Who I Am

 

Today is World Down Syndrome Day in honor of raising awareness of Down Syndrome and those individuals who are blessed with three copies of the twenty-first chromosome.  My amazing son Gavin, is a precious, amazing baby boy who happens to have Down Syndrome, and prior to his diagnosis we knew very little about it.  But guess what?  It's not nearly as bad or as scary as most people think.  Ninety percent of pregnancies with a prenatal diagnosis of Down Syndrome are terminated.  Hopefully, we can help change that statistic by raising awareness of Down Syndrome and show how amazing these kids and adults are!  I also hope that through raising awareness, that the path continues to open and grow for our kids to thrive in mainstream classrooms, sports teams, drama clubs, etc.  A common theme for Down Syndrome is "Who I Am"....so thank you for sharing in our story, in our journey and in our miracle.

 

 

WHO I AM

 



I am Heaven sent

 

 

 

I am a son

I am a little brother

 

 

 

I am a grandson 

 

 

 

I am a great-grandson 

 

 

 

I am a miracle 

 

 

 

I am a fighter 

 

 

 

I am a gift

 

 

 

I am independent 

 

 

I am an inspiration

 

 

 

I am Gavin

 

 

 

 



 

 





Staying Strong

Gavin has been doing really well lately.  He is 10 lbs 2 oz and steadily putting on weight.  The growth charts are now on a steady incline!  Last Monday, Gavin had another echocardiogram to examine how his heart is doing after the last cath lab procedure.  He was such a pro during the whole thing.  He laid completely still and just cooed the whole time.  The results of the echo showed that Gavin's right pulmonary artery was measuring at a 10, but his left pulmonary artery (LPA) was still at about a 5 which is where it was before he went into the cath lab.  The angioplasty did not hold.

Our last visit to the cath lab, the cardiologist decided against putting a stent in Gavin's heart, because the area where the stent needed to be placed would have caused it to cross over into another artery.  This was because of Gavin's size and his heart being so small.  As he grows, and as his heart grows with him, more space will develop between those arteries which will cause less concern for the stent placement.  If the stent nicks the other artery, or even if it ends up crossing into that artery and causing problems, the only way to repair that would be with open heart surgery.  And no one wants Gavin to go through another open heart procedure so soon, and unnecessarily, after his last one.  But if blood flow is significantly slowed to the left lung, then we are back to concerns about whether or not his left lung will grow and develop normally.  So we were again at a point of having two options, with neither alternative being ideal.

So before rushing into the cath lab, we headed off to radiology for Gavin to get a lung profusion study.  Basically, they lay him in an MRI type machine that takes video of blood flow from his heart to his lungs.  Then, an exact percentage of blood flow can be measured and that measurement is what the cardiologist would base his decision on for our next step.  Gavin, again, was a pro!  He had a full belly of milk and just laid there.  The cardiologist asked me a few days later if Gavin had to be sedated and I told him no.  He said that was great news, because the radiology lab was always trying to sedate patients for that procedure, and now he could use Gavin as an example of a successful exam where the patient did not have to be sedated.  I was proud of my little man for being able to be that example and success story!

Well, the lung profusion study results came back yesterday.  Gavin's right artery has about 62% blood flow and his LPA has about 37%.  That, to the cardiologist, was an acceptable difference to not have to rush Gavin back into the cath lab.  So now we wait another month before we run through this test again.  It's possible that Gavin's LPA may grow on its own, or that any additional time we can buy allows his heart to grow bigger so that the procedure will be safer.  It feels so awesome to be on a roll with the good news lately!

Gavin does have a little cold right now, and he's coughing up a storm and pretty hoarse.  He's been checked out though and it's just a normal cold.  With his heart condition, there's always a concern of fluid building around his heart when he gets sick.  But for now, he just has his first baby cold!  I told Chris that Gavin's hoarse cry was so sad...that it sounded like his "just coming off the ventilator cry."  How strange it is, not only that your child has an "off the ventilator cry", but that you've heard it and been through the process enough that it is a somewhat common sound.

