When I moved to Dallas I
had no friends at all until Mighty Z’s doctor told me about another child with
her disease. I quickly went home and searched on Facebook for this family never
knowing that what I was about to find was a best friend and kindred spirit.
Brandy and I have together through surgeries, sicknesses, and near death. We have
fallen out of chairs in the PICU in tears of laughter and held each other while
tears of pain and sorrow have run down our cheeks. This is a story of 3 mighty
little brothers, and how they fight not to just to survive but to have a life
worth living. This is a long story but when you have two babies on life support machines there is a lot to tell.
Sometimes I truly wonder
this. It’s been almost eight years now since my first precious baby boy,
Landon, was born. Some things I remember so clearly and so much is a blur. My
life started early on what I thought was a great path. Graduated high school 2
years early, got into a University with great grades and high standards. I
wanted to be in the medical field, always did. It always had my attention in
some way or another. I decided to Biological Sciences in Pre-Medicine. I just
knew having started college at 16 I had a huge jump start on everyone else and
towards my goals. Well college went good, had fun, goofed off a little, could
have done better, but was almost done and had a lot of family stuff going on,
so I decided to take a semester off. I helped with the family businesses
in the meantime. Well at age 20 I find out my precious little, Landon, is on
his way to embrace the world. Everything went as planned, great pregnancy, and
no reason to think otherwise…until 37 weeks. Lying on the couch watching a
movie and he was kicking nonstop. It was fine for awhile until it started to
make me nauseous and clearly concerned. I called my doctor and she asked had I
had a lot of sugar? NO, caffeine? NO, so she said give it 30 minutes if he
doesn’t stop then meet her in the ER. Well 30 minutes went by and he was still
full throttle, and then suddenly just stopped, so off to the ER I go, only to
be admitted to be “watched” overnight. He was fine, really had no answers so I
was discharged but only to return to the doctor’s office every few days until
39 weeks where my doctor called in a Perinatologist to do this detailed
ultrasound. By the way my doctors deemed it was necessary and safe timing to do
a scheduled c-section, so I agreed. UNTIL my ultrasound with the Perinatologist
showed Landon drinking amniotic fluid, sucking his thumb, belly was full and he
was looking great…just perfect! Of course I was glad but also hated to hear the
doctors words, “Well, Brandy he looks great. I see no medical reason to do a
c-section today so I’m cancelling it!” I returned home with my bags
only to be called back into my doctors office the next day to hear them say,
“Even though the Perinatologist did not think it was necessary, we feel that
the babys heart rate keeps dropping and that he will not tolerate a typical
delivery, and we still think a scheduled c-section will be better than an
emergency one after hours in labor.” Clearly, I agreed! So I ran home to get my
bags to return that night at our local hospital around 4pm with a 6pm scheduled
c-section. Super excited I might add! All our family was there. I got an
epidural bedside and about broke the poor nurse’s hands squeezing them so
tight. Not sure if it was so much the needle or just the fact they had me
leaned so far forward squishing my huge belly! Off to the operating room I
went. At 6:28pm my little Landon graced us with his presence! 7 lbs, 3.6
ounces, with tons of long black hair. All went well and that moment every
mother awaits was finally here…or was it? I remember laying there, everyone
telling me everything’s going great, and shortly after, the tones start to
change. I’m still behind the sheet, can’t see anything, just patiently waiting
to hear that little cry! To this day I can relive that moment only in my head.
I can see the doctor quickly lift him up for me to see, I can see the nurse
take him quickly across the room. I asked, “Is everything ok”? The response I
got was, “Yes, everything’s okay, he’s just having a little trouble breathing”.
Well, moments go by and no one brings me my baby boy to hold, to kiss, to
smell. No big beautiful eyes to sink deep into…nothing. Soon after, a nurse
passes by with an incubator and ever so slightly stops for me to catch a
glimpse of my angel wrapped in blankets and a hat, and off they went to the
NICU. I was in tears. I never heard that cry, never felt the warmth of his
fresh new skin. I got nothing but a glimpse. Needless to say I start asking
questions but only to receive short responses, more concerned about me staying
calm
and getting sewn up so I could return to my room and await someone
to come tell me the status of my baby.
