Saturday, February 12, 2011

Our Faith Journey (so far...)

Today I spoke for the first time for the public about our faith journey with our son Luke's illness.  I wanted to post the manuscript of my speech.  For those of you who don't know our story, it's a good shortened version of the details of our story.  

Our Faith Journey

            As I began writing down what I was going to say today, I sat at my computer in the living room surrounded by my son and his toys.  It’s easy to let my mind wander down the road where my family has walked in the last two years.  How much easier would it have been if on the first step of that journey, we could have seen today—with Luke crawling all over the living room, not attached to any equipment, stopping every few minutes to raise his arms to ask to be picked up?  It probably would have been a lot easier, but at the cost of my husband and me not developing the quality of faith we now enjoy.  Hebrews 11:1 says “Now faith is confidence in what we hope for and assurance about what we do not see.”  That’s exactly it.  Today I want to tell you the story of the faith journey that we have taken through our son’s illness, and to tell you what we knew for sure, even when it was so dark we couldn’t see our hands in front of our faces. 
            I want to tell you Luke’s story, and then I want to spend some time on a particularly big moment for us.  My husband, David, and I began praying for Luke long before he was born.  We prayed for God’s perfect timing in the birth of our first child.  We waited a few months, and then we were thrilled to discover that I was pregnant.  Even though I was sick for most of my pregnancy, those first few months were blissful emotionally. 
            At 17 weeks of pregnancy, the bottom fell out of our world.  My OB-GYN scheduled a level-two sonogram with a maternal fetal specialist just as a precaution, because I was born with a heart defect, and we wanted to make sure our baby was healthy.  The chance of the baby having a birth defect was less than 1%, and we were simply looking forward to finding out whether to paint the nursery pink or blue.  When we visited the specialist, we were overjoyed to find out that we were going to have a baby boy.  The excitement rapidly disappeared when the doctor came in and told us something was wrong with the baby’s heart.  Half an hour later found us in the office of Dr. Jane Kao, a fetal cardiologist.  She gave us the bad news:  Our son has a heart defect known as Ebstein’s Anomaly.  One of the valves in his heart did not form correctly.  It was causing blood to regurgitate into one of his heart chambers, making it so his heart was expanding like a water balloon.  She explained that he had about a 75% chance of making it to birth.  She told us that when he was born, we would have to go through a three-surgery process to reroute the blood through his heart to make it work effectively.  She told us the surgeries would basically shut down half of his heart; blood would pump through two chambers instead of four.  She told us after all of his surgeries, he should be a pretty normal kid, although he probably won’t be able to do competitive athletics.  She told us that any time you shut down half of a person’s heart, the need for a transplant is always a possibility down the road. 
            That night, we began blogging about our journey, asking everyone to pray for our precious son.  And we waited.  We had lots of ups and downs through the rest of the pregnancy.  One specialist flippantly dismissed the possibility of our son even making it to birth.  He had never seen a baby as sick as our son was make it to the point where he could survive outside the womb.  As we waited for either a miscarriage or the birth of our son, we settled on a name for him. We chose the name Lucas.  We liked how solid and strong the name sounded.  Lucas means “bringer of light.”  We had faith that no matter what happened with our son, he was going to light up our lives and bring us joy.  
            The first of our miracles happened during my pregnancy.  While he was in my womb, Luke had a condition called hydropse.  Fluid was building up around his heart.  The fear was that the fluid would become too much and would begin to crush his heart, causing him to go into cardiac failure.  This was the primary cause for our fear of miscarriage.  Through our blog and church contacts, we asked everyone to pray that God would allow our baby to make it to viability, the point where he could survive outside the womb.  The doctors said we needed to get to at least 26 weeks gestation to give Luke a chance at survival.  As the weeks ticked past, we found that the fluid was not increasing, even more incredibly, by the time we hit 32 weeks or so, the fluid had disappeared.  We were amazed at this first very real answer to prayer.  It bolstered our hope even more to find out that the results of the genetic testing we had done revealed Luke was at no increased risk for fetal syndromes like Down’s Syndrome.  We finally began to believe for the first time that we were really going to have a baby. 