It just makes me so grateful for Gavin and what an incredible fighter he is.  While at his last echo, the cardiologist was examining Gavin and just commented on all of Gavin's scars and how Gavin has been through the ringer.  While a little disconcerting coming from a pediatric cardiologist, I had to smile.  Yes Gavin has been put through the ringer.  But he has survived it all.  He has come out of every fight stronger than the one before and he continues to get better with each passing day.  When I hold him and feel his heart beat and listen to his breath, I just have to close my eyes and absorb that miracle into my soul.  And when times get tough, I get look at my son and remind myself, that they have been tougher and we survived that too.  And because of those struggles, we are a stronger family with a stronger faith.

Riding the Roller Coaster

We are still holding tight on this roller coaster ride that 2013 is giving us.  We would like to thank everyone who helped us reach out to our Congressman.  A Congressional inquiry was filed on Chris’s behalf a few days ago.  The command has thirty days to provide a response.  Unfortunately, in the consistency with the mediocrity of this command, Chris was told as soon as the Congressional inquiry was received that his life would be made more difficult, and that has begun.  This command has done nothing but make every step of this experience more and more difficult for us.  From questioning every Red Cross message, to requiring me at 8 months pregnant and as a mom of a 24 hour old baby, to request that a surgeon, provide a probability of death for our son.  Chris has been at this command for nearly six months now.  And despite multiple Red Cross messages, emails from doctors and surgeons, and our EFMP paperwork, the command has yet to begin the process or even discuss the possibility of granting Chris a hardship transfer.   It is unfathomable that the United States Marine Corps is inherently unable to send one decorated Marine home to be with his family in times of PROVEN medical hardships.  But it seems that everywhere we turn these days, the people in a position to help are either morally inept or generally apathetic and incompetent.  Our request has not been unreasonable by any means.  There’s not but so much you can do when only bad human beings and “leaders” hold the power.  How long do you fight a fight that you have no chance of winning?

That being said, I refuse to let those human beings who lack any common decency or humanity to change who I am as a person.  As frustrating, infuriating and heartbreaking as this treatment has been, I am choosing to learn from it.  I will work to be kinder to people in general.  To be slower to judge others and more willing to help those in times of need.  I will be appreciative of the blessings and miracles I have been given, and not be so quick to let the hardships and moments of darkness overwhelm me.  It’s amazing how quickly we forget all of the wonderful things in our life when things get difficult.

And speaking of wonderful things in our life….I was amazed at the outpouring of love and support everyone showed by wearing red on Tuesday in honor of Gavin.  For those of you who don’t know, February is heart disease awareness month, and on Gavin’s 4 month “birthday” we asked that people wear red in support of our little man being a congenital heart disease survivor.  It warmed my heart and brought a smile to my face to see all of you supporting our warrior!

Gavin went for his four month well baby check on Tuesday.  His pediatrician said that he looked completely healthy for the first time ever!  He weighed in at 9lbs 13oz, had great color when he’s usually a little dusky, and somehow there was no evidence of a heart murmur which has always been present!  I was standing in the exam room beaming ear to ear with pride in Gavin.  He gets his heart checked out again Monday, but other than that, we only have to go to the doctor every two months as a normal newborn would instead of every two weeks! 

I also feel like I’m finally hitting my stride with working full time, doctors’ appointments, taking care of both kids and handling the ostomy bag.  I am stunned that what was once impossible and overwhelming, has somehow become my every day, manageable norm.  Having a wonderful support network, constant words of encouragement and two kids who inspire me to smile and love with my whole soul are the pieces of strength that get me through the hard times.

Now for some MORE amazing news.  We were told that insurance refused to cover $385,000 of medical expenses at Duke.  (I will leave the healthcare debate alone, but at four months old, Tricare has yet to provide a policy number for Gavin and Medicaid has lost our paperwork three times now.  So thank goodness for private insurance).  I called Duke to ask about setting up a payment plan.  They said our remaining balance was $2,000.  I confirmed our account number and asked about the $385,000 and was told that the only thing owed to Duke was $2k.  So whether the hospital settled with the insurance company, or provided necessary documentation, or a charity organization helped on our behalf, those expenses were somehow covered.  AND, so many of you generously donated to the Give It Forward fund my cousin set up for Gavin, and we were able to cover 50% of that remaining balance on the spot.  By the end of March, we will be debt free at Duke.  How did that even happen? 

