Our pregnancy started off just like any other; Happiness
just poured from my husband & I when we found out that we were expecting
our second child on Christmas Eve. It was one of the best presents that we
could have been blessed with. We could hardly contain our excitement when
telling our families & friends. We had planned this pregnancy; knowing that
we wanted at least 1 if not 2 more children. Our first, Lila, was a perfectly
healthy, beautiful baby girl and we expected nothing more the second time
around.
The beginning of July, more specifically July 3rd,
was a day that I wish I could erase from my memory. We were sent to Children’s
Hospital in DC to have an ecogram on our son’s heart. We had no suspicions
whatsoever that something was or could be wrong. Man, were we completely
blindsided. The doctors sat us down and broke the horrible news to us; our son
was diagnosed with a severe, rare heart condition called Truncus Arteriosis. I
can’t explain the pain, the worry and the fear that immediately engulfed my
entire body. My stomach knotted up and I could feel my heart racing. I wanted
to run out of there as fast as I could but we just sat there, crying, trying to
understand what this exactly meant. I
couldn’t even look at my husband who was right by my side, I just held my belly
in my arms, and thinking is this really happening? Why is this happening to our
son? I wanted nothing more than to just wake up from a nightmare, but instead
we continued to live in one. Little did we know that our son, Brent, Jr., would
endure and have to overcome more than just a heart condition in his life
journey, much, much more.
It was August 13th, my husband & I had come
to terms with our son having a heart condition. We felt positive about it, we
knew that if our son was like either one of us he was strong, he was a fighter
and he would get through the open heart surgery, no problem. I was not “officially”
on bed rest but I was 3cm dilated for about a week and pretty much 95-100%
phased so the doctors wanted me to take it easy. The goal was to hold him in
there as long as possible, where he was safe. I’d been having contractions but
nothing that was alarming, nothing that brought me to know knees cussing by any
means. Our plan was to have our son in Arlington that way he could be closer to
DC minimizing his transport time to Children’s hospital after birth. We were
terrified to have him in Fredericksburg or even worse on the side of 95 trying
to get to Arlington, stuck in traffic. But that part worked out. At about
midnight on August 14th I decided that I might be having
contractions (like I said before, they weren’t that painful) and that we should
drive to Arlington and check to see if I was dilated anymore. We made it there
in record time! No traffic, just us and some crazy swerving tractor-trailers.
By the time we arrived and got checked in I was 5cm dilated and 100% phased.
They admitted me and I thought, awesome this is going to be a piece of cake!
I’m already half way dilated and not really feeling a thing! I got an epidural and
I was good to go. Our family came & my friend Chelsea. We all sat around
for a while, I dosed in & out. My time finally came to push, and all that
stuff went good pretty much by the book. When he came out he looked just like
our daughter, I’ll never forget that. The docs got him cleaned up and we all noticed
that he wasn’t breathing too well. They tried to intubate him but the tube came
back out. They tried to force it in and it wasn’t working. They knew something
was wrong so they took him away from us after holding him for two minutes. They
got me settled into another room; I cleaned up and was persistent in asking
when we could see our son. They finally let us down in the NICU. He looked
puffy and blue. My heart just sank, my nerves kicked in and I was in panic
mode. I immediately knew something was terribly wrong. His breathing was raspy
and hit seemed that every breath he took he was excruciating painful. There was
nothing I could do but kiss, rub and sing to help calm him down. I felt
completely helpless. The doctors said Children’s Hospital was on their way to
carry him by helicopter back to their facility. They came and picked him up,
the flight nurse said she’d call me once they landed and he was safely with the
doctors. She kept to her word; we got a called from her about 2 hours later
saying he had a safe flight and said the doctors would be calling us soon. Our
plan initially was to say at the Arlington hospital until morning. My doctor
said I had to wait at least 12 hours before he would discharge me, which would
have been 3:00 a.m. We were going to wait until the doctors rounded in the morning
and head out. Well I’ve learned many times in the past couple of months that
things don’t always go the way you planned.
We got a phone call from the doctors at Children’s Hospital.
