The past 24 hours have been a whirlwind of emotions to say
the least. As we lay down to get some “sleep” we had an amazing conversation
about our greatest hopes and fears before we nodded off. Like I had told many,
just because we had done the heart surgery thing before, things were not easier
this time around. It was just different. Little did we know how different it
would be. With Lil’ Mis we were thrown into this heart defect world with a
lucky bout of pneumonia. It was God’s way of revealing to us why she couldn't gain
weight or keep up with her friends. He was ready to heal her in a miraculous
way. By all human accounts we had caught her problem too late. Her body had
already adapted to the functionality of her heart and there was no turning
back. She was in the beginning stages of heart failure and there was almost
nothing we could do to stop it. Again these are measurements in human standards
and not God’s. He had other plans. Through the use of an amazing medical team
he healed Lil Mis, but it was a rough road emotionally for us. It was filled
with set back after set back. Just because a Dr. may say that something is to
be expected or “oh that’s normal” doesn't make it any easier. She spent 9 days with
a breathing tube before she was allowed to wake up. She became so dependent on the
narcotic pain meds that we spent the next 2 months weaning her off of them. We spent
18 long days in the hospital. The funny thing is that this is nothing compared
to some of the other heart families we have grown to know and love.
About 4 or 5 days after Lil Mis’ surgery we found out that
Megan was pregnant with #2. #2 turned out to be Lil Man or “mini me” and most
folks compare him and I. We prayed and prayed for no heart condition and that
portion of our “please let him be a healthy child” prayer was answered. But
about a week after he was born we got a call saying that his newborn screening
came back abnormal. Long story short, he was diagnosed with MCADD, a 1in
17,000, genetic metabolic disorder in which his body fails to process and store
certain fats. He is unable to fast since he has no reserves for his body to run
off of. In recent years Dr.’s have started to attribute nearly half of all SIDS
deaths to metabolic disorders like his. The whole adage “never wake a sleeping
baby” can be fatal rather quickly for these kiddos. He was woken up to eat a
bottle every 4-6 hours for the first 3 years of his life and then graduated to
8 hour time periods until he was 5. Now he can go 12 hours! That all being
said, the miracle with Lil Man is that this is one of the mildest cases his
specialists have ever seen. His semiannual blood tests (where were monthly and
quarterly at certain points)are usually so good that if it weren’t for the fact
that we were all had our genetic profiles tested to confirm the disorder they
would argue if he even had it. Despite having to take a trip to the ER every
time he gets the flu so he can get guaranteed sustenance, he is a miracle. God
knew exactly what we could handle and he has done an amazing job using us to
show his miracle work.
We said after the first 2 medical kids that we were done. I’m
not going to lie, part of us was angry with God for unanswered prayers and for
all the earthly hassle He had put us through. This earthly perspective was
clearly fogged from an average of 4-6 hours of sleep per night and a temporary
woe is me attitude. The funny thing is that during this time we became more involved
in our local church community. He was working in our heart and surrounding us
by a whole host of families who eventually morphed into our family away from
family. Being a medical family is tough, but being a military medical family is
even tougher. Being geographically separated from parents and relatives who you
would normally rely on for help can be a devastating blow if you don’t have a
community of friends that you can rely on. As our roots grew deeper with our
community of friends so did our faith. Whether our friends went to the same
physical church as us or not, their constant outpouring of support fed us emotionally
and kept us going.
Something inside our hearts changed and we began to feel
that we wanted a 3rd crumb grabber running around the house. The
walls we put up were broken down and we put our faith in the Lord and knew that
he would provide no matter what. Within 2 months of practicing for baby #3, the
proverbial bun was in the oven. Because of our family history Mama was put
through the ringer of tests. We prayed and prayed for healthy. We knew the
statistical odds but we prayed on. Now I’m sure that there are many who think
that us bringing another child into this world was totally irresponsible, and that’s
fine. They are allowed to have their opinion. At my job we often joke with
military students who prefer to do things the hard way that it may be their
opinion that throwing their parachute and letting it drag them out the door
first before they exit aircraft is the best way to get down, but again that’s their
opinion while the rest of us know better. Instead we chose to trust in Christ
and that through Him all things were possible.
Lil Sis’ first ultrasound revealed our worst fears.
Congenital heart defect. Well, here we go again. But his time was different. In
the womb she was diagnosed with one condition and after birth that was corrected
to a less severe version of what Lil Mis had. I’ll admit that we didn’t fully
understand what that meant until now. We were told that while surgery was
required it wasn’t as urgent as Lil Mis’. From that day forward we circled her
in prayer constantly. We relied on our community profusely. One of our biggest
prayers was for God to use Lil Sis and us as a way for people to be drawn closer
to Christ by watching the miracles that were sure to happen. This was a bold
prayer based on our previous fears and frustrations. And I’ll admit that while
I am a fairly positive person the fear was often paralyzing this time around. It
forced me to rely on Christ and those he put next to me.
I know by now you are all saying just get to Lil Sis’ day
one update, so here is goes. Our prayers were answered and then some. Our story
was shared by one of our pastors during last week’s services. The talk was
partially on the power and strength of doing life together as a community. God
is using us to reach others in a powerful way. It has now been 24 hours since Mama
and I placed Lil Sis in the physical arms of the surgical staff. She was a rock
star! There was suspicion that her heart we trying to do some of the repair on its
own prior to surgery and that was confirmed. Dr.’s may say that they just
simply got it wrong in the previous ultra sounds but we know better. She is a
fighter. Surgery was expected to take 6-7 hours and lasted only 3½. Her
breathing tube was out within 9 hours. It came out at the exact time Lil Mis
was getting out of school for the day. I suspect that this will be a source of
contention in the years to come with Lil Sis bragging how she can do in 9 hours
what Lil Mis took 9 days to do but we’ll see. She has continued to progress
nicely. She is clearly in pain and as a tummy sleeper normally she is a bit uncomfortable
with having to sleep on her back. All she wants to do is eat and drink so we’ve
been chowing down on ice chips and Pedialyte. We hope to be moving to juice and
crackers soon but there is still a litter concern on whether she’s ready. Her
lungs are mostly clear with only minimal congestion which is to me expected.
Her heart is pumping great and her oxygen levels are good most of the time. I
say most of the time because she and I have been in a battle of wills to keep
her nasal cannula in. I allow her small victories every once in a while for
the most part I’m winning the battle for now. They are weaning her from most of her
medications since she has been fighting to do most of the work on her own. There
is hope that they may remove some of her chest tubes and IV’s today along with
her catheter. Hopefully that should make her more comfortable. Mama and I are
getting some sleep and thanks to the amazing Ronald McDonald house we are
eating well too. The Bigs are enjoying time with G-ma and G-pa and so far all
is quite on the home front.
I will end this dissertation here. The support we had
yesterday was so overwhelmingly amazing. We got to spend time with some of
those closest to us while we waited during surgery which was a huge blessing. When
the word can that she was done early there was cheering, hugging and tears of
joy. It will be a moment I will remember forever. There were folks wearing red
and praying like crazy to support her. We want to thank all of you for all that
you have done and all that you continue to do. It is you who has made this
possible for us. Once Mama wakes I’m sure I will be banned from blogging more for
lack of brevity but I just wanted to give you my perspective on the days event
and what got us here. We love you and continue to pray for Mia’s healing and
for you and your families as well. Have a great day and God bless.
Love,
Dad and the whole M Party of 5
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