So the mental and emotional roller coaster ride is still going strong for us, but today I draw inspiration from my children.  I choose to love like a child does.  Laugh like a child does.  And forgive like a child does.  The world does jade us all, but what happens to us does not need to define us.  We must learn and grow from hardship and strive to become better versions of our current self.   While half a dozen poor leaders have put undue obstacles on our journey, nothing they throw at us can compete with the fact that God has given us a miracle.  So throw us on a roller coaster and keep the obstacles coming.  While difficult and unfair at times, none of it will be strong enough to break our spirit because we have lived through miracles.  And the largest of those miracles happens to be a warrior surrounded by a force of guardian angels that no burden can compete with.  

Guardian Angels

I am beyond thrilled to share that Gavin has had two GREAT appointments lately!  His surgeon was very happy with how Gavin's stoma looks and doesn't need to see him back for six months.  And his pediatrician is thrilled that he is putting on weight and developmentally on track despite all of his setbacks.  This boy is a fighter and he certainly inspires me every day.

Gavin has finally started cooing some.  He has the voice of an angel.  He is becoming much more active and watching him grow is so empowering.  There are still difficult days.  Ones where negativity becomes all consuming.  But we survive those days and wake up to start a new day with a new energy.  There's no way to remain positive at all times.  It feels like we are running a race.  A race where spectators are lined all along the course, and as we get tired or hit our breaking point, voices from the crowd urge us to keep going...to push through.  And that motivation that each of you has given us has helped us through those tough times when another step seemed impossible. 

Someone asked me the other day if God has revealed his purpose in giving me Gavin.  I still don't have an answer for that, but here's what I have learned.  I have struggled in my relationship with God for years.  Not sure if I really believed in him myself, or if I believed because I was raised to believe.   People have often said that you have to have faith.  Well, it's hard to maintain faith in people and in God when you live in a such a jaded world.  I am a person that needs to see it to believe it.  But once you see a miracle....experience a miracle....LIVE a miracle.....you have seen it and you can't help but believe it.

There are times in life when coincidences occur.  And then there are times that you reflect on your journey and realize that your life was not a series of circumstances, but a beautiful, messy plan that brings you to exactly where you are meant to be. 

Is it a coincidence that out of the four colleges I had to choose from, that I chose to go to Charlotte?  While at Charlotte, that I was introduced to Krav Maga and found an instructor who, to this day, has been one of the most inspirational people that I have ever met?  He gave me the quote, "If you fall down seven times, get up eight."  He taught me that the fight's not over until you're dead.  That the spirit of a warrior is equally, if not more important, than the skill.  Is it a coincidence, that nearly ten years ago, these lessons were being instilled in me?  Or that I decided to join the Marine Corps on a whim?  That some of the women I met in the Marines, continue to inspire me and give me examples of strength every day.  That being in the Marine Corps allowed me to cross paths with Chris who is my exact balance in life.  A man who has a heart to love unconditionally, a giving spirit and patience that rarely runs out.  Chris has been through more pain and struggle in the past ten years than one person should.  But you would never know it.  He is humble man, persistently optimistic and the best father a woman could want for her children.  (After my father, of course :) )

My father decided to change his career course several years ago.  While a struggle for him at the time, it put him in a position to have the flexibility with his current job to be here when we needed him.  Is it a coincidence that my dad is in a medical career field, which made me feel more comfortable leaving the hospital with Gavin knowing I had my dad's medical experience to fall back on for the first few days out of the hospital?  My mom was affected by lay-offs.  And she chose a direction in her work to have flexibility to be with me when needed as well.  She has been able to watch Lorelai while we spent months at the hospital with Gavin.  And, (by coincidence?) I grew up in the same town as my grandparents.  At times when my mom could not watch Lorelai, my grandparents were easily able to step in and help out.  I had to travel for work two weeks ago, and with Chris gone I had no one to watch Lorelai and Gavin.  Is it a coincidence that my parents are in a position to drop everything and spend a week watching the kids at my house?  Or that my mom is always around to spend the night at the hospital when fatigue has broken me down? 

Is it a coincidence that two years ago, Chris had a cousin who spent months in the NICU with her son?  That she was able to be a source of support and help provide encouragement on the harder days?  That Chris and I have settled in an area where we are close to both of our families?  And that his family has been able to meet me in the emergency room with Gavin when I was on my own, or that his aunt has been able to care for Gavin in our home four days a week while he cannot be around others?  Is it a coincidence that my grandmother somehow always has a card of encouragement in my mailbox the exact day that I need it?  Or that a phrase from my other grandmother sticks in my head on the bad days?  When my aunt was in the hospital recovering from brain surgery, I held her hand and told her it was ok.  My grandma said, "No it's not, but that's ok too."  That comment holds so much power for me these days.