I’ll never forget my husband’s face listening intently to the doctor on the
other line. He lost all color in his face and all I could see was fear. He put
him on speaker at the exact moment for me to hear “we are not sure your son is
going to make it, we need your permission to do anything we can to save his
life”. Not the words you want to hear when your baby was just born 5 hours ago
and you’re not even in the same hospital that he is. I hit the floor, my heart
seemed to weigh about a thousand pounds and my body couldn’t take the weight of
it. The tears flowed down my face, feeling like they were burning my skin off,
my heart raced, my entire body shook. I screamed almost in sync with my husband
“do whatever you need to, just save our son”. After peeling myself off the
floor and still crying hysterically I called for the nurse. I asked her what I
needed to do to leave the hospital. Of course my doctor was not going to sign
off on a discharge almost 6 hours after having birth, so I knew that wasn’t an
option. She brought me the paperwork and a bag full of supplies I would need. I
signed the paper and we ran out of the hospital. The drive to DC was the
longest drive of my life. We were both silent, not sure what to say. I mean
what do you say when you’re terrified to the point where you physically can’t
talk, there are no words. Finally when we were able to say something all was
said was that he has to be fine, we repeated it over and over again, as if somehow
that would make it true. We ran into Children’s hospital and they sent us to
the CICU (Cardiac Intensive Care Unit). The receptionist told us our son was
still in the operating room and a doctor would be up as soon as they could. We
tried to lay on the couches and tried to rest but there was no resting, our
minds were racing, thinking about every possible outcome. At this point it just
hit me that my legs and back were still numb from the epidural, but none of
that mattered. I didn’t care if they stayed numb for the rest of my life, as
long as my baby boy was okay. Finally a doctor came up and explained
everything.
When he was born they could not get the breathing tube down
his airway, the doctor tried to force it in but it kept coming out. None of the
doctors knew it at the time but our son was born with a very abnormally small
airway, which was why the tube wouldn’t go down. While forcing the tube down
the doctor tore a hole in his throat. With the hole, every breath he took was
letting air into his body. By the time he got to the Children’s Hospital he was
swollen up like a balloon. The doctors inserted chest tubes to release the air
trapped in his body. The doctor referred to him looking like Fat Bastard in the
movie Austin Powers, that’s how swollen and full of air he was. With the air beginning
to be released they turned their focus on his airway. They had a do an
emergency tracheotomy, to create a main airway for him. In the end this saved
his life. It’s very rare for a newborn to have a trache day one of their life,
but our son would soon prove to everyone that he was very special indeed. He
had 5 doctors sweating in the OR that night, a night I’m sure they would not
soon forget. Finally he was stable and we got to see him. The relief of seeing
him breathing, seeing him with my own eyes that he was alive and so beautiful
was a huge weight lifter. I felt like I could breathe again like I had been
holding my breath this entire time. We weren’t sure what this meant for his
heart surgery, but I got the feeling it may produce more complications. Over
the next few days, we met more people than I ever wanted to and learned A LOT.
ENT docs wanted to put a scope down his stoma site for the
trache and check out his small airway. It was a huge mystery to everyone as to
what was blocking the airway. His airway was so small they had trouble fitting
their 2.7mm scope down (which is the smallest they have). The results came back
with them saying he indeed had a very abnormally small airway and within the
airway there was a flap of what they thought to be cartilage. They also found
that he had a laceration most likely caused by the trauma at birth (with the
tube) and with the laceration his true and his false vocal cords were damaged.
They told us they couldn’t do anything to heal the laceration or the vocal cord
damage and that it would just have to heal itself in time. They also told us
for them to fix his small airway it would require complete reconstruction
surgery. They wouldn’t be able to do this surgery until after he successfully
healed from his heart surgery. So again, we will be patiently waiting for that.
With a trache he doesn’t make a sound which is the worst
thing about it. I want nothing more than to hear my child scream & cry as
weird as that sounds. There is a slight chance he may never talk, laugh or make
any sounds at all because of the vocal cord damage. Even when they do remove
the trache and do the reconstructive surgery he still may not be able to make a
noise. Only time will tell with that one. So mommies out there feel blessed to
hear your child cry and at 4am. Even though you’re exhausted and you just want
your baby to hush and go back to sleep, remember there are moms out there who
would die to hear their child cry, me being one of them. Never forget that
beautiful sound.
So at this point we have the trache and the heart that needs
repaired and a future airway reconstructive surgery planned. His heart surgery
was scheduled for the next Wednesday. He was doing so well; his heart was
hanging in there. With his specific heart condition, Truncus, the lungs
eventually get too much blood from the heart and begin to get saturated which
leaves the rest of the body with not enough blood to function. The doctors were
monitoring this but you can’t control everything. The Saturday before his scheduled
heart repair his entire body system crashed, kidneys, liver, stomach etc. In a
blink of an eye, we began living in our worst nightmare again. Everything
happened so quickly. He began to puke up a brown liquid which I later learned
was acid that your body produces, his body was trying to give us a sign like “hey
something’s not right, I’m not doing so well”. Well point taken. Before we knew
it he was in multi organ failure. We had already come so close to losing our
son once, and that feeling swept over me again. The next few days were horrifying.
He was on so much support he wasn’t doing anything himself. I can’t tell you
how many times my husband & I went to our car and just cried. Sobbing &
hysterically crying, letting it all out. This seemed to be the best way for us
to handle the type of emotions we were experiencing, feelings that no parent
should ever have to go through. In attempt to explain it; it’s a different type
of pain that directly affects your heart and soul, as if a piece of you was
missing and was being tortured with you being able to feel everything but you’re
not able to do anything about it which was extremely exhausting & painful.