I return to my
room and family starts swarming in. I heard worried voices, and tons of
questions. Everyone hangs around for quite awhile, and still no word on my
baby. Well, 11pm comes around, hours now, and we are still getting the response
that the doctor was in an emergency and would be in to explain as soon as
possible. My medicine is long worn off by now and I’m refusing more because the
last thing I want is to be knocked out when they come to tell me did my baby
make or did he not! Right about midnight, it is demanded that
someone come tell us what in the world is going on. Finally a nurse agrees to
let my mom, and Landon’s father back to see him. My mom was able to take a few
pictures of my gorgeous little man lying there in that bed. Though he was
covered in tape and gauze for IV’s he had his little diaper on and was getting
oxygen via a nasal cannula. The visit was a short 5 minutes and they were asked
to leave, that he could not handle stimulation. They return to show me the
pictures of this beautiful, perfect, flawless skin, 10 fingers, 10 toes, long
dark hair, and big brown eyed baby boy. I finally accept the fact that he’s ok,
just had a rough start, and I accept my much needed pain medicine and fell
asleep.
own opinions of his appearance if someone would just let me SEE
HIM! Off we go into the NICU, and there he lies, but now there are tubes forced
down his throat held to his face with tape and plastic bars. I’m again confused
and call the nurse over to ask what in the world is this on my child’s face???
She gives me the spill that they had to keep resuscitating him through the
night to the point he needed to be intubated and placed on a ventilator with
oxygen, yet never kindly let his parents know! Our visit was short, yet another
5 minutes and the nurse claimed it was too much stimulation. So we leave and
head back to my room only to turn the corner of the hallway and find our
parents and family outside my room in tears. Extremely confused now, my family
begins to tell me the hospital called them and presented all of them with the
same papers. Now I remind you most of them have not even seen Landon yet!
Much
time passes and they decided he needs to be seen by a Neurologist who would not
be coming to that hospital until December 5th, so they ask my
permission to load Landon into an ambulance and take him to a more specialized
hospital in Baton Rouge, Louisiana. Of course I say yes as I don’t want to wait
for December 5th. I start asking the nurse about removing my staples
for my incision, (Landon was 3 days old) and she tells me ohh no Landon was
being transferred, but I was not being discharged yet! Well, if you know me
well, then I’m sure I don’t have to explain to you how this went down!
Needless to say I made it
clear she take them out or I will. Minutes later she came and removed my
staples and on my merry way I went. I think we followed the ambulance to the
next hospital. I was in a lot of pain, but tried so hard to suck it up and stay
on top of the mystery about my son. As soon as he arrived at the 2nd NICU
it was noticed some line that was in his belly button was in the wrong place
and could have caused internal harm. Next it was noticed he was 3 days old and
had yet to pass meconium (infant poop). Immediately they start messing with my
poor fragile baby, trying enemas, etc only to learn it did nothing for him. He
was sent back for some colon biopsies that returned he had no mature ganglion
cells in the lower end of his large intestines’ and colon so they placed a
colostomy on the lower left side of his tiny little belly. Surgery 1 was
underway and out he came with this cherry looking thing on top his belly that
was actually his insides sewn to the outside of his belly so that a bag could
be glued to his little belly for him to poop in. So as time goes by this place
becomes home to Landon and the Holiday Inn down the street becomes home to me. Every
day I spent as much time next to his little bed as they allowed in hopes any
sort of bonding that could emerge, would. Those moments were so hard. I
replayed this in my head a million times at what might have gone wrong. Did I
do
something? The doctors at delivery? Yet nothing surfaced. I spent
endless hours with my face smashed again the thick clear plastic sides of an
incubator, not allowed to even touch him as the nurses made sure they watched
like hawks so they could run up and inform me my son could not handle the
stimulation. I longed to reach over and just grab him, hug him so tight, and
ignore them, but I also longed for them to figure out why he was so sick, why
everything was going so wrong so I could take him home. Never did I imagine
what was in store for our lives ahead of us. Never did I know that I’d not be
allowed to hold him for weeks, and when I finally could it would be with the
guidance of many people standing around me holding breathing tubes, wires,
circuits, IV lines and acting like I’d never held a baby in my life.
So much for the snuggling, cuddling and squeezing tight that all mothers long
for. I felt it was all ripped away from me, totally out of my control, and
nothing in the world I could do but play along. Time goes by and though I
cannot remember exact dates or timeframes of course it felt like forever. It
was soon deemed that Landon definitely had Hirschsprung’s Disease and that his
gut still was not functioning properly to potty so he went in for surgery #2
and the colostomy was then changed to an ileostomy which was higher up in his
intestines at the ileum. Same thing, a little cherry red stoma was placed on his
belly for him to poop from into a bag stuck to his skin, that the liquid stool
was constantly emptied from and the bag itself was frequently changed due to
coming unstuck and leaking a mess everywhere or just time to change the bag in
general. Either way it sucked. You had to rip off the taped and waxy parts of
the bags leaving his skin red, irritated and rashy, only to restick another bag
on top the irritated skin. Sure there were pastes, powders, creams,
etc but after awhile none of them helped his little skin. Surgery 2 went
well and again it was confirmed Hirschsprung’s Disease but this time more in
depth that he had full colonic Hirschsprung’s meaning most of his colon was
dead, or lacking the needed cells to function properly. I was told then that some
years into the future another surgery could be performed after he grew a bit to
see if the bag would be a permanent thing for him or not. This was devastating
enough to see him only days, weeks old, already had 2 surgeries, scars all over
his little belly, tubes in his mouth, etc etc. This was not what he asked for!