Is it a coincidence that my sister-in-law only lived about an hour from Duke, and found herself in a position to be able to drop everything and be with me through Gavin's delivery?  Or that she made it there only 20 minutes before he was born?  And that she happens to be a Godly woman who gives me encouragement when I need it?  Or that my brother sometimes works at Duke?  So he was able to stop by and see us and Gavin in the ICU while he was at work.  Is it a coincidence that a photographer, now friend, that I found when we first moved here, happened to know someone with a child with Down Syndrome?  And that person happened to be a source of advice and strength that truly understood what we were facing?  That she recommended we go to Duke?  Where every parent in the cardiac ICU had strong, unshakeable faith in God.  That Chris's deployment strongly affected our decision to deliver at Duke so that I could be close to my family?  That I work for a company that has been beyond measure in the support they have given me as we have endured Gavin's battles so that I have not had to worry about job security on top of everything else? 

Or how about the fact, that while I was on travel for work, I met someone who has a sister with down syndrome?  I started telling him about Gavin, and he said "Wow.  You're sitting here helping us like nothing is going on...like you haven't been through all of that.  You must be a warrior."....someone who has never heard Gavin's story and has no idea what the word warrior means to us.  And is it a coincidence, that the only name Chris and I could agree on was Gavin?  We didn't even know that it meant "white hawk of battle" until weeks after we picked it.  Or that his middle name, which is my father and grandfather's name, means "ruler of an army."  We didn't pay any attention to what his name meant when we picked it, but is it a coincidence that we gave him a warrior's name?

And the answer that I have found to all of those questions, is a resounding no.  None of it has been a coincidence.  Every step, turn, stumble, success, and failure on my LIFE journey has prepared me for exactly where I am today.  Surrounded by friends and family who have been teachers, coaches, mentors and cheerleaders.  Gavin is our GOD GIVEN miracle.  We were encouraged to terminate the pregnancy.  We were told it would be a medical miracle to ever bring him home from the hospital.  We were prepared for him not to survive his open heart procedure.  We watched as the blue code cart was rushed to his bedside as he crashed in the ICU.  We had a huge sigh of relief as he came home from the hospital knowing that his fighting was done.  Only to find out that part of his colon was dead and required surgical intervention. 

But now have breathed a second sigh of relief.  Gavin IS home.  He IS gaining weight.  He IS developing normally.  He IS as healthy as he can be right now.  He IS fighting back.  And he IS winning.  Because God gave Chris and I battles to mold us into strong people, before we ever knew of each other.  God prepared us with strength for this journey and he molded Gavin into a fighter of epic proportions.  Gavin has survived battles that no one thought possible.  And he has survived them as a physically stronger person than he was before he entered them.  He is such an inspiration! 

And every single one of you who have helped us on this journey, who have prayed time and time again for Gavin to have strength to make it through, who have sent messages or provided dinner, or who have sat with us through surgeries, visited us in the hospital, pushed us through fear.....each and every one of you are a guardian angel sent by God to help us through our journey.  We are certainly blessed by all of you.

So through these past few months, I have learned without a doubt, that God is real.  I have seen his miracles.  And his guardian angels...

Procedure #4

Gavin had a cardiac catherization this past Wednesday, in an effort to fix the narrowing of his left pulmonary artery (LPA) without having to go through another open heart  procedure.  The rate at which a baby's lungs develop is greatly affected by the amount of blood flow to the lungs.  Gavin's LPA was about 50% of the size it should have been, and therefore his cardiologist was concerned that without intervention, Gavin's left lung would fail to develop normally.