            Luke’s birthday was an amazing day.  While we were concerned during my pregnancy that we would have to deliver Luke dangerously early to repair his heart, we were able to put off his birth week after week.  Finally, at 38 weeks, the maternal fetal specialist discerned that Luke had quit growing, and that he would grow much better outside the womb once we could get his heart repaired.  We were amazed that Luke made it to full term.  We had to deliver him C-section because he was not tolerating labor well at all.  He was born the evening after Mother’s Day.  I was not able to hold him before they whisked him away to the ICU, although I got to give him some kisses. That night they put him on a ventilator.  While his heart problems were very evident, they were having a difficult time understanding why he was having so much trouble keeping his blood oxygen at an acceptable level.  A CT scan done his second week of life revealed that Luke was only using 2/3 of one lung.  The other 1 and 1/3 of his lungs had not ever inflated.  Luke’s heart was so large due to his heart defect that it had crushed his lungs.  The lung tissue was there, the doctors just weren’t sure if it would be able to inflate.  We were unprepared for the severity of Luke’s lung issues.  We asked our prayer warriors to pray that God would somehow inflate Luke’s lungs.  Just a few days later, Luke’s oxygen saturations began to improve.  The doctors never told us that they thought Luke’s lung had inflated, but David and I were confident that we had seen another miracle.  By the time of Luke’s first heart surgery, four weeks after his birth, the surgeon reported that both lungs were inflated and moving air. 
            The day of Luke’s first surgery marked the beginning of the darkest days that we’ve ever experienced.  It would be hard for me to tell you in the time I have today just how difficult the next sixteen weeks were for us.  Luke’s surgery was successful in making the first and most complex repair on Luke’s heart.  However, even during surgery, Luke started to struggle with heart rhythm.  On the elevator going up to the ICU for recovery, his heart arrested for 27 minutes.  It was a miracle that his heart surgeon was in the next room preparing for his next patient when this happened, because he was able to save Luke’s life.  They put Luke on a machine that did the total work of his heart and lungs for two days allowing his heart to rest and heal from surgery.  After two days, Luke developed bleeding into his brain, which meant that ready or not, we had to take Luke off the heart/lung machine.  This was a very critical time for us.  Luke’s heart either had to take over the work for the machine, or he would die. 
Luke survived, but the combination of the cardiac arrest and the use of the heart/lung machine tipped over the first domino in a long chain of problems.  We discovered that Luke had stopped making urine, and his kidneys stopped regulating his electrolyte levels.  The doctors told us that Luke had gone into kidney failure, and we were forced to put him on dialysis.  Then x-rays started showing that Luke’s intestines were no longer processing and absorbing food.  For weeks we waited for Luke to digest food.  The morning after Luke had gotten off the heart/lung machine, he started having seizures, and we were very fearful of brain damage.  Soon after that, Luke’s heart went into a stubborn arrhythmia which showed no improvement with medication.  These events happened one right after the other, so it felt like a train hit us every time we were able to rally our strength to face another issue. It really seemed like every morning when we arrived at the hospital, something else had gone tragically wrong over night.  Any one of these things by itself would land a baby in Intensive Care, but we were dealing with all of them at once.  We spent 11 weeks on the Congenital Heart Surgery Unit while our doctors brought him out of his organ failure, fought off multiple infections, and got his heart rhythm under control. 