I seriously wouldn’t be here today if it weren’t for my husband who is my rock,
my knight in shining armor. I know that sounds so cliché but it’s nothing short
of the truth. He’s the only other person who knows exactly what I’m going
through and how I feel. He accepts me at my weakest moment and lifts me up to
pull me through. Vice versa, I’d do the same for him too. At this point we
could see it in the doctors and nurses eyes, he wasn’t doing well. The doctors
sat us down and explained how worried they were about him, how serious his
condition was. He was by far the sickest kid in the CICU. We knew and
understood everything that was happening and came to terms with accepting any
fate but we knew in our hearts that he would make it through. I’ve never been
the praying type but I prayed. I prayed to everyone and everything. I prayed so
hard, begging and pleading for our son to pull through this. He had to; there
wasn’t another choice that we were willing to accept.
His heart surgeon told us that something needed to be done
to help his heart out temporarily because his complete surgery was out of the
question right now. He decided to cut open his chest and place PA bands on his
arteries to slow the blood flow to his lungs from his heart. He explained there
was a risk of injuring the arteries with the bands but it was much less of a
risk than the odds of him making it through his heart surgery (which were slim
to none). The heart lung bypass machine is not one to take a chance with when you’re
playing with such short odds. We respect the heart surgeon and we will agree
with anything he thinks is right. Who are we to question someone when I couldn’t
tell you the first thing about a heart a few days ago and he fixes them and
saves lives for a living! Once they
opened his chest they could not get it closed because of his fluid overload
state. Since he was in kidney failure he retained all the fluid, so the doctors
decided to leave his chest open and to put in an emergency peritoneal dialysis
catheter and start dialysis immediately. It was another surgery our son had to
go through and thank goodness we had the director of the surgery department
come put it in. Inserting the catheter was risky because of his state but there
was nothing else that could be done, this was it our only chance. With his
swollenness from being fluid overloaded it was restricting the blood flow to
his organs and was putting a lot of pressure on his lungs & heart. He was placed
on 3 different blood pressure meds, a pacer, a ventilator and was kept heavily
sedated for days. With his open chest you could see his heart beating through
the window, I’d never seen anything like it. The infection risk was high with
the trache, open chest & PD catheter but all of it was necessary. His chest
was open for 12 days, which was unheard of in the CICU. When they finally closed
it they had no struggle whatsoever which was a huge relief.
Now on top of all the near death experience’s we’ve
encountered, something just as frightening was discovered as well. We knew that
he had two small level 2 brain bleeds that the doctors said they were old, probably
occurred from birth and it was nothing to really worry about. After his multi
organ failure the neurologist unfortunately found a new level 4 brain bleed
that was not just bleeding in the ventricles like the previous two but the
bleeding went into the brain tissue which causes scarring. Level 4 is the
largest brain bleed you can have and it does cause some damage. The damage done
that we could tell was that our son was having seizures, they were lasting
about 10 seconds a piece and there were many of them, back to back. Anything
dealing with my son’s brain absolutely terrifies me. I can handle a heart
issue, I can handle tracheostomy but the brain is a sensitive spot for me. It’s
the motherboard of how your body functions. Luckily though, I’m told that
infants can reconstruct their brains that no part is exactly set in stone yet.
So, if part of his brain was damaged from the brain bleed he can actually make
new connection and re-route it. I’m holding on like hell to that fact, and I
know, I can feel when I look into his eyes he knows it me; he recognizes the
sound of my husband and daughter when they talk to him. He’s on medicine to
help with the seizures and only time will tell with how it affects him. They
will do a brain MRI when he’s healthier but currently he’s very awake and aware
and does good job at responding to stimulation which is a good sign.
I know this is a lot to take in, imagine having to live
through it all. There are just a few more things. So with his heart condition
there is a syndrome that goes hand in hand with it, it’s called DiGeorge
syndrome. Our son was diagnosed with it which didn’t come as a surprise really,
I kind of expected it. It affects his developmental state as he grows and it
also affects him from the throat to the lower chest area. I’m not going to go
into details about all that could result from this syndrome, because there are
many possibilities and some children don’t even show effects. It just may take
him longer to crawl or walk. He may need extra help with problem solving in
school because it may not come as easily to him, or it could as far as affecting
his swallowing or speech. We’ll see as time goes, and either way nothing will
change the way we look at him. The doctors also think he may have a blood
condition that’s in the same spectrum as DiGeorge. His platelet level is very
low which means they have to keep giving him platelet transfusions which are
what helps the blood clot. As to what this means for him future wise; he’ll
just bruise easier and bleed a bit more than a regular child would but it won’t
hold up his heart surgery.