The procedure took about three and a half hours.  First, the cardiologist used a catheter to take pictures of Gavin's heart and examine the LPA, and other areas of his heart's anatomy, in better detail than could be seen on his last echocardiogram.  The next step was to put a balloon on the end of the catheter and inflate it inside of the LPA in an effort to break it open some and allow more blood to pass through to the lungs.  If the balloon didn't work, the next step would be to insert a stent.  The cardiologist was successful in cracking open the artery with the balloon, but one area is still more narrowed than he would like.  However, with Gavin having had an operation nine days prior and only being two months out from his open heart surgery, the cardiologist felt that there would be more risk than necessary to attempt to place the stent.  While the balloon didn't fix the LPA as well as he would have liked, it did make a significant improvement.  Had there been an issue with placing the stent, the only way to fix it would have been another open heart operation.  Gavin's body just needs a break for a little while, before he should endure anything like that (if necessary).

And now we wait.  In about three months, cardiology will do a contrast study to look at Gavin's heart and lungs.  The will measure the amount of pressure and blood flow going from the heart to each lung.  If both lungs look fairly even, then nothing else needs to be done.  If it still seems like the LPA isn't letting enough blood flow through to his left lung, then we'll be back in the cath lab to have that stent placed after all.

As usual, Gavin ended up in the ICU after the procedure.  He really has a hard time coming off of anesthesia and a ventilator.  I personally think the anesthesiologist took him off of the ventilator too soon this time.  Gavin has never come directly out of anesthesia and had a ventilator removed.  He is usually on it for hours, if not days.  This time, he was taken off of it almost immediately.  When we went back to see him, he was really struggling to catch his breath.  It was very ragged and shallow and he was working hard.  The nurse gave him a breathing treatment and some morphine and he was able to get his breathing back to normal.

After an uneventful night in the ICU, Gavin came home.  We are crossing our fingers and praying that this is the last time he'll be in the hospital, until he has to have his colonoscopy closed.  At this point, I would be happy with a full month out of the hospital and surgery free.  He really is a resilient baby.  It still seems surreal at times that he has gone through so much, and we have come close to losing him so many times in his short three months on this earth.  But this kid is a fighter of epic proportions, and I see him getting stronger every day.  He is eating like a champ and finally putting on weight.  One day we'll be out of these newborn clothes and on to the 0-3 month ones!

Chris is headed back, and of course on his way out, the winter storm hit.  And Gavin's ostomy bag started leaking right before we were piling in the car to head to the airport.  Luckily, Chris was here to do ONE MORE bag change.  It is leaps and bounds easier with an extra pair of hands.  Between keeping Gavin's arms and legs down so he doesn't get anything in the opening, and trying to clean and prep the area and get the bag set and placed correctly it seems like it's a requirement to have two people.  The hospital has set up for us to have a nurse come to the house as needed over the next two weeks to help me with the ostomy bag and to check on things like Gavin's weight gain and signs of infection.  It's such a blessing to have the opportunity to have a nurse help the transition from having help to being on my own. 

Gavin was asleep in the backseat when Chris left.  But Lorelai was wide awake and this was the most heartbreaking going away yet.  As soon as he stepped out of the car, she started and screaming and crying "No Daddy bye bye!" over and over again.  Then he went to hug her and she wouldn't let him go.  He literally had to peel each of her hands off of him as she kept screaming for him.  It was absolutely heartbreaking.  Luckily, kids bounce back fast.  The night he left, I heard her Daddy bear on the baby monitor at least 20 times say "Lorelai, Daddy loves you and misses you" as she pressed it again and again before finally falling asleep. 

I woke up this morning and fell back into the routine of being a sole caretaker for the time being.  It's a little tricker trying to manage the ostomy bag, but because Chris changed it before he left, I shouldn't have to change it by myself until tomorrow.  And I'll have the nurse available to help me if I need it.  I LOVE watching Lorelai with Gavin.  If I'm holding him, she'll climb up beside me and just hold his hand.  Sometimes she'll rub the top of his head or his face and just say his name.  She helps pat his back when he needs to burp.  She brings me a diaper if he needs to be changed.  And she loves giving him kisses.

I can't lie.  Life is HARD right now.  But it is so BEAUTIFUL.  The minute you hold Gavin, you can feel how precious and awe inspiring his life and spirit truly are.  Thank you all again for your continued prayers, support and encouragement.  And thank you for following us on Gavin's journey!