Now,
I’m a pretty headstrong kind of person. I love to learn, and will do
anything when it comes to my child, so I had my bouts with breakdowns and tear
shedding in the silence and tried to keep my head held high for Landon and
whatever his future may have held. I made the nurses teach me everything as it
happened and I grew fonder of many of them as they did of me. I spent every
waking hour I could by his side, secluded myself from the outside world. The
only people that saw me were the ones who took the time to come to the hospital
and come visit. I’d spend time with them at his bedside explaining what was
what and what was going on, etc. This became such an exhausting thing for me
that I had to get my close family to do emails and/or texts for me because
though I was so grateful for their visits and concerns, repeating myself
everyday just seemed to drain me more.
I
had plans to breastfeed Landon but of course he could not eat so I tried the
pumping ordeal but it quickly started to dry up because I never got that
bonding time, that skin to skin time that mommy’s and babies are supposed to
get. By this time Landon had a tube up his nose that fed down to his belly to
feed him. I pumped what I could and they stored it at the hospital and gave it
to him until my supply ran out. We soon grew very close to two nurses in the
NICU that became his two primary’s and one day one of them had the idea to let
me hold him skin to skin! Oh my gosh was I excited, but it was a task! She laid
his little warm body against my chest and I think I just melted. This being
only the second time I got to hold him, I just didn’t want to let go. I laid my
cheek upon his hairy little head and just closed my eyes. I can remember that
moment like it was yesterday. He cuddled right up and fell right asleep,
peaceful as could be. Of course it didn’t last forever and back to his bed he
had to go. The next few weeks entailed surgery to place a feeding tube in my
little man’s belly so the one down his throat could be removed and also a
tracheostomy. I don’t remember perfect timing but one was before Christmas 2005
and the other was right after the New Year. In the tracheostomy surgery he also
had a Broviac placed (More permanent IV that fed to his heart) and his appendix
removed. The Broviac placement came into play when I had arrived one
day only to find the side of my babys head shaved to the scalp! I absolutely had
a cow, only to be told his IV had blew AGAIN (this became a frequent routine)
and in searching for another they had to result to the head. They had gotten
one in his head but it too was short lived. At least they saved me his little
shaved hairs in a baggy. Yes of course I still have it.
With
surgeries 1-4 completed, trach, broviac, g-tube, and colostomy bag in place
things slowed down a bit. Time went on, doctors continued to “guess” a
diagnosis for Lan only to result in a big Negative! By this time I’m being told
he’s deaf and blind. Clearly he smiles at me, is active, and full of love for
life! I was quite frustrated by the claims of deafness and blindness and though
I knew he was neither, arguing with those people was like talking to a brick
wall. Remember I’m a first time mommy and a 20 year old. Of course they earned
much respect for me and thought highly of my mothering skills but they also
thought I was a mommy in denial. I wasn’t though. I just got to where the
doctors told me so much in our weekly meetings and their guesswork of sitting
at a computer with me googling symptom’s just trying to stick him with a
diagnosis…soon got old to me. I didn’t care anymore what he had. He was my
baby. He was perfect in my eyes and I would deal with whatever it was that he
had and needed. I continued on this path of “teach me everything” right after
each surgery. I would tell the nurses okay teach me now let me do it from now
on. And they did. His NICU room soon became more like a nursery. They let me
bring in a little Christmas tree, his gifts, a small dresser so we could start
dressing him as wounds healed and time passed by he became more stable. He
underwent 7 major surgeries while there for his 6 month stay. I brought in a
little stereo and made a rule that music whether it be playtime or lullabies,
music was to be played 24 hours a day. One nurse in particular thought that was
ridiculous since he was deaf! We argued about it and she threw out there that
he felt the vibrations of the door opening when I walked in that’s why he
turned his head towards me. Whatever lady! Some doctors still came in and would
pat my back asking me if I really wanted to put him through all of this, since
after FINALLY diagnosing him at age 3 months, it was deemed he had the
unforgiving Ondine’s Curse! Today it’s called more Haddad’s Syndrome
(Congenital Central Hypoventilation Syndrome & Hirschsprung’s Disease)
Needless to say I had that doctor banned from his room as I was on a mission,
no negative energy in his room! If he had the will to fight, then who was I to
give up on him! Never!
