Friday, September 23, 2011

The Beginning to the Present

Where's the best place to start any story?  I guess the answer is always the beginning, although sometimes that's hard to find!  Since I really started journaling our story when Eli was diagnosed I think I'll start from around the time he was born.  I know that's backtracking for some of you who may be reading this, but I want to paint the whole picture.  Let me warn you, this will be long.  I promise not to always write so much, but this will give a lot of information and it will cover the past 11 months.  So our journey begins: 

Picture it.....Washington, Indiana, October 27, 2010 (yes, that was a Golden Girls reference).  We were a family of three that morning, but at 6:46pm we became a family of four with Eli's entrance into the world.  He was 8lbs 12oz and 21 1/2 inches of cuteness with a lot of dark hair, extremely chubby cheeks and a bottom lip that quivered when he cried.  Zachary's first words when he saw Eli were, "Oh he's so cute & tiny!"  It was love at first sight, just as it was when Zachary was born.

Zachary was a wonderful big brother and still has not exhibited any signs of jealousy or negativity toward Eli.  During Eli's first two months of life we did a lot of normal family things; went to a couple birthday parties, went to the circus on Thanksgiving weekend, went to a Pacer game (the boys were on tv!), had our winter holidays and were just settling into a new year full of promise when things quickly changed.

There were a few things we noticed about Eli that just didn't quite add up.  Individually, nothing was of major concern, but as we were making a list of things to talk about at his 2 month check up the combination was worrisome.  At the doctor's office the first thing they did was weigh him.  When the scales showed 8lbs 5oz I insisted the scales be zeroed and to reweigh him.  Unfortunately we got the same answer; at exactly 10 weeks old he was 7 ounces less than his birth weight.  Something was seriously wrong with our baby. 

He was admitted to our local hospital, Daviess Community, and testing was started.  We initially thought it was a gastrointestinal (GI) problem because of the weight loss accompanied by some of the things we had on our "list."  Several tests were ordered, some for that evening and some for the next morning.  Luckily, a chest x-ray was done that night and it showed an enlarged heart.  That could have been secondary to a GI problem or it could be a cardiac issue.  Further testing would reveal more answers.  It was decided to transfer him to St. Mary's Hospital in Evansville that night so we would have more availability to specialists as we worked through this puzzle.  Eli was taken by ambulance with a St. Mary's Pediatric Intensive Care RN, a respiratory therapist and an EMT.  Bryan and I went home to pack a few more items since we'd be an hour away from home instead of 5 minutes.  We also needed to see Zachary before we left.
Eli arrived about midnight and Bryan & I got there shortly after.  He was stable and testing was scheduled for the morning.  Unfortunately his heartrate dropped several times in the night and it was decided to proceed with the echocardiogram (ultrasound of the heart and its vessels) at 3am.  Dr. Kumbar (pediatric cardiologist) examined him and did the test for about an hour.  Then she sat us down and started drawing pictures.  The first was a picture of a normal heart and its blood flow.  Then she drew Eli's heart.  Drastic differences.

Even with the extensive exam she did she wasn't sure of all of his defects.  She explained what she knew and that there was more going on but that would be diagnosed elsewhere.  St. Mary's is a very good hospital, but Eli was very little and very sick and needed even more specialized care.  Her recommendation was Peyton Manning Children's Hospital at St. Vincent in Indianapolis.  We had heard of it and also figured she did this more than we did so we'd go with what she suggested.  Again, he was stable so transport would be soon, but not emergently.  He was flown by helicopter to Indy that afternoon.  Since we stayed with him until he left Evansville he arrived in Indy just as we got to Washington.  Again, we had to grab a few more items from home but elected not to see Zachary.  That was a horrible decision to make, but we felt that he'd seen us already dash out of the house twice with bags and he didn't need to see it again.  Besides, by this point we were very upset and heading into 30+ hours without any sleep.  Because they were worried about our safety, Bryan's parents drove us to Indy so we could try to rest (nice thought, but didn't happen).  They even took us separately, Bryan & his dad in their truck and me & Linda in our van, so we'd have a vehicle.

