for an MRI.
The purpose of the ultrasound and then MRI was to tell the depth and
complexity of his “left side heterotaxy,” in regards to his stomach cavity
organs (intestines, spleen, kidney, gall bladder, pancreas, liver, etc.). After
an hour worth of ultrasound, the pediatric radiologist came in to check the
images to see if we needed to proceed with the MRI. The radiologist was able to
get all of the images he needed and we did not have to proceed with the MRI,
which was great news and another procedure to not have to go through. He also
gave us the first piece of GOOD NEWS…Easton’s heterotaxy, specifically, in his
stomach cavity, is not as severe as originally diagnosed. In the original
diagnosis, we were told that they believed he was missing his spleen, had
mal-rotated intestines, off positioned stomach, liver, and potentially several
other organs. He has a spleen (which is wonderful news because it means that he
won’t have to live on penicillin his whole life, to fight off infections), his
liver is slightly off positioned but not detrimental, and his intestines may
need surgery to “tack-down” but it is not for certain and we won’t know until
his birth. If he does need surgery for his intestines, the surgeon seemed
confident that it was an easy procedure with promising outcomes for his
intestinal function. Finally, some good news! We were excited to hear that
what was going to be a long road of reconstructive surgeries for his “stomach
cavity” organs would no longer seem to complicate his long road of reconstructive and complex and delicate
heart disease surgeries.
Our big appointment with the
“heart team” was scheduled to start at 1:00, and they did not waste a second in
getting started with the echocardiogram. An echocardiogram is a fancy word for
a heart ultrasound that looks for the detailed and specific intricacies of the
heart. We had a “fellow” start the heart echo, right at 1:00, and he scanned me
for over an hour, not really talking or saying much through the scan. You see,
you either get a tech who can scan and talk or someone who just doesn’t talk at
ALL through the entire scan. Most of you know me—which I am a talker, and I
hate that awkward silence and the “mmhmming” sounds during any kind of scan.
Knowing that Easton has heart disease, I hate those noises that just seem to
confirm that things aren’t working and connecting like they normally should.
I’d rather just chat throughout the ultrasound and the tech takes my mind off what
is really happening. It makes me cringe to think that someone else is looking
at Easton’s heart and thinks “These poor people…just unaware of the road ahead
of them.” After the fellow came in and completed his portion of the scan, a
sonographer came in and did another 45 minutes of scanning, but she was
talkative AND not to mention a LSU fan and SAINTS fan. I liked her. Stephen and
I enjoyed the conversation on football and just all things Louisiana. By the
time that she was done scanning, I had been laying down (on back, which isn’t
comfortable) for almost two hours. She left us and said the cardiologist would
the come in and may want to do more scanning. We waited about ten minutes on
the cardiologist and she came in and said, “I need a double shot of espresso
for your baby’s heart!” It kind of made me giggle (to just take everything in
stride) that a skilled cardiologist was put to the test when viewing the
abnormalities and intricacies of Easton’s heart. She scanned me for another
thirty minutes, and then was ready for the round table discussion. This time
around, I wasn’t terribly anxious because my phone was literally going off left
and right with friends’ texting me scriptures, sweet messages, and telling me
how strong I was. Me…STRONG?!? But obviously that strength comes not of me, but
of the Lord.
Amazingly, even though we were
tired, we anxiously awaited to hear about Easton’s heart at the round table
discussion. Remember, no one really said anything during the scan, so we really
had no idea what we were about to hear, but we obviously knew we were still
going to hear that he has heart disease. And, once the cardiologist came back
in, she did confirm that Easton’s heart is so intricate and complex, and was by
far one of the MOST difficult hearts to image in her entire career as a
cardiologist. Stephen and I looked at each other and weren’t sure whether that
was a compliment or just another indication that our little boy is beyond
special and unique, which he is.
Easton’s original diagnosis
was Pulmonary Atresia, MAPCAs, and a ventricle complication. His new diagnosis is
just as severe and below I’ve typed out what the new diagnoses are.
First, Easton now has only a three-chamber heart (opposed to
the normal 4 chambers) because his right ventricle is no longer functioning. At
the original diagnosis, he had 4 working chambers, but with ventricles being
disproportioned in size, it was workable. Now, however, he has lost function in
his right ventricle, which is sad to hear and medically will no longer be of
use. It will always sit there, unless by some miracle, be unusable and
nonfunctioning. Therefore, it will put extra stress on his one working
ventricle. The only bright spot we can find is that if he had to only have one
functioning ventricle, we’re glad that it’s his left one because that is the
more muscular one and his left ventricle will now have to work over time to
process the blood flow. However, being a single ventricle baby is going to
require extensive surgery and work to be done and we will just have to wait and
pray for how he responds to surgery.
Second, what was originally
considered as Pulmonary Atresia, it appears (remember the heart is no larger
than a strawberry, so it can be hard to see the intricacies) that he has his
Pulmonary Artery but it is the more dominant artery (between that and the
Aorta). Because the pulmonary seems to be much larger,
the Aorta is now the artery that has been shorted in growth and is too small to
function on its own. Both arteries have important jobs and with his aorta being
too small to function, this will also require extensive surgery.
So, Easton doesn’t have MAPCAs
or pulmonary atresia but exchanged those two types of heart disease for another
two types. It’s not to say that the original diagnosis was in error, it was
just that the heart was so small that they could tell that he had heart disease
but the specificity of the heart disease was hard to diagnosis. The above
conditions do have LONG and COMPLEX names: Dextrocardia, Double Inlet Left
Ventricle, and Hypo-plastic Aorta.
Many of you are constantly
asking what we need, which is continued prayers, support, and encouragement as
we seek to obtain the best medical attention for our little boy. We were so
impressed with the care and expertise yesterday and would ask for you to join
us in praying through the logistics of delivering in Houston as well having it
be Easton’s main cardiology hospital (for surgeries). We do NOT have to move
there and Fort Worth can continue to be our home, but Easton will just need a
cardiologist here to see on a routine basis, pending he responds well to
surgery. I will have to relocate to Houston at 36 weeks and stay there until he
is born, and then we will be there until after his first surgery. All of this
is very new, so we would love for you to join us in praying over the logistics
of what and how life will look like for us, as Stephen continues to work and I anxiously
wait the arrival of sweet Easton.
Easton will need surgery
within the first 6 days of his life. It will be a major, complex, delicate, and
risky surgery because it is an in-cardiac procedure. We don’t want to make
speculations or even look at percentage rates for surgery rates of success/failure,
but we desperately cling to the truth that God is good and He knows and holds
our future, and Easton’s. On the way out of the door, the cardiologist said, “I
can see how excited you both are to have this baby,” and that’s the honest
truth. We are excited to be parents, to experience parenthood, and to take
peace in the fact that God handpicked us to be Easton’s parents. It’s difficult on days like yesterday
and even today to know that our sweet little boy is going to have complications
that are seem unfair for any infant/adult to have to endure.
We will go back to Houston in
3 weeks to do another follow up echocardiogram to make sure that his heart is
continuing to grow and “have flow” so that will be another big appointment day.
For those of you who consider yourselves our prayer warriors, you can
specifically be praying for that over the next three weeks—that his heart and
body would continue to grow and his heart would maintain the current state that
it is in or be improved.
So, obviously a lot went down
yesterday; we received more “news” and then good news about his other organs.
Thank you to all of you who have invested a piece of your life into Easton’s
journey. Stephen and I are honestly able to have strength that is beyond us through
the Lord but is tangible through the love, support, encouragement, and prayers
of so many.
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