When time to go home rolled around it was postponed many times…he
would catch a hospital bug or no nurses to help me at home and the doctor hated
to send me home with no help, etc etc. Finally the day came and he was almost 6
months old. It was a crazy day to say the least but we adjusted well. His
nursery became nothing more than an adorable room we setup to only become a
storage for medical supplies and equipment. He slept in a baby bed in my room
so that I was always right next to him. Moving him during the first few months
was very tense and scary. He would desaturate while trying to move his body and
hold all his wires, making sure his trach never pulled out, etc. Time grew on,
we built a house closer to the city as we had currently lived in the country
next to my father and stepmother which was a huge help but way to far from a
911 calls response. Ambulances took about 30 minutes to get to us yet the
helicopter was a lot less time. Landon continued to grow into this amazing
little boy, who was bright, happy, and hilarious. He was always and still is
the most loveable little mama’s boy.
Landon is now 7 years old. In 2008 he was 3 years old and I took
him on a long trip to Chicago to meet one of his diseases top specialists to
see was he a candidate for diaphragmatic pacers. A way to keep breathing for
him but without a ventilator. It was freedom for him! He was deemed a candidate
but many years would pass of insurance battles to pay for the very expensive
surgery, that to them was a luxury item. Yep, got to love how that implanted
piece of metal that shocks your nervous system to send a message to your brain
to say, hey “take a breath” was equal to asking those people for a yacht!
As time passed and Landon
grew older and stronger he had his share of life threatening emergencies and
many that almost took him from me. He still to this day battles dehydration on
an everyday basis. Hirschsprung’s disease, I think, has almost taken his life
more than his battles with anything else. Don’t get me wrong illnesses and
viruses used to kick his butt but through the year’s he’s grown much stronger
as mommy has grown wiser! Doctors have made many mistakes, causing emergency
corrective surgeries and so on leaving him having had 14 major surgeries to
date. I must say he bounces back with a vengeance every single time! His daily
life
is much of that of any other 7 year old boy, though lots of
medical and caregiver assistance is being done every second on the backend.
Landon learned to walk a little after age 2 and didn’t stop there! He learned
to eat by mouth and was able to have his feeding tube removed the summer of
2008. He was able to have 2 major surgeries in the later parts of 2007 to
complete a “pull-through” surgery that consisted of going in and removing the
dead compacted parts of his colon, stretching the short piece that worked, that
he had left (only half an inch was left or the bag was permanent) and
connecting it to his rectum, creating him a j-pouch…and voila! No more ostomy
bag on his belly! It wasn’t that simple actually. It took many surgeries and
months of breaks in between, a hypovolemic shock episode from dehydration from
a leaking feeding tube that was his closest face with death, and battles of
water intoxication, with many, many months in intensive care before the
pull-through surgery was complete. Landon’s stool is still like water to this
day and he still battles absorption of fluids, minerals and nutrients that he
needs to thrive. We’ve been home with PICC Lines (IVs to his heart) on TPN
(Total Perinatal Nutrition) and Lipids (fats) to aid in his nutrition only to
pick him up from rock bottom episodes, but they too cause problems. It’s
without a doubt, a never ending battle, but I’d have it no other way, but for
him to have been healthy, for him... not for me. He is who he is because of
what he’s been through. I cry many tears writing this as it brings back such
awful memories I try so hard to put behind me. No parent should ever be asked
to let their baby go because it will be better for them. No parent should ever
have to live out of a hotel, paying money they don’t have, or sleep endless
nights in a hospital chair because they are scared to death that after they
leave, a stranger will be in their babies care. Maybe that person won’t put his
circuit in the right position and it will pull at his trach causing pain or
damage, maybe they won’t change his diaper soon enough causing a rash, maybe
they won’t pay close attention that the IV has blown and medicine will pump
into your baby’s tiny little hands literally burning the skin. Maybe it’s
something simple like they forgot to turn on his lullabies or cover him with
the softest side of his blanket, or they won’t pay attention to him when he’s
crying because he can’t actually vocalize out loud over his trach, you have to
be watching his face to see his cries. Maybe they will ignore his tears because
he’s never been able to shed a real liquid tear from his little eyes. His
partial facial paralysis will be forgotten when learning how to communicate
with him, learning what’s a cry and what’s a smile. These are ALL things that
haunt a parent of a child with these types of medical needs. Those
so called nights of sleep are nothing but opposite of that. They are close your
eyes but keep peeking and listening very, very closely never missing a single
beat. Over the years I have learned every beep, ding, and alarm on every
machine that has come and gone through our home. People freak out when
something alarms and I don’t hurry over anymore. Sometimes it’s funny because I
can just say, “Oh its fine he just sneezed, coughed, talked, or laughed!”