Luckily, Bryan's sister Kendra was still home on Christmas break and could stay with Zachary. I need to pause Eli's story here and brag about Zachary for a moment. He had been against potty training for some time. Bryan & I didn't push the issue a lot because we didn't want him to have a negative attitude about it. Zachary could get his pants down, diaper off & do his business, but he didn't know before he had to go. He was very good at telling us after he went. On January 4th he said, "Mommy, I want to wear my unner-wears today." He never wanted to wear them so of course I got some on him as soon as he showed interest. There were several accidents over the next couple of days, but he didn't get discouraged at all and was wearing underwear full-time by Eli's surgery on January 10th. I'm just amazed at how well he did despite all the changes in his life at the time. 

We arrived in Indy about 5:30pm and Eli had already had a bath (threw up after the flight) and been seen by the PICU intensivist and two pediatric cardiologists.  Another echo had been done and the doctors were ready to talk to us about their findings.  Eli was born with multiple heart defects:  Transposition of the Great Vessels, Coarction of the Aorta, Tricuspid Atresia, and Ventricular Septal Defect.  I'll explain those in another blog for anyone who wants more info on each of them and how they relate to Eli.  Basically our little boy was dying and our only chance was open heart surgery.  All this was on Thursday.  The cardiologists & surgeon had developed a specific surgical plan by Saturday and surgery was scheduled for Monday, January 10. 

Dr. Abraham (the surgeon) came to us on Sunday to explain the procedure.  He was very thorough about the risks and problems we were facing.  The surgery is very complicated and risky, but even more so for Eli.  Most babies with his defects are diagnosed during pregnancy.  The few that aren't usually have problems at birth and are diagnosed within hours of delivery.  The longest anyone could remember a baby surviving at home before being diagnosed was 5 days, and medical personnel were amazed at that.  Eli was 10 weeks old.  People couldn't believe he was without symptoms for that long.  He's still talked about at St. V's as a miracle baby.  You would think that being a little older would be an advantage before surgery, but not in this case.  It was actually complicating things because his heart had worked wrong for so long and was so enlarged.  His condition was rapidly deteriorating.  There were major differences between the Eli we saw in Indy from the Eli we had in Washington just a few days prior. 

Zachary was with us for a few hours on Sunday and gave Eli (and us!) lots of kisses.  Then he went back to Washington and we spent the night saying goodbye to our baby who was still so perfect in our eyes.  Dr. Abraham had said there was a 30% chance Eli wouldn't make it out of the operating room. Of course we were hoping & praying for the best, but we had to prepare ourselves for the worst.  Even if he made it out, we were told he'd be on ECMO, a machine that acts as his heart and pumps his blood for him so his heart can rest.  Our prayers were beyond answered when he was out of surgery & NOT on the machine.  His heart was beating on its own.  He was on a ventilator and had 493,271 tubes & wires attached to him, but we didn't see any of that.  We only saw that perfect baby boy again whose chest was moving with a beating heart.

He was off the ventilator by Thursday night.  He was out of the PICU and in a regular room eight days after surgery.  We left the hospital exactly 3 weeks after he flew there.  Our original expectation was to be in PICU for 3 weeks.  I guess Eli didn't get that memo!  The only "complication" was that he didn't want to eat.  He only wanted his pacifier.  We had to feed him through a tube that went into his nose, down his throat & into his stomach.  Bryan & I changed that weekly for a while, but opted for another surgery in February to place a feeding tube directly into his stomach.  That was a tough decision for us at first, but now we know without a doubt we did the right thing. 

In early February he developed bloody stools.  It was determined he had a milk protein intolerance so his formula was changed and he was taken off of breastmilk, which we had been fortifying with regular formula to increase his calories.  If we wanted him to have breastmilk I would have to follow a strict "no dairy" diet.  I tried for several days but one of the disadvantages is that milk production decreases.  I wasn't producing much anyway and it was very discouraging to follow the diet, drink enough liquids, pump 6-8 times a day and only get about 4 ounces of milk for a daily total.  That, coupled with the stressful changes occuring in our lives led me to the decision to quit pumping.  I struggled with that for a long time and have just recently realized it was the best choice for us at the time. 

