Third Time is a Charm (Or so the Saying Goes) PART 1 OF 3

Posted: December 13, 2010 in Family
Tags: , , , , , ,
My wife and I on our Wedding Day

        There are instances in our lives when we are devastated by tragedy, overcome by grief or just plain overwhelmed by the circumstances of life. Every once in a while we can catch a glimpse of hope from others which fuels our desire to rise above the situations we often find ourselves in. This is a story, a family’s story of how they overcame three very unique circumstances involving the health and livelihood of their children. This is my family’s story.

     One of the most exciting moments of our marriage, next to getting married of course, was the birth of our first son. The anticipation leading up to this moment was like nothing we had ever felt or experienced before. A blitz of emotions came and went as this newfound responsibility became closer and closer to a reality. I was nervous, excited, scared and happy among a host of other emotions which are both too many and too complex to address here.

        We decided to have children very early in our marriage, but it took over a year for my wife and I to conceive. Our hurried attitudes and impatient mindsets led us to go through the process of making sure we could have children and thus began looking into the possibility of utilizing fertility drugs. We made the decision to try fertility drugs and almost as soon as my wife started taking them, we discovered she was pregnant. The first part of the pregnancy was very typical in terms of your normal status quo pregnancy; however, during the third trimester, my wife developed pre-clampsia and retained large amounts of water. Her blood pressure spiked to dangerously high levels during this timeframe as well. The safety of my wife and our first child was in jeopardy which meant this baby needed to come sooner than later.

        The doctor scheduled an induction for the eighth of July, 2002. We kept our fingers crossed for a fourth of July baby, but the date came and went without a bang. We experienced this tremendous build-up of both anxiety and a fear of the unknown going into the induction process and expected to go home with a baby; however, the induction failed. We were sent home after spending just over a day in the hospital only to come back a day later and start the process all over again. My wife’s situation became more alarming as the failed induction caused her to gain yet even more water weight. My wife’s health and the health of the baby edged towards critical as the doctor’s tried one last medical procedure before attempting a C-section delivery. The medical procedure worked and the hospital staff went into full fledge delivery mode.

        The second time around did the trick. On July 11, 2002 our oldest son Blake was born. I remember being in the hospital room and feeling as if I was torn between staying by my wife’s side, who was in distress and going to see how our new baby boy was coming along. I also remember this rush of adrenaline and emotion that overcame me. I was like this giddy little school kid who just received the coolest present on earth, except the stakes were much higher. I was still very concerned for the safety and health of my wife who through the process of delivering Blake, lost almost half of her blood supply and had the doctors considering a blood transfusion.

        Taking all things into consideration, the time immediately following the birth seemed like a stereotypical delivery. The baby was born, mom holds baby (almost stereotypical), actually I was the first to hold Blake as My wife did not feel well enough, numerous visitors came and went and two days later we were on our way home. The trip home and our walk through the door for the first time as a family was a new experience. We marched those steps and treaded through that door thousands of times before, but there we were entering a house that to us, felt like a brand new home. This house we once called home as a husband and wife was no longer just for the two of us; however, it transformed into a home for our entire family (OK, OK, the three of us).

        We were home a mere 10 days and we noticed our son was not eating well. He started throwing up the majority of his feedings which concerned us, but that alone was by no means a resounding alarm to take our son to the doctor. When I look back in hindsight we were very naïve about Blake’s breathing patterns. We even have it on videotape where we thought Blake was bobbing his head up and down (remember that he is only ten days old here), but in all reality, his heart was failing and what we thought was bobbing, was actually labored breathing due to a lack of oxygen in his red blood cells. The throwing up turned into projectile vomiting at which point we decided to take Blake to the doctor. We didn’t have a clue of the severity of Blake’s condition so we took him to our family practitioner first and with the subtle placement of our doctor’s stethoscope on Blake’s chest, he calmly instructed us to take Blake to the emergency room immediately. We now had a newfound anxiety and a different kind of fear creeping over us.

        Upon arriving at Children’s Mercy Hospital I carried my son into the waiting area of the emergency room. My wife and I approached the check-in desk and apparently our doctor’s call preceded us as the hospital staff was expecting our arrival. We were immediately taken back to a room where the medical team began checking Blake’s vitals. The oxygen level in his red blood cells was fluctuating somewhere between 78-84 percent and the medical staff informed us that they needed to start him on oxygen immediately as his current oxygen levels were dipping below 80 percent (These low oxygen levels over a given period of time can lead to permanent brain damage). I remember the feelings of helplessness which overcame me. I mean, I’m supposed to protect and fight for this little guy, but I couldn’t do a darn thing.