Well through it all the one thing I CAN honestly say is that I just took Landon and ran with what we were given. I honestly never asked, “Why me?” “Why him?”….I just didn’t care why. He might not have seemed like a child worth saving to many people, but to me he was my angel. He made me a better person; he showed me what the true meaning to life was. I was a material girl, loved nice things and had them. But with Landon that was out the window. It wasn’t about me anymore, not even for a second. You get over “looks” really quick when you go places with your beloved baby boy, dressed cute as a button, hair all fixed handsome, and yet cloth ties are around his neck, holding a tube into his airways and bigger tubing from his neck to bulky, loud machines that beep every two seconds. People literally making comments that you have your kid on a leash! Yes, ignorance at its best! Or a suction machine that seriously gets the attention of the whole room when you fire it up in the middle of a restaurant, but hey my kids
choking and needs me to clear his airway, and now! Or an ostomy
bag that’s full of poop and just busted right through that adorable outfit that
no one has a clue what’s underneath. You learn to do it all, fast, with grace,
and most importantly with a smile. My theory was always two things: “If you
give these babies something to fight for, they will” and “If he sees the pain
and stress in my eyes, he will think it’s his fault, and it’s not, so keep your
chin up and a smile on your face…and just keep chuggin’!”
So time moves on in our lives, where we realize the path we are
heading down may not have been a long term pathway. Needless to say Landon’s
father and I divorced and went our separate ways. He was a good father when he
was there but that faded after the divorce, no matter how many times I
reiterated “we” divorce each other, not our child. Anyhow, another saying I
hold very dear to my heart is “when one door closes, a bigger, better one may
open.” And I truly believe this because in 2009 when Landon was just 3 years
old we met an amazing man. Though Lan and I had spent much time alone, we were
doing good, and happy. I met this person through family friends and my father
who all had such great things to say about him, but I didn’t care. I was
content with me and Lan, haha.
Sure enough it’s a setup, and the guy is actually a great guy.
Well, things move forward rather quickly and he’s just amazing with Landon.
From the moment he met Lan, not a single part of Landon’s life, history,
medical, anything…were a burden to Mark. Mark had no children, but wanted many!
He and Landon fell in love with each other, as the only full time men in
Landon’s life were my father and little brother, whom Landon absolutely adores.
A male figure in Lan’s life I felt was a big deal. He was always around mommy,
grandmas, and female nurses. Seldom did he get social time with other children
because he was too fragile with sicknesses. Mark did everything with Landon,
wanting to learn everything from day one. He knew Landon’s father existed and
never once tried to take his place, but he loved Landon dearly and would go any
lengths to provide for him.
In the meantime, I had long been working on a move to another state that was willing to do Landon’s pacer surgery, even before Mark came along, so I let it be known from day one that I would soon be moving to give Landon a once in a lifetime opportunity to be free from his tubes and ventilator. Free to run from room to room on his own, free to go get his own toys, free to ride a bicycle, and everything else he long for, for years. Mark said we would cross that path when we got there and so we left it there! Time went on and Landon was granted the opportunity for his pacer surgery. We uprooted and made the move from Louisiana to Texas which may not seem far but we had to rent the largest Uhaul possible, still rent another and a trailer to pull our vehicles. No there’s no way I could ever make you understand what this move was like with
ALL of Landon’s supplies
and equipment. Let’s just say it was a task in itself. We made it to
Texas, spent a couple months at my mother’s while Mark searched for a new job
and we searched for a house that would accommodate Landon’s needs. Mark landed
a great job and we found a beautiful house not long after.
We had, had many
discussions about children but needless to say I had no plans to have any more
children, although all the genetic testing was done after Landon’s diagnosis
and all deemed that Landon’s was actually totally spontaneous. We were not
genetic carriers in any way. So the likely hood of Mark and I having a child
with Landon’s disease was pretty nonexistent. Low and behold we became pregnant
with another beautiful little baby boy who graced us with his presence on
August 6, 2010. Another scheduled c-section, and perfect pregnancy, yet doctors
were prepared for the worst! Cullen Jacob Costello was a whopping 10lb, blonde
haired, crystal blue eyed, perfectly healthy baby boy! And he let out an
immediate scream that let you know he was here! He was handed right into my
arms, lying on my chest in the operating room and my whole world just came
together. I had a wonderful man next to me, and a super excited big brother
Landon waiting outside for “his baby” as he called him, and the gift of mommy
baby bonding. Everything was great; surgery went well, as did recovery, so home
we went within days. Things were amazing. Landon was a fantastic big brother
and Cullen was the best baby ever. I remember Cullen asleep in a little crib
that goes in bed with mom and dad, and I could have just stared at him for
hours. I cried and cried and cried, with joy of course, but it hit me right
then... that why couldn’t Landon have been given the same opportunity? Though
Landon taught me so much about love, life, motherhood, and about myself, Cullen
had something different to offer. I was able to feed Cullen with a bottle not a
tube in his belly, I could change a diaper not an ostomy bag on his belly, I
could breastfeed him and hold him close to me, I could dress him in all those
cute baby clothes, all the things I had longed for with Landon.