            All during this time, Luke had been on a ventilator.  Several times we worked on weaning him off of the vent, but each organ failure and each new infection knocked us back weeks on that front.  Finally Luke was stable enough for them to try to take him off the ventilator completely and try breathing on his own for the first time since the day of his birth.  He failed each trial they put him through to try and breathe on his own.  After a few weeks of this, one of our doctors suggested that an Ear Nose and Throat specialist look down Luke’s airway to check for problems.  We got bad news once again.  Luke’s heart had been so huge from the defect that it squashed not only his lungs, but also his bronchial tubes and trachea.  The airway tissue was floppy and would not stay open for Luke to breathe without the positive pressure of the ventilator.  We then were faced with two choices.  We could either let Luke continue to stay in the hospital for weeks, months, or even years while his airway strengthened and hardened enough to let him breathe without a ventilator, or we could choose to have a tracheostomy done on Luke and go home with a trach and a ventilator.  For those of you who have never seen a trach before, it’s a plastic tube inserted into a hole in the throat.  It allows the person to bypass breathing through the nose and mouth.  In Luke’s case it decreased the negative pressure on his lungs, allowing him to breathe much easier. 
            We were so discouraged at this point.  After months in the hospital, we had been so eager for the day we would hear that we could take him home and leave the hospital nightmare behind us.  Taking Luke home with a trach and a ventilator was a pill we almost couldn’t swallow.  We rallied our prayer warriors again, asking them to pray for God to miraculously heal Luke’s airway, just as he had inflated Luke’s lung.  Another week went by and Luke’s breathing did not improve.  We felt that our only option was to go ahead with the tracheostomy.  When Luke was almost 3 months old, he got his trach.  At the same time, the doctor placed a permanent feeding tube in Luke’s stomach so we wouldn’t have to wait for Luke to learn to eat before we could leave the hospital. 
            Our next step was Luke’s five-week stay at Our Children’s House at Baylor while we learned to take care of our son and while Luke’s Medicaid was approved to pay for all the equipment and services he would need at home.  This was a big adjustment for our family.  When we were in the ICU, at the most, Luke shared his nurse with one other patient.  He received almost constant attention, and we were usually confident to leave Luke with his nurses and go home each night.  At Baylor, it was a big change for the nurses to cover several patients at once and to remain down the hall unless they were paged.  Luke still needed constant attention, so his parents took over.  Since one of us needed to stay with Luke around the clock, the other one of us was either working or sleeping.  David and I hardly saw each other during the week.  Our parents were so helpful in staying overnight with Luke on the weekends so David and I could spend a little time together.  Although we had some visitors, I think back on that as the loneliest time in my life. 
            Finally, on Sept 29, the day came when we got to take Luke home for the first time.  He was four and a half months old.  It took awhile to get adjusted to having Luke home along with all of his medical equipment and supplies and the 24-hour home nursing.  We were used to having no privacy during the day at the hospital, but it was a big change having a relative stranger in our house around the clock.  We began to settle into a routine though, with feeding therapy, occupational therapy, and at least one doctor’s appointment each week.  Luke was making progress in most areas.  By Christmas time, he was only using the ventilator at night when he was sleeping. 
            In January, our cardiologist told us it was time to start gearing up for Luke’s second heart surgery.  When Luke was 8 months old, we took him back to the hospital for a heart catheterization procedure.  Luke had already had two of these during his first hospital stay.  We needed another one to gain information for doctors to know what kind of surgery was required.  We expected just an over-night stay for observation after the test, but Luke caught a very serious virus called CMV.  Luke stayed in the ICU for 10 days and then they released him, much weaker than he was before.  24 hours after we got home, we turned around and went to the ER because Luke was still suffering from symptoms of the virus.  That was our scariest trip to the hospital.  Luke’s oxygen got so low that he was blue, and he started seizing.   I had to give Luke oxygen and breaths with a resuscitation bag while David sped to the hospital.  Luke was readmitted to the ICU for another 5 days.