After changing his formula he finally started gaining weight consistently.  At his lowest he was about 7 1/2 pounds.  That's too small for our family!  In the middle of March he started drinking from a bottle.  He did wonderfully, but it's a lot of work for a little one to injest and digest enough calories so his feeding tube was (and still is) used on a daily basis. 

He was hospitalized in March for pneumonia and once in July for a GI virus.  Both of those were two night stays and he did great.  Because of his underlying heart problems, we treat any little thing like it could be a big deal.  Overall he's been pretty healthy & very happy. 

A huge reason he's done so well is because of participating in therapy after his heart surgery.  Once he was discharged home we went to our local hospital three times a week, once each for physical, occupational & speech therapy.  Since then we've been involved with First Steps, a government agency that provides therapy in the home.  We loved our therapists at DCH and are so grateful for the advances he made with them, but it's so nice to have therapy at home now!  It's easier on Eli and Zachary gets to participate if he wants.  People are often surprised that a baby can have therapy (I was too in the beginning).  At first it was exercises to help strengthen his neck and shoulders because he wasn't even holding his head up and he was 3 months old.  He's made tremendous advances and we really can't say he's delayed.  His main requirement for therapy is to work with his amount of cardiac endurance so he can get the most benefit. 

Eli's second heart surgery was done on September 1.  Eli was so much healthier going into this surgery and, of the three he will require, this one is the "easiest."  The risk of death was estimated to be 1-2%.  Of course we were still worried, but also felt that he was as ready as he could be for it.  Again, he did wonderfully.  He was off the ventilator 12 hours after surgery (actually a little longer than they had estimated he would need it).  He did have some fluid on his lungs, but that was taken care of by medicine so we didn't have to place a chest tube to drain it.  His heart rhythm changed because of the surgery so a temporary pacemaker was placed while he was in the OR. 

A normal heart rhythm is called normal sinus rhythm (NSR).  Eli's heart was in a junctional rhythm.  During his recovery he would return to a junctional rhythm everytime the pacemaker was turned off.  It's something one can live with but it's not ideal, especially for a baby with only one ventricle.  As of now he's still in a junctional rhythm.  He could come out of it but the longer he stays this way the chance is less & less that he'll return to NSR on his own.  We're probably looking at placing a permanent pacemaker sometime in the next few months.  That's not something we're thrilled about, but we're just happy that it's a complication we can manage.  There are worse things that could happen. 

Overall his recovery from the second surgery was great.  Surgery was on the 1st and he was home on the 9th.  It would have been sooner if not for the heart rhythm issue.  He's resumed physical and speech therapy with some restrictions but was glad to see his therapists again.  He's had one session of each and did very well both times.  His activity and appetite are increasing every day.  We're very proud of our little trooper.

We're also extremely proud of Zachary who had a rough time with this separation for Eli's surgery.  He knows we've had to be apart a lot because "Eli has a sick heart" but he continues to amaze us by praying for Eli and our family and never acting out at Eli.  Zachary has a big soft spot for his baby brother.  He was physically sick the day of Eli's surgery but once he got the report that surgery was over and Eli was doing well, he took a nap and his belly was fine after that.  His first day of preschool was 5 days after surgery.  He thought Mamaw Betty was going to take him, but I was able to surprise him by coming home the night before and take him to school.  He's had a lot of adjustments to make and he's done great with all of them. 

I decided to try blogging because we've had a lot of people who want to keep updated with Eli's progress.  It's not just about Eli anymore, it's all of us.  I used to do Eli Updates on Facebook, but this seems more personal. This should be easier for people to access.  If you want to follow us,  just subscribe to our blog and you'll be notified by e-mail whenever we post something.  We will also use this (and our previous FB posts & comments) to create a journal for the boys to look back at and see what our life was like.  We cherish all the comments and encouragement we've received and hope you continue to spoil us with your kind words here so we can save them as well.

We are very grateful to our family & friends who have helped us so much with countless prayers, lots of meals, help with housework, taking care of Zachary & monetary donations.  We don't know what we'd do without those people.

It's been a quick year for us, full of stress and tears, but also full of achievement, growth, renewed faith and lots of learning. These precious boys are our life.  It's surprising and comforting how our love for them continues to grow --With Every Little Beat......