     The doctor informed us they needed a chest x-ray which prompted a visit from the on-call cardiologist. I remember fixating my eyes on Blake’s oxygen levels and watching them as if I was a hawk watching his prey. I watched them go up and I watched them go down and with each peak and each valley; my emotions followed this up and down rollercoaster. Once the cardiologist arrived, she sat down with us and uttered a short series of words that completely rocked both of our worlds and turned them upside down like nothing we had ever experienced before. She explained that our son had an enlarged heart and he was in congestive heart failure. A mere 12 days earlier we shed tears of joy in response to the birth of our son, but now our tears of joy were turning into a pool of sorrows and our hopes for a future with our son was diminishing quickly. We didn’t even know exactly what was wrong just yet, but this was definitely unchartered territory for us. It was at this point that my wife and I looked at each other and we both lost it. I can honestly say that I have never shed such genuine tears of desperation. We were as close as two people could possibly be on that day, in that hour and in that moment as we cried together. Our foreheads pressed together as we embraced and the tears streamed down our faces. I remember crying out to God, “YOU CANT TAKE HIM AWAY FROM US; YOU JUST GAVE HIM TO US”!!! The self-pity sank in as I questioned every move to God and I tried to make sense of this mess that we were in; however, I needed to pull it all together somehow. My wife and my son needed me to be there and to be strong for them.

        In order to diagnose exactly what was wrong with Blake’s heart, the cardiologist needed to take a closer look. She ordered an ECHO Cardiogram and shortly thereafter, the ECHO cart arrived and ultimately confirmed what the doctor had said earlier; our son was in congestive heart failure. He was diagnosed with coarctation of the aorta (COA) and a bicuspid aortic valve (this was actually diagnosed at a later date) and the COA needed immediate attention. Our son desperately needed to undergo life saving surgery or he would die. His heart would work so hard at trying to sustain life that if left untreated, the muscles would give up and stop beating altogether.

        Blake had eaten prior to our trip to the emergency room so he wasn’t able to immediately go into surgery. The hospital staff wanted to stabilize him and make sure he didn’t have anything on his stomach for at least 12 hours. This was almost as excruciating because we had to sit there in the hospital room and listen to our son cry to the point of hyperventilation because he was hungry and we couldn’t feed him. My wife couldn’t stomach the idea of listening to her son undergo this torture like treatment, but me, I couldn’t bear the thought of leaving him should something go wrong. I thought I was being valiant at the time, but I was just afraid. I was afraid that I might never see my son again.

        The next day was the big day and I didn’t get much sleep due to Blake crying almost the entire night. Blake’s surgery was early in the morning and I think I played every possible scenario out in my head, both good and bad. I remember carrying Blake down for surgery. I felt like I was in a movie as we traversed down the long restricted area corridors of the hospital. With each swipe of the nurse’s security ID badge, another door would “CLICK”, opening automatically and with each door that we passed through, we became closer and closer to the operating room. We arrived at the entrance to the operating room at which time our immediate family members were asked to part ways and head to the operating room waiting area. We went back to the prep room with Blake and waited for the nurses to provide us with further instructions. This entire area of the hospital looked like a set for a movie scene, but I think this was due to 1) the unfamiliar environment we were in and 2) my inability to fully grasp the situation in its entirety at the time so I sub-consciously kept thinking on the brink of reality. We stayed with our son as they started prepping him for surgery and then we were asked to join our immediate family members in the waiting area. I hardly took my eyes off him as we walked away. Would this be the last time we ever saw our son alive again?

Getting Ready to Give Blake to the Surgery Team

        The time we spent in the waiting room was approximately 4-5 hours. We received a couple of updates along the way which seemed like lifelines as our patience thinned and our nerves were on the verge of collapse. We were surrounded by family, friends and our pastor during this time, but I didn’t feel like doing anything. I had no interest in reading and I definitely didn’t want to talk to anyone. My mind was completely preoccupied with the thought of our son being on the operating table and his life was looming in the balance of someone else’s hands. We finally received news that our son had made it through surgery and was in stable condition.