Well time went on, actually not much time…and we found out we were pregnant again! We hoped it was our girl, only to be blessed with another beautiful baby boy on July 27, 2011! Great
pregnancy again until
the end I started having some fainting spells behind the wheel... yeah! So I
was pretty much put on bed rest, and banned from driving. Marks mom came down
from Rhode Island for Cullen’s birth as she planned to do again for our newest
addition, Carter Wyatt Costello. But she ended up coming down a little earlier
than expected in fear of an early labor. She was a huge help and glad she came
early because I lost all my amniotic fluid at 36 weeks and had an unplanned
quick c-section to deliver Carter whom was a scrawny, wrinkly, little thing but
weighed in at 6 lbs 14 ounces. He seemed perfect just jaundice and a preemie
with underdeveloped lungs that needed some growing time in the NICU. Boy did
this bring back bad memories and fears. Having to be discharged without him was
really hard for me. Mark was by my side but I really felt, it just didn’t hit
home as hard to him, not having been through it with Landon like I had. He was
very supportive, and is a great father and husband so we just made our daily
trips to the NICU to feed him and nurture him. It was a short 10 days later and
he was allowed to come home with what we planned to be a big surprise because
it was actually Cullen’s first birthday! The boys were thrilled by their baby
brother. Our family seemed complete. We had each other and our 3 boys, granted
Cully and Carter were healthy, Landon kept us extremely busy so we had decided
early on in the pregnancy with Carter that he would be our last little one, and
I had my tubes tied in my c-section. We felt so blessed that Landon was growing
strong, he finally got his pacers after years of waiting, we had been blessed
with 2 new healthy little boys…we just felt complete.
So time goes on and all seems great until Carter hits about 2.5 months old. Very quickly his head becomes floppy while burping, and shortly after we notice his legs stopped moving. I was lying on the couch with him one day only to find his legs “frogged” out. I immediately got him to the doctor where she sent us straight to a Neurologist. By the time we got there Carter had stopped moving his legs and arms! Immediately she mentions SMA. Now, I’m pretty in tuned to the medical world from Landon and all, but SMA??? Never heard of it! She just sent us to a lab and said she wanted to check his thyroid levels, etc. and then check for SMA. So we go home and knowing me I Google SMA. Only to find the most horrifying results of my life. SMA stands for Spinal MuscularAtrophy. It is a recessively inhibited neuromuscular disease characterized by degeneration of spinal cord motor neurons, resulting in progressive
muscular atrophy and
weakness to the point of death. There is currently no treatment and/or cure for
this disorder. It affects every part of the body robbing you of the ability to
not only eat, drink, swallow, but breathe, potty, and move every inch of your
body. Sensation is spared and so is the mind. Leaving you with a brilliant mind
trapped in a body that cannot express itself in anyway other than to move your
eyes. WE WERE DEVASTATED! So then we turn the pages and start brainstorming,
well he can’t possibly have this because in the three weeks it took to get the
results he started moving his arms again and in SMA once you lose it you never
get it back. Well November 8, 2011 came soon enough and back to Neurology we went
for results. Need I tell you what they were...?
Type 1, Spinal Muscular Atrophy, the worst, most severe form you
can possibly have. We were informed Carter would need multiply disciplines of
medical assistance if we chose to intervene at all. We were told his life
expectancy was lucky to be age 2 but more like 10 months. We were told there is
no treatment of any kind nor is there a cure. Somehow I was able to compose
myself through this entire visit, honestly I just let it all in one ear and out
the other, guess I’m good at that. The entire ride home Mark and I didn’t say
too much unless we took turns blurting out all the reasons we didn’t believe it
to be true. Next it hit us that it takes BOTH mom and dad to be silent carriers
of the gene to give it to your child, and that there’s a 25% chance with every
pregnancy. We were thinking of Cullen and how he’s healthy. Next we questioned
could Cullen have it also just maybe be type 2,3, or 4, but they said NO you
would still notice some sort of weakness.