Surgery #3

Gavin had his third operation five days before turning three months old.  Once Gavin was diagnosed with Hirschbrung's disease, it was decided that he would need a two part operation.   The first operation was a colostomy, which will help him be able to pass food and stool properly.  The second part, which may be as long as a year away, will involve closing up the colostomy and removing the part of Gavin's colon that no longer works.  The surgeon could not tell us how long the procedure would be, because the team had to biopsy areas of Gavin's colon, and possibly all the way through his large and small intestines, to find out how much of his digestive tract was affected by Hirschbrung's.  Each biopsy would then go to the pathology lab and results were sent back to the OR to determine if the surgeon needed to keep doing biopsies further up.   He would have to repeat the process until he found live tissue.

Luckily, Gavin only seems to be affected in the lower part of his colon, so the surgery was about an hour and a half long.  We were expecting close to four hours, so when I saw the surgeon walk into the waiting room my whole world froze.  As far as I knew, he wasn't supposed to be out yet and any OR updates, including when the procedure was finished, would be transmitted to us through a phone in the OR.  So I sat frozen in my waiting room chair and completely shut down in panic.

Due to the fact that we didn't get any help from Chris's unit in getting him home, we lost about 72 hours trying to arrange his trip.  The surgeon was doing what he could to hold Gavin's operation until Chris landed Monday morning, but his connecting flight from DC was cancelled.  So once he found his luggage, and rented a car, he had to drive the rest of the way to the hospital after spending all night on an international flight.  And Gavin couldn't wait that long to get into the OR.

So while Chris was working on getting to us, Gavin had gone in and come out of surgery.  The surgeon had come out to the waiting room, because his role in the operating room was complete.  He found live cells very soon in the OR, which cut down significantly on the amount of time Gavin had to spend open on the OR table and under anesthesia.  There was a potential for the Hirschbrung's to go all the way up to Gavin's small bowel, but PRAISE GOD it was only the end of his colon that was affected.  The surgeon let me know that Gavin would be going to the ICU because he was having some trouble coming off of the ventilator, but I had expected that going in as he has had trouble with that after his last two operations. 

After the surgeon finished telling me what he found, he asked if I was ok because I wasn't really reacting.  I had spent the night before Gavin's operation in the hospital holding him all night, and his nurse had asked me the same question.  She asked if I was ok, because I seemed to be stoic.  And I realized that's how I've been coping.  I can't break down.  I'm the only parent here, so I have to stay calm, focus on what the doctors and nurses tell me, make sure I ask the questions I need to, because I have to understand everything going on with Gavin as I am the one constant through all of his medical care.  There are certainly times that I do break down, and I can't stop.  But most of the time, the only choice is to hold it together because that's what Gavin needs.  He needs me to be his biggest advocate, and I can't do that if I'm falling apart instead of listening and learning.

But God certainly knows my weaknesses.  I am not a blood and guts kind of person.  So the first time Chris and I were taught how to change Gavin's ostomy is a large blur to me.  When the PA took off his bag and I saw exactly what was done to Gavin in the OR, I just zoned out as the tears started silently falling down my face.  To see your child with an artificial opening and to know that he will have it for at least a year is so heartbreaking.  It was one of the few times I have asked why my beautiful, innocent sweet angel of a son has to go through all of this.  If I could take on every ounce of pain he has had to endure, and multiply it by one hundred, I would take it on every single day of my life.  Luckily, Chris was there and he was able to take it all in when I couldn't.  The next three bag changes we did at home, and he patiently walked me through the steps again and again.  Today, I tried it by myself with him watching and I think I'm finally getting the hang of it, although my heart still breaks every time I do it.

We have been blessed with amazing souls around us.  Between our time at Duke and CHKD, I have developed such an admiration for nurses.  We have had so many that have been beacons of light during the darkest days.  And the three surgeons who have operated on Gavin, have all done so with great skill.  The social workers and chaplains at both hospitals seem to be sent at the exact moments they are needed the most.  The times I would never ask someone to come, and somehow they are sent.  Every nurse, doctor and surgeon who has laid hands on my son, has contributed significantly to him being with us today.  I am eternally grateful to all of them.

Please continue to keep Gavin in your prayers.  He goes in Wednesday to have a stent placed in the pulmonary artery that carries blood from his heart to his left lung.  It is only 50% the size it should be, and the blood flow directly affects how the lungs develop.  It will only be nine days out from his last operation, but this is another procedure that must be done.  Chris will still be here for the stent procedure, but will have to leave two days later.

