Tuesday, January 5, 2016

Five Years...and Counting!

Five years ago today, Eli was ten weeks old.  Exactly ten weeks old.  We took him to the doctor for his 2 month check up.  We had a few other questions in addition to his routine check up.  He'd been vomiting a lot.  No, it wasn't spit up.  He was vomiting.  There was no rhyme or reason to it.  He might vomit a few minutes after a feeding, hours after a feeding, during a feeding, or he might go days without doing it.  He didn't seem to be gaining much weight.  Also, he was sleeping more.  But when that beautiful, brown eyed baby was awake, he was so alert!  He followed us around with those eyes, he knew who we were, he knew his big brother, and he was smiling at us a lot.  He had wet diapers, he had poopy diapers, he took a pacifier, and he nursed well with the exception of the two days before the appointment.  So we weren't overly worried...but we were still worried.

Five years ago today, I took him for a check up.  There, we found out not only was he not gaining weight anymore, but he had lost weight!  He was 8lbs 12oz at birth.  We know he got up to about 9 1/2lbs.  Five years ago today he was 8lbs 5oz.  He weighed less than he did at birth.  Later that day, he was admitted to our local hospital.  Later that night, after a chest x-ray showed his enlarged heart, he was transferred by ambulance to St. Mary's in Evansville.  A few hours into the next morning (really the middle of the night), we had a pediatric cardiologist standing in front of us drawing pictures of a normal heart and pictures of Eli's heart.  Those pictures were so different from each other it was terrifying.  (Yes, I still have those drawings!). Even more terrifying than her pictures were some of her words, such as  "open heart surgery" and "survival rates".  Less than 24 hours after our appointment Dr. Amy's office, Eli was baptized and loaded into a helicopter to be transported to Indianapolis.  Bryan & I drove home.  We had to pack and make arrangements for Zachary before we headed to Indy.

Once in Indy, we were given more information.  A lot of information.  Information we didn't want but had to face.  Surgery was inevitable, but his case was very complicated.  They had never seen or heard of a ten week old baby just receiving a diagnosis like his.  (Not 100%, but I'm not sure they have since then either).  Doctors needed to confer and determine which surgery would benefit Eli the most.  Surgery was set for January 10.  In the meantime, we waited.  We held him, we kissed him, and we watched him.  Basically, we watched him deteriorate.  He was dying.  In the few days between his diagnosis and surgery, we saw his energy level plummet.  He was being tube fed because it took too much energy for him to eat.  He was on multiple medications that were slowly increased as his heart function decreased.  We told him goodbye, not because we thought he would die, but because we knew there was a chance (a one in three chance) that he wouldn't come out of the OR.  So, yes, we had to tell him goodbye, just in case that happened.  As we did that, every fiber of our being was pleading and begging with God to let him live. 

I won't go into more details of the next five years because most of you have been following us that long.  Let's just say he made it out of that OR.  And through three more heart surgeries.  And battled a staph infection for over a year.  And has had a tough road to recovery from massive strokes.  And has been in multiple therapies for well over half his life just to keep up with developmental milestones and stroke rehab.  And has had many, many echocardiograms, heart catheterizations, blood draws, doctor appointments, and countless other procedures and tests.

But he's alive.  And just this morning, on the fifth anniversary of the appointment that began this journey for us, he got dressed almost completely by himself.  He's been pretty consistent doing his pants, socks, and underwear (YES!  He's fully potty trained now!!!).  Shirts are harder for him because of the limited range of motion of his left hand and arm, but today he took initiative.  He asked for help getting his pjs off his right arm, but then he removed his shirt alone (he has done that before).  Then, this is the exciting part, he put on a long sleeve shirt BY HIMSELF!  It took a while and he asked a few times for help.  I showed him how to do it, but then started him back at the point he was at before asking.  After several attempts, HE DID IT!  Let me tell you, once this kid decides to do something, he can accomplish anything. 

So, for those of you who think you're having a bad day, suck it up.  No, I don't mean all the time.  Everyone is allowed a complaint now and then.  But, overall, get some perspective and suck it up.  If that five year old can go through the hells he's been through and still smile, tell jokes that make no sense, and laugh, then I promise you'll get through your bad day.  (That little speech is directed at myself too.  None of us are exempt from feeling sorry for ourselves, but we all need to learn to handle it better.)

The following are a few pictures from the night before Eli's first surgery. 

Zachary was 3 years old and didn't really understand what was going on.  We told him he didn't have to, but he could kiss Eli bye before he left.  Zachary immediately wanted in bed beside him and snuggled his baby brother.  The tubes and wires didn't phase him a bit.

We were so afraid this was our last family photo.  Bryan and I don't look the greatest here, but we had both our boys with us and nothing else really mattered.

The last picture we had of him before he was taken to the OR.  Obviously neither of us had any sleep the night before but we needed to take as many photos as possible and give him one more kiss again and again and again.

This was just hours after the surgery he wasn't supposed to survive.  I realize it's very hard to look at him with all these machines, wires, IVs, and monitors, but please understand how exciting it was for us to see all that.  If he didn't make it, none of that would be there.  Each thing was an important piece to his well-being.  And honestly, we didn't even notice most of it, we just saw our perfect baby boy with a beating heart!

And this is the boy wonder who wouldn't pose for a picture today.  He's the most stubborn, head strong, and determined to get his own way boy I've ever met.  And I'm so thankful for those qualities because those (along with all his good ones!) have made him the fighter that he is!

As always, thank you for reading.  We are grateful to have your support on this journey.  Please continue to keep us in your prayers.  Who knows what the next five years will bring.  Heck, some days, it's hard to make it five minutes at a time!  Thank you and remember to cherish Every Little Beat...