            Our cardiologist wanted to give Luke several weeks to fully recover for his next heart surgery, but by the beginning of February, it was evident that he couldn’t wait any longer.  Luke returned to the ICU two weeks after his battle with CMV to await heart surgery.  He was slated for surgery five days later.  That weekend, we got another miracle.  It became evident that Luke had another infection.  The infection wasn’t the miracle, but finding out about it when we did was.  If they had taken Luke down to the OR with a hidden infection brewing, he would have most probably died of complications after the surgery.  For four weeks, we waited for Luke to be healed from pneumonia so he could have his surgery.  He spent most of that time in an induced coma so he wouldn’t spend his much needed oxygen moving around unnecessarily.  At one point, the doctors were concerned that they might have to put him back on the heart/lung machine because his heart was not working efficiently to give his body enough oxygen.  We thankfully didn’t have to go down that route.  Luke was finally able to have his surgery on March 1st.  We were relieved to discover that almost all of Luke’s complications came before surgery this time.  We were able to leave the hospital 10 days after his surgery. 
            Throughout the next week following our return home, Luke was sleeping almost all the time.  He was very lethargic and fussy when he was awake.  About a week after we got home, we called the physicians at the Medical City ICU to help us decipher his symptoms.  We were worried that Luke had gotten too much of his pain medication, but by that evening, Luke was having muscle spasms and his eyes were rolling back into his head.  We ended up taking him back to the ER in the middle of the night.  We discovered that Luke’s sodium level was extremely low.  We were told that if his sodium had dropped to that level quickly, he would have died.  It was a miracle that he wasn’t having seizures.  God was with us in that Luke’s sodium had dropped gradually over the course of the week.  God gave us wisdom to help us decided to take Luke back to the hospital.  Luke stayed in the ICU another 10 days while the doctors figured out that his diuretic medications were causing his body to dump sodium instead of absorb it.  Once we understood that, we were able to adjust Luke’s diuretics and give him a sodium supplement.  We took him home soon afterward.
            I want to go back and spend a little time talking about what I think is the most amazing miracle we have witnessed concerning Luke’s health.  Just after his first heart surgery, Luke began having heart-rhythm issues.  His heart rate shot up to right around 200 beats per minute, and the rhythm was irregular.  Remember, several of Luke’s organs had gone into failure due to his cardiac arrest and being on the heart/lung machine.  This arrhythmia was constantly messing with his blood pressure and the way blood was delivered to the rest of his body.  It was causing his organs to not be able to heal.  For five weeks, Luke’s arrhythmia stumped the doctors.  Nothing they tried could regulate his heart beat.  The longer Luke remained in this state, the more worried our doctors became.  They worried that his organs would not heal, and more systems would begin to fail. 
            They finally decided on three options.  First, they maxed out two heart-regulating medications to try and budge the arrhythmia.  These medications failed to do their job, as they had for weeks before.  The second option was a new medication which could only be given orally.  Although we tried to get Luke to absorb food through his stomach, his bowls were in failure, and he repeatedly rejected everything he was given.  The new medication option failed us too, because Luke couldn’t absorb it at all.  Our last option was a dangerous procedure called an oblation study.  A doctor would send a wire into Luke’s heart, poke around and try to find whichever node was misfiring on Luke’s heart causing the arrhythmia.  He would then burn the node so it wouldn’t work anymore, and the other nodes would tell the heart to beat correctly.  This procedure is risky on adults, but it’s practically unheard of as an option for a baby as small as Luke was.  We were told that the procedure had about as much of a chance of killing Luke than it did of solving the problem. 
Once again, things looked extremely bleak for our family.   We again called everyone to prayer, to ask God for another miracle.  One night, when things were at their darkest, one of our favorite doctors came into Luke’s room.  We were ready for a conversation about solving Luke’s problem, but instead, the doctor called us and the nurse to Luke’s bedside and announced that he was going to pray for Luke.  All four of us laid hands on our precious baby as the doctor prayed.  He acknowledged that they didn’t know how to heal Luke’s arrhythmia, but that he was confident that God knew.  He asked God for wisdom for the doctors and healing for Luke. 