        We moved from one waiting area to the next which was the waiting area for the Pediatric Intensive Care Unit (PICU). Once we received word that we could visit our son, we went back to the PICU and saw him for the first time since handing him off to a stranger earlier that same day. Blake was unconscious from a medically induced coma. He was starting to respond to external stimuli, but we were told to limit our interactions so as not to get him over-stimulated. The pain medication was making it difficult for Blake to wake up during this time. The one thing that really caught our attention was that Blake did not even look like the same baby prior to going into surgery. The next eight days were the eight longest days of our lives (at least up to this point). We were grateful and relieved to see our son again, but we weren’t out of the woods just yet.

Blake in the PICU

        As previously stated, Blake had a very difficult time early on  in the PICU. He retained a great deal of water which permeated every part of his body including his eyelids; He could hardly open his eyes once he began to come to. Blake was on multiple medications to help regulate his heartbeat, water retention and pain management. Gauze bandages and medical tape was everywhere and tubes protruded from multiple parts of Blake’s body. His body sprawled across an incubator bed and while he wasn’t lifeless, he sure looked lifeless to us. We placed the following verses from a song at which time we thought was an anonymous poem just above his bed;

 

 

  “Sleep sound in Jesus my baby, my dear,

Angels are watching they keep you so near.

Know for His sake you’ll be safe for the night,

Sleep sound in Jesus, I’ll turn out the light.

 

Sleep sound in Jesus, sweetheart of my heart,

The dark of the night will not keep us apart.

When I lay down in your bed for the night,

He holds you gently till morning is light.

 

Sleep sound in Jesus, the angels are here,

They’re keeping watch so there’s nothing to fear.

Against any foe they are ready to fight,

So sleep sound in Jesus, I’ll turn out the light.”   

Blake in the PICU after surgery

     The nurses started to bring Blake out of his medically induced coma and prepared to take him off the ventilator. Blake had a difficult time waking up and this part of the process took longer than normal, but at this point we were just relieved to find out he was finally going to wake up and get to see his mom and dad again. Once Blake was awake, the medication began helping with the water retention and the doctors weaned him off the ventilator. Once Blake was off the ventilator, the hospital was able to move Blake from the PICU up to a hospital room on the fourth floor.  

     Our short time in the PICU exposed us to many different situations. On first arriving to our son’s PICU room there was a couple diagonal from us who’s baby’s chest was left open, the only thing protecting the child’s chest cavity was a piece of surgical plastic draped across the child’s body. The chest cavity was left open so the doctors wouldn’t have to reopen the chest for another surgery. Another child was life flighted in from out of state to be treated for some sort of infectious disease. At that given point in time, we were more upset that this baby was roomed right next to Blake and that our nurse was subbing in to help out. We watched this same baby leave the hospital in a wooden box and to think that each of these life-saving and life-ending moments take place every day in this hospital is both uplifting and gut-wrenching at the same time. I know several people who have lost a child in very similar situations and if you have lost a child and are reading this, my heart goes out to you. Our thoughts took us to that place many times during this whole experience. My thoughts, my prayers and my love goes out to you.

     People take away different learning experiences from different circumstances and even different people take away different learning experiences from the same circumstances. All in all, every moment in life presents us with an opportunity to choose and an opportunity to learn. I learned that in this life, there are circumstances beyond our control and that I can either fall into a pit of self-pity, remorse and despair for something I have no control over to begin with or I can accept the circumstances for what they are and figure out how to get through them and overcome the adversity which lies before me .

     Blake is eight years old today and is clear to do just about any activity he likes. He still has yearly check-ups with his cardiologist at Children’s Mercy Hospital to make sure his coarctation repair is holding; however, Blake’s coarctation has begun to show signs of re-coarctation and he will more than likely require surgery again in the future, as well as a possible valve replacement in the long term future, but for now, I made two promises to Blake and myself when my son first went into congestive heart failure;

Blake and Dad at the Heartwalk 2009

1) Never ask for a day ahead of where I am right now – This means no statements like I cannot wait until you can walk or talk or when you’re 18 and can move out of the house, etc.)

2) Don’t ever take a single day for granted.

     In closing, some people, myself included, want to place the blame on God in these situations and while that was my initial reaction, we live in an imperfect world where we are sometimes the victims of chance. Matthew 5:45 says, “so that you may be sons of your Father who is in Heaven; for He causes His son to rise on the evil and the good, and sends rain on the just and the unjust” (NASB, 2000). This imperfect world does not discriminate and cannot discriminate if free will is to be maintained and even though I don’t always understand God’s plan, I accept what has happened to me. I choose to love and worship God through the most difficult of these circumstances, just as He has chosen to love us through good and evil, through our justices and injustices as Matthew 5:45 states. We must make the choice to use what is normally considered a tragedy and allow miracles to come forth in the form of triumph and healing, even if the healing is not always the healing we are asking for, sometimes the healing does not come in the form of physical healing and sometimes it does, but these moments are often superseded by a spiritual healing instead. Sometimes God has to heal our hearts.