Gavin was able to come home from the hospital on Friday.  It was unexpected since we were told that he would stay until his stent procedure.  But for the first time since Gavin was born, our entire family was under one roof.  It has been the best three days I have had in a long time.  I never cease to be amazed at Gavin's strength, and I pray that he will keep that strength and fighting spirit through his procedure on Wednesday.  He is my eight pound warrior and I am inspired by him every single day.  He is a living and breathing form of eternal hope.

New Year, New Challenges

Well family and friends, Gavin fought hard and survived 2012!  It has been so amazing having him home and seeing his personality grow as I watch him rise and overcome obstacle after obstacle.  We were hoping that 2013 would be our road to recovery, but it looks like we have a few more hurdles to fight through.

Gavin had been doing well and finally gaining weight.  Two weeks ago, Gavin began vomiting all of his feeds and a significant amount of bile.  I laid him down for a nap and he woke up an hour later screaming.  As I picked him up and prepared to change his diaper, I noticed that his stomach was severely swollen.  So much so that the skin on his abdomen was stretched to its limit.  I called 911 and while I spoke to the operator I was rushing to dress Lorelai and pack a diaper bag.  The ambulance showed up moments later.  I piled into the ambulance with Gavin and Lorelai and headed to the ER.

After getting processed at the ER, the medical team there began pumping Gavin's stomach.  Within two hours, a surgeon came to discuss Gavin going into surgery ASAP as they expected x-rays to show either an abdominal obstruction or a malrotation of his intestines.  However, the x-rays showed nothing.

For a week and a half, Gavin went through multiple x-rays, contrast studies and GI exams.  Nothing was conclusive.  In the meantime, he was unable to eat as his digestive system had shut down and quit working for some undetermined reason.  He lost a significant amount of weight.  So much so that you can now see the wires that were used to put his chest back together after open heart surgery through his skin and you can see the fibers of his abdominal muscles through his skin.  He is now on IV nutrition in an effort to put weight on him.  My heart broke watching my son have to go without food for so long.  But medically, it seemed to be the only choice.

The only option the doctors could think of was to test Gavin for Hirschbrung's Disease.  Nothing in his history would indicate the disease, but they needed to rule it out.  As Gavin's surgeon said, Gavin did not read the textbook on Hirschbrung's.  He does indeed have it.  At least part of his colon has died, and it is possible that part or all of his large intestines is as well.  This will require a two part surgery.  Monday, the surgeons will do a colostomy.  Gavin will have a colostomy bag for at least a year, possibly longer.  Once he is of an age, weight and health status that makes conditions favorable, he will go in to have the parts of his colon and intestines that don't work completely removed.

In addition to this, Gavin's echocardiograms have consistently shown that the pulmonary artery from his heart to his left lung is half the size it should be.  Because blood flow to the lungs directly affects the rate and degree to which the lungs develop, Gavin will need a stent put in that artery to ensure that his left lung receives an adequate amount of blood.

I will not go into my grievances with the Marine Corps at this time, as this blog is to focus on Gavin's story and the amazing, resilient baby that he is.  But I am happy to share that Chris should be on his way home soon to be with us through Gavin's surgery, and hopefully through his stent procedure.

These past two weeks have been indescribably difficult for our family.  Not having Chris here with us through these times feels overwhelming and unbearable most days.  I can't imagine having to be half a world away while my son struggles as Gavin does.  All we can do is pray, fight the fights we can to do what is best for our family and our son and keep hope that some day things will be made right. 

Gavin has all of the nurses falling in love with him again.  He loves being cuddled and it isn't hard to get attention when he smiles the way he does.  He has such a pure, innocent soul and I am so blessed and honored to be Gavin and Lorelai's mom.   Lorelai does great at the hospital with Gavin.  She loves giving him kisses and is very adamant that he will have a pacifier in his mouth.  My heart warms at the love she gives him.

I would like to thank you all again for following our story, and for the support and encouragement you have provided during these hard times.  My aunt sent me a great card the other day.  It said "After every storm there is a rainbow.  And if I have to come paint the darn thing on your ceiling I will!"  Most days lately have been stormy and everything is so much harder with our family divided as it is through this deployment.  But Lorelai and Gavin are my rainbow, and despite what challenges are  bestowed upon our family, we have each other and a massive blanket of prayers from all of you.