We got our answer the next day.  The doctors decided that Luke would go down for another heart catheterization, just to see what kind of damage Luke’s heart had from the long term arrhythmia and to see if they had missed any details of his condition that would lead to a solution.  After the heart cath was over, the doctor who performed the procedure explained to us that he had accidentally bumped the heart wall.  He assured us that Luke was okay, and in fact that his heart rate was currently in the 130s, down from the 200s, although he didn’t expect it to stay that way.  When we returned to his room and met with Luke’s cardiologist, the doctors had discerned that Luke’s heart had converted to a rhythm that they could shock him out of, whereas shocking would not have affected the previous arrhythmia.  David and I watched from outside the door as they yelled “Clear!” just like on TV and shocked our nine-week-old.  When it was over, we knew we had received our miracle.  The heart cath was not supposed to be corrective, but God used the mistake of a doctor to heal Luke’s arrhythmia. 
So what about faith through this long journey?  At times it seemed that we didn’t have any choices.  We simply assented to whatever treatment the doctors presented to us.  Sometimes it seemed much like a terrible train ride, where we just went where the track took us.  Throughout my pregnancy, Luke’s birth, his lung and airway issues, surgery, organ failure, and arrhythmia, we prayed God would intervene and heal our son.  We had faith though, we knew without a shadow of a doubt that God has been there, in control, the entire time.  There’s a passage out of Daniel 3 in which King Nebuchadnezzar demands that Shadrach, Meshach, and Abednego bow down to his statute, or he would throw them into the fiery furnace.  The three young men refused to bow down.  They told Nebuchadnezzar that even if he threw them into the furnace, they knew that their God was able to rescue them.  They said that even if God did not save them, they would not bow down to the statue.  They would serve no god but their own.  This story stands out to me as a summation of our resolve through Luke’s most trying times.  We had strong faith in God’s unshakable mercy, love, and power.  We knew that God was able to heal Luke completely, but even if he did not, even if he took our son from us, we have been able to say that we will serve no god but him. 
            So where are we now?  About a month after Luke got home from the hospital after his battle with sodium issues in late March, he really started excelling.  He was well enough to travel to Albuquerque for my sister’s wedding where our New Mexico prayer warriors got to meet him for the first time.  At the end of June, we were finally able to wean Luke completely off the ventilator and regular oxygen.  In July we were able to start Luke with intensive physical therapy twice a week.  This past summer, Luke was not even able to sit up on his own or roll onto his tummy.  Now he’s crawling and cruising, and getting closer every day to walking on his own.  We’ve also made some serious progress with Luke’s eating.  Learning to eat has been extremely slow and difficult for Luke.  He has worked up to eating about 2 oz of yogurt every day. 
            Even though Luke was able to get off the ventilator completely in June, we have constantly battled with airway issues.  Before we can get rid of his trach, Luke has to be able to breathe all the time with it capped.  That just means that we cover the end of his trach, and Luke has to breathe in and out around the trach through his nose and mouth.  In the last several months, Luke has had three broncoscopies in which the Ear Nose and Throat surgeon sends a camera down to look at Luke’s airway.  The “floppiness” of his lower airway is resolved, but now we are facing soft tissue and a very narrow upper airway.  This narrowness is stopping Luke from being able to breathe with his trach capped, and thus delaying us from getting out his trach completely.  In April we have another broncoscopy scheduled to help us find out what type of surgical correction Luke needs in order to breathe without a trach.  It’s very possible that Luke will have to have a complete airway reconstruction.  If this is necessary, it is scheduled to take place in early May, just before Luke’s second birthday.  If all goes smoothly, we hope to have his trach out by mid-July.  We then have one more planned heart surgery, and Luke should be done with surgeries.  We will continue to have physical therapy, feeding and speech therapy, and occupational therapy until Luke has completely caught up to age-appropriate development. 
            It has been a terribly long and difficult journey.  We have miles to go before we can really say “It’s over.”  Through all of this we have learned just how near God’s comfort is.  We have learned a great deal about God’s sovereignty as well as the intense love he has for each of his children.  We have learned about the power of prayer and the value of asking God to intervene when a situation seems utterly hopeless.  This journey has so far been long and extremely painful, at times very lonely.  But if even one person discovers faith in God because of hearing our story, we believe that it has been worth it. 

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