My Wife, Blake and I on Vacation in New York 2010

 …..To Be Continued

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Comments
  1. Jason says:

    Josh, an amazing story — glad you captured it here, and thanks for sharing.

  2. Tammi T. says:

    Thanks for sharing your story. I found out by following the comment you made on Bowensheart.com. We have a son with HLHS. It is so encouraging to hear the testimonies of how God is using what is “broken” and molding it/us for His glory. We have another son who is the same age as Blake. It will help me to remember to keep your son in prayer, too.

    • Hello Tammi,

      Thank you for taking out the time to visit and read my blog. I had to do something with the experiences our family has had with our three boys. I know several families that have children with congenital heart defects as I am part of group here in the Kansas City area called CHDFamilies. Check them out on the web sometime if you have a chance. Also, keep an eye out for the next two parts as I tell the story of our son Cooper and Gavin. The totality of the three events truly reveal God’s power to move us through and beyond the moments we find ourselves in. What is your son’s name with HLHS so that we can be praying for you and your family?

  3. snydertime says:

    Thanks so much for stopping by my blog & leaving a message! I, in turn, just had to read your own blog. I enjoyed reading about Blake and your experience with CHD. I can tell that you enjoy writing, as do I! It’s sort of therapy for me. I’m not a very vocal person to complete strangers, but can communicate in writing forever!

    I look forward to learning more about your other 2 boys. I am relatively new at blogging, but the internet has been my life line into the CHD world since 2004 when I figured out Care Pages, which is a type of blog I suppose. I can’t even remember how I came across it, but I have “met” so many other moms & dads and they sustained me through my darkest times and answered so many questions that the doctors never discuss. I still have a few of them that their heart kids are older or around the same age as Kaston and we are able to compare notes, ask questions, offer prayer and support for all things in life, celebrate milestones and shed tears of sorrow when another one dies.

    I understand that not all folks are not this way and when dealing with something like this, everyone is different. For me, it’s exactly what I have needed for 6 years! My husband, not so much! Don’t get me wrong, he’s the most wonderful husband, father & best friend, he’s just not a big talker like me! So it’s nice to be able to communicate with other people out there about our CHD kiddos.

    I encourage you to keep on writing and blogging, because time fades memories. And I think these memories, feelings and experiences are vitally important to our children’s legacy.

    May you have a blessed Christmas & I look forward to your next post!
    Jamie
    Amarillo, TX

  4. Hello! I just found your blog from the comment you left on Alys. You are an AMAZING writer! I was so drawn to your story- I felt like I couldn’t read it fast enough. I’m so happy to hear your son is doing well and I look forward to parts 2 and 3. 🙂 Welcome to blogging, isn’t it fun? 🙂

  5. Thank you for sharing….I had no idea how prevalent CHD is untill I had my daughter. I agree with Jamie and need to take her thoughts to heart….I need to write more of a blog/journal than I do on my daughter’s carepage. Thanks Jamie and Thank you Josh

  6. Jill Haskins says:

    Hi Josh,

    Just stopping by from Bowen’s Heart. Your name stuck out to me because my son’s name is Joshua Haskins and he had HLHS. He was 51 days old when he went be with Jesus.

    I just read your story about Blake. CHD is such a nasty and unpredictable thing, and I’m so thankful that Blake has survived and is doing well.

    Nice to “meet” you! I’ll be checking back! :o)

    Jill

  7. Wow! Your story totally blessed me. I can’t wait to read part 2. Thanks so much for sharing. I feel like I can relate in so many ways although our situation is much different. I feel your “parent’s heart”.

    • Stacey,

      Part two is up whenever you have a chance. Our situations are much different as ours for the most part was very acute and you guys are experiencing a chronic battle with Jeriah’s health issues, but we are both parents experiencing hardship and challenges with our children’s health. Thank you for reading and thank you for commenting as well.

  8. Lisa Raney says:

    Your story of God’s love and faithfulness is inspirational. I had no idea that you had gone through this. It is always amazing to me to meet people who seem “ok” on the outside, then once you hear their story you find that everyone experiences trials . . .and God always shows up!
    Thanks so much for sharing for sharing your story. It really blessed me.
    Lisa

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