So there it is….Age 20 Landon’s born, spontaneously given CCHS,
Hirsprung’s and Epilepsy, age 25 Cullen’s born perfectly healthy and age 26
Carters born, of a different father I might add, and yet had Type 1 Spinal
Muscular Atrophy that he got from Mark and I… Now I take my moment to fall to
pieces. Now I fall to my knees and ask the man upstairs, “WHY???” really? Two
children with such unforgiving, debilitating, no treatment, no cure
diseases…WHY???? What in the world did I ever do in my life to deserve to watch
my babies suffer to such great extents that no baby should ever endure? I had
my issues with tears and short lived depression but somehow once again I
managed to pull myself together. I swore I’d do everything possible to
save Carter as I did Landon, and from that moment on that’s exactly what I did,
with Mark right by my side. We have taken this journey beyond extremes, we have
had the boy’s crash at the same time needing resuscitation, I take one, he
takes the other. We have had them side by side in intensive care together for
40 days, we have had one in ICU for months while the other 2 are at home, we
have had Carter and mommy leave the local ICU after months and fly across the
country to another ICU in New Jersey, forced to leave daddy and brothers
behind. It has been a never ending progressive roller coaster ride of tears and
joy. Again, I can say, there is nothing I would change about either of the boys
than for them to have been blessed with health, for their sake. But I know in
my heart each of them are here for more than just a reason. Each of them have
taught me so much in so many different ways, that “I” could never repay them.
They have taught me to believe in things I never thought possible, they have
educated me in such ways that gave me the knowledge to save other children’s
lives whom might not be here today had I not met them in their times of need. I
owe every bit of that to my babies, and to my husband for always putting up
with me in my stressed out times, for always being my rock and my shoulder to
cry on, for forgiving and forgetting my unkind words in my times of despair,
and I thank the friends I met along the way, the friends that held on with me,
the family support and the dedicated nurses who have become like family to
us…all who pulls together to help our family, whether it’s a fundraiser, a day
off of work, a grocery run, a few hours of watching the boys so Mark and I can
step out of the house for a date night and pretend for just a moment all the
weight on our shoulders is nonexistent.
As awesome as those moments are the hardest, yet best moments are
returning home to our babies. See, Mark and I have always kind of had this
agreement, perhaps why we work so well together, but we don’t mind the
sleepless nights, the no privacy, the no vacations, no social life, high
tension stress levels we live under…because it’s what our kids needs from us.
It’s not their fault, understanding it’s not ours either, but they heal faster,
and smile longer when given a healthy environment, and I truly believe this. If
these boys lived in an unstable home without all of the love, support, and one
on one time we try to give them, the loving supportive relationship Mark and I
truly have, then I don’t think our boys would be where they are today!
Carter had his many battles as he followed in big brother, Landon’s, footsteps. He quickly got worse and had to have surgery #1 on November 23, 2011 to place a feeding tube in his belly and have the top of his stomach tied to prevent reflux. Soon after Thanksgiving, Christmas approached and he had progressed enough to lose the ability to breathe on his own and he ended up in the hospital only to return home on bipap (a ventilator via a face mask). Carter contracted a virus and was admitted on my birthday, January 23, 2012 which ended up being about a 40 day hospital stay, not far behind him came Landon on January 30, 2012 and they sat side by side in ICU until almost March. This was another time we almost lost Landon due to dehydration, hypovolemic shock, and his organs shutting down, almost losing Carter the very same day from collapsed lungs. I literally was running from the 12th floor ICU with Carter down
to the 1st floor ER with Landon, fearing I’d lose
one and not even be by their side. There is no way to describe such pain and
exhaustion. This was such a hard time for Mark and I as he had to take leave
from work the entire time due to me needing to be in one room, him in the other
and the inability for us to go back and forth spreading their viruses. It was
awful. But I must say we got tons of support. Grammie stayed home and took care
of Cullen, who I hardly got to see and missed dearly! Marks coworkers visited
often bringing prayers, social time, and food! Family came from out of state to
support us as well and of course friends made their visits. It was touch and go
for quite awhile with both boys, some nurses were great, other ticked us off, and
some had to be banned from the boys’ rooms. We made friends and we made
enemies. Some love us to this day and some turn their heads in the hall, but
after all said and done I was very proud that Mark and I stood together as a
team under all the stress and pressure, we backed each other up in all the
medical decisions we were forced to make, all in what we felt were in our
children’s best interests. We still do to this day.