Okay, so the plan is; get the fluid off as quickly as he can
tolerate. As of today the dialysis has been running for almost 3 weeks, and the
kidney doctors want to come down on the concentration of the fluid and cut back
the time from 24 to 18 hours and see how he handles himself. He’s basically
back to normal size, which is great to see. The doctors wanted him off of all
blood pressure medicines, which as of yesterday he’s off of all three! He’s
about half way down on his vent settings which they’re taking down slowly. He
just started his feeds again of breast milk yesterday. So far he’s handling it
well. We are taking baby steps, gotta go his speed. He’s definitely moving
forward, getting closer to where they want him to be for his heart surgery. My prediction
if he keeps at this pace of improvement that he’ll have his heart surgery in
about 2 weeks, the beginning of October. Fingers crossed!!
I think I’ve covered all the basis. It’s lot to read and
process. Some people think “oh my gosh, how are you guys getting through this?”
And you know what I tell them, faith. I have faith in my son. He will dodge
anything you throw at him, he is a fighter. He is going to live this
beautiful life and he’ll know firsthand for what it means never take anything
for granted. He will do something amazing with the life that he is given which
he’s already done in more ways than one. He is the absolute strongest person I’ve
ever met (grown-ups included). He is the true definition of a miracle.
It felt good to have
him home, in his own room, seeing Lila being able to lay and cuddle with him.
But there was always that thought in the back of our minds that this wasn’t for
long- he still has a very sick heart. It
was not a comforting thought thinking what if something happened, would we have
time to get to his docs?! It was a sickening feeling to be exact. The second
Saturday we were home, it’s hard to explain but I had a Momma feeling-
something was not right. His oxygen saturation's were fluctuating way too much.
I called his Cardiology doctor and he said Brent needed to get up there. We had
no choice but to bring him to Mary Wash Hospital first. They arranged a
helicopter to pick Brent up and bring him to Children’s. I was invited to ride
with them- it was a beautiful ride. It was at night and the whole city was lit
up! Wish it was under different circumstances to take my first helicopter ride
but I was grateful I got to be with him. He looked at me for half the time-
making sure I wasn’t going anywhere. He looked like a baby Eskimo all bundled
up. He fell asleep for the second half- there was no match against those
vibrations! When we got to Children’s
everyone was happy but not happy to see us. It was a mutual feeling. 
At first everyone was saying that he had a virus but after
watching him for a few days his saturation's were not getting better. The
doctors decided that he needed a cardiac cauterization done to see how his
heart was holding up with his temporary fix. After discussing it with his
surgeon they decided that the cath wasn’t the best choice for Brent because of
his already known kidney failure. They didn’t want to risk his kidney’s taking
a hit from the dye they use in the cath because if they did have to do his
surgery they want his kidneys as healthy as they can be for the bypass machine.
They settled for a cardiac MRI. They got him all prepped for the MRI, took him
down for about 4-5ish hours. We waited patiently for 24 hours for the results
of the MRI. They found out that Brent already outgrew this temporary PA banding
fix! Wow…it totally shocked us because we were preparing ourselves to go back
home and wait another month or two. We had to switch gears to surgery mode. I
dreaded this day for so long. Not the fact that he was getting his heart fix, I
was so happy about that, it’s just such a serious surgery and with his history
it scared the life out of us. We were just given the chance to enjoy him, I couldn’t handle
it if something bad happened.
We
got a visit from the Immunologist at Children’s that same day (Monday).
They had recently done a test to see how Brent’s T-cells (which are an
essential
part of your immune system) were doing. It crushes my mind, body &
soul to
have to say that our sweet boy has encountered another mountain to
climb. He is
the extremely rare 1% of children with DiGeorge syndrome who completely
lack
T-cells (that fight infections). He has what they call "complete
DiGeorge". My heart hurts so much to think that our
beautiful baby boy is so sick.You'd never know it...he's so perfect you
guys...I want more than
anything for him to be healthy. Brent needs a Thymus Transplant as soon
as
possible. They're available on a research basis at Duke University in
North
Carolina and the disease he has was completely fetal until this
transplant. We
are currently waiting to hear back from Duke to see if they’ll accept
him as a candidate
for this. I pray with every ounce of my being that he will make it
through
this.
I feel like we take a huge step forward and 10 steps back. Everything
about this journey has tested our faith, tested our faith in everything. I want
to be able to accept what our son has to go through so I need an answer to why
this is happening to him. The only thing that I can come up with his that
Brent’s purpose in life is to teach. Teach all of these doctors and help them
learn; help them save other children’s lives in the future. I hold on like hell
to the fact he wouldn’t have been given this life if he wasn’t strong enough to
live it. I know our son will move mountains one day. He will make it through
all this, he has to.