Our house is like a zoo ninety to nothing all day and night. We
say we run the “Costello ICU!” It’s true. We have about everything in our home
as does an intensive care unit. We were forced to sell our house when Carter
was diagnosed and Grammie moved in to help as there was no room for her nor was
the house setup to accommodate Carter’s wheelchairs. We took a huge hit on the
sale of that house but were blessed to get into a new one that has been great
for the boys’ needs. That was our primary goal was to get closer to Mark’s work
for emergencies, closer to the hospital for emergencies, and a place for
Grammie, and room for the boys and all their needs. Believe it or not after
almost a year of searching we found it! It might not be on country land like we
would love, but after weighing the options of 911’s response time in the city
versus the country, we obviously chose the city. Maybe one day the boys will be
stable enough to scoot out of the city a bit onto some peaceful land that the
boys can go outside and just “be boys.” But I must say Carter’s year in 2012
was no easy one and I thank my lucky stars we chose the house we chose because
he’s crashed and 911’s response to help us, along without training and
knowledge was more than critical in the fact that he’s still here today.
After the January 2012 hospital stay, Carter really didn’t catch a break in 2012. He practically lived in ICU and/or the hospital for 102 days of the year with 23 doctors visits and 2 ER visits all outside those hospital stays. It was a BUSY year! On July 5, 2012 we finally gave in and had enough of the collapsing lungs, and hospital stays and decided it was time to trach him. I think it was probably the best decision we ever made for him. He had his second overall surgery,
placing a tracheostomy
and has never looked back. He has been growing like a weed, been spending far
more time at home with us than in the hospital. He has finally outgrown his
first wheelchair which was a manual chair and our awesome occupational
therapist helped get him his very first powerchair! We worked together with
some great people to make it happen and it is finally ready to roll. Carter has
been “learning how to drive” a little bit each day as we practice around the
house without destroying the walls, or we try to go around the block for a
spin, which he loves, and smiles from ear to ear. That smile is something
that keeps me moving forward every day, (knowing in my heart one day he could
be robbed of the most precious thing that gives him his nickname, Smiley) even
when people ask me why don’t we just let go. Because as long as they show us
they are happy, I’ll let them make those calls. I feel like if it’s really time
for them in heaven, nothing I am capable of doing down here is going to keep
them here. Their minds are intact and brilliant, they are happy, they show this
every second of everyday, so who am I to be the quitter?
So after hours of writing and shedding tears, I have finally,
after 8 years, produced a somewhat detailed summary of what these past 8 years
have been like. The heartache and the happiness. I wouldn’t take back a single
thing I did because maybe it would not have brought me to where I am now. The
stress is truly higher and it builds by the day. I can proudly say I have never
drank my way through, I have never done drugs, and I have never needed any sort
of medicine to numb me to what is reality for me. Sometimes I think perhaps I’d
be a much better person to be around, haha, but in the end, it is yet another
accomplishment for me. I look back and sometimes and mad at myself, feeling
like I could have done better at some things and of course at the early start I
had in a career to only be a non-career woman now, but then I’m quickly
reminded that maybe I was meant to be a doctor of some sorts, just paid with
hugs, smiles, and love instead of money. For me that’s so worth every second I
spend inside these walls. Don’t get me wrong, I need lunch dates with my girlfriends,
I need date night with my husband, and he needs his time. We all could always
do better at taking care of ourselves, but I think we fare pretty well under
the circumstances. Of course we dream of winning the lottery someday and are
able to provide our boys anything and everything they need now and forever to
come, that I could pay my way to a cure of CCHS & SMA, but don’t we all
wish those things. Maybe one day it will come true.
I only hope for the people
who don’t live the lives we do, that they appreciate what they have. The
feeling and thoughts that sit in the back of your head when you have kids like
ours, just never go away. I can buddy up with doctors all day who are there when
I need them, I can
learn stuff from them that half the parents on earth don’t know
how to do to save their kids, like resuscitate or intubate. I’m not a doctor,
or nurse, or paramedic, or therapist, but actually I’m all the above. I have to
be. My babies’ lives depend on my knowledge on how to respond to their needs
every single day that passes. Knowing in the back of my head that at any given
moment could be my last with one of my children is probably the most
frightening thing on earth, for any parent, but for ones who you know if you
run to the bathroom and one of your kids circuit’s comes unplugged…they aren’t
breathing, you better respond. To know that if you get so wore out that you
literally just pass out and don’t hear an alarm beep at any given time, could
be fatal. These are all burdens I have to live with everyday; this is the
weight on my shoulders that will never go away. It doesn’t matter if you have a
house full of nurses or any other types of help, I am mommy, always will be,
and I need to know for me, that whoever is in the presence of my children when
I’m not, will respond with as much love, care, and knowledge of the needed
procedure as I would if it were me. It’s just my way of life. It’s just my
normal if that’s what you want to call it, and though I don’t wish it was this
way, it is, so we make do, and we do it with so much love and smiles that our
babies feel it and know we are here to support them in every way. Anything in
life they want to do, they can do it, perhaps with some modification, but as
our foundations motto states:
www.gofundme.com/22hs5k
With
Much Love,
~
Brandy Costello
2013
