Today....

Where to even start?  These days are never good for me.  The days when the memories are crystal clear.  I cried on and off all day and am getting particularly good about hiding it.  On these days, I try my hardest to focus on what I need to be thankful for.  I’m thankful that I met Jonah.  It should have never happened. Dr. Michi shook his head and told me point blank – he didn’t know how Jonah was here.  No matter how short our days were together, many parents never get a day.  They never see their child wiggle, open their eyes, pucker their lips, and smile.  They never touch their pink skin or feel the warmth of their breath.  I’m thankful for the amazing miracle I witnessed.  Many times in my life, I have jokingly said, “it’s a miracle!” Or we’ve praised God for a miracle that we witnessed from a distance via friends and family.  I touched a miracle.  I held a miracle.  I’m thankful for God’s healing.  I know that’s shocking for a grieving mother to say.  God healed Jonah.  He didn’t heal him the way I had asked, night after night, in my prayers.  But He healed Jonah. On our last night, I asked for God’s will to be done in Jonah’s life and I begged him for a healing, regardless of the manner (it was the most unselfish moment in my life.)  I never even fell asleep after prayers before I was told to come hold him.  Jonah’s heart is completely whole now.  And for that, I am thankful.  I’m thankful for all the people Jonah brought into my life and for the friendship’s he solidified.  Forever and always, I will be grateful for the many people that were there for us, at all hours. 

I was reading a story, about a child asking his father, after the death of a young relative, why good people die too soon in their life.  The father made a sweet point. He said “son, if you were looking at a field of flowers, you’d only pick the prettiest ones.”

God bless you all and thank you for the support these past 5 years.

Goodbye.....but not really.....

It’s been almost five year and grief will still paralyze me.  I become trapped in it and I have to wait for it to pass.  Car rides were always the worst.  Alone. Music. Thoughts. And of course, tears.  It happened twice this week.  I find it unbearable to loose people in my life. Even for a temporary goodbye. Even if it’s just for four weeks. I didn’t want to leave my classmates.  And it’s not for four weeks, it’s longer than that.  We’ll be in clinicals all summer, away from each other. In August, we’ll be completely separated.  I’m sensitive to goodbyes. I despise them, even under the best of circumstances.

I cried at lunch with a few of my classmates.  We started talking about the Heart Walk, innocently enough.  I was laughing about Dr. Dyamenahalli on the tricycle, Dr. Eble’s dancing skills (or lack, thereof.)  Then I went into the last conversation I had with Dr. Dyamenahalli.  I hadn’t seen him in several years and he wasn’t one of my favorite doctors, by any stretch of the imagination.  You either like him or you don’t – there is no in between.   I’ve always been honest about my feelings toward him. But he was there with us.  Therefore, he mattered.  Try as he may, he always seemed a little less human to me.  He was emotionless and methodical.  One evening, after realizing I hadn’t seen my sweet baby awake since we’d left Ft. Smith,  he turned off all the lights, closed the curtains and attempted to wake Jonah up.  It worked.  And he earned a few extra popularity points in my book.  We would disagree from day to day but not as much as a certain other doctor.  I would pick my battles with him.  He was the doctor that had sat us down to tell us the end was near.  I was angry at the time.  I was resentful toward him.  I was letdown by the entire situation on so many different levels.

At the Heart Walk, he became human to me.  He was kind, sincere and quirky.  He was also gone.  He was leaving for Chicago.  Our first conversation in years was essentially our last.  He brought me to tears back in 2009, and our conversations can still bring me to tears today.  I’m glad he was at the Heart Walk.  Aside from Dr. Eble, he was the other constant in our Children’s stay. For the chance at this goodbye, I am thankful.

(However, I’d still take a big HELLO over any goodbye!)

While I should be studying.....

I wrote this blog back in December when this all played out.  At the time, I couldn’t post it….for many reasons, the pain and fear in our family was too fresh and the need to protect her privacy as she dealt with everything.  Now, I had to read it to remind myself again….it will all be okay.

            Every semester, at the beginning, I stress.  Is this worth it? Is the sacrifice (for my family) worth the education (for me)? I weigh my options. I lose sleep.  Will my kids be okay without me around as often? Is the financial burden I place on Jason worth all this? I stress on an enormous scale.  Panic, almost.  It’s a profound time for me.  I’m not really sure why? It’s inevitable.  I’m not quitting.  Everyone around me knows this but I have to let the stress and panic play out.  I still ponder every option.  God always brings me back to the center. The very center.  He would have not taken me on this journey to watch me back track or find an escape route.  No.  This weekend was no different.  School is approaching.  The next 8 months, I will be traveling a lot which will put an additional strain on my family, my kids, my marriage and my bank account.

Of course, I needed one more thing to add to my stress level.  My car started making a strange racket.  I need this car.   I didn’t have time for a car to be out of commission.  I sure didn’t have the financial resources to completely replace my transmission.  Of course, that’s what I imagined in my crazy stressed out head.  A small clatter turned into my transmission completely dropping out of my car…in my imagination.  Not the good kind of imagination that SpongeBob sings about while forming a rainbow over his head.   The bad kind of imagination that Murphy’s Law talks about: if anything can go wrong, it will.  It can. It should. At the most inopportune time.  And it will be all your fault. And everyone will know it.

It was stupid on our part to not plan for a transmission completely crashing but we didn’t.  My stress level was exaggerated beyond even my imagination.  I had to get books, a drug screen, and a background check for my next clinical site.  And to top it all off, I had abandoned the treadmill.    Who could exercise at a time like that?  My mountain of stress was building.  But on Sunday morning, in the midst of my self-created chaos, my phone rang.  It was my brother.  My brother rarely calls me.  Texts, Facebook – yes, but a phone call?  Rarely.  He started the conversation with a quiver in his voice, “I don’t have good news, Wendy.” Just great, I remember thinking.  But no, he was right.  He didn’t have good news.  He might as well have called me at 2 in the morning.  It felt like that kind of call.

And in that instant, I remember thinking, “you are an idiot, Wendy.” I hung up the phone and cried for my brother and his family.  Years ago, when we lost Jonah, I remember understanding what it means to be grateful for everything.  Everything. It can be ripped from you so quickly.   I remember not sweating the trivial things.  There were real tribulations out there – I was going through the largest of those when I held my child as he took his last breath and as we had to see him lying in his casket. My prayers were simple then – God, you get me through this, and I’ll be able to get through anything. Four and a half years later, I still have to vocally remind myself of that.  I still forget.

I can’t remember the exact quote or who said it but I have to remind myself – the things you take for granted someone else is praying for. And one of my personal favorites is an Indian proverb, “I cried because I had no shoes, then I met a man who had no feet.”  Yes, many people would love my simple stress.  It took one phone call for me to remember to give it all to God.  He carries our burdens for us.  I sought out 1 Peter 5:7. Cast all your anxiety on him because he cares for you.

I had to look at my instruction manual to ease my crazy mind.

 

P.S. It never was the transmission.  It had something to do with a “belt.” Cost us a miniscule amount to fix. 

And here's the rest of the story....

This is the best place to tell this story.

Many of you know my husband. And those that don't, just pretend you do. He is hilarious on most days. He provides hours of endless entertainment for myself and our children.

We live on a spacious piece of land where my hubby has no less than 6 tree stands, two feeders and two game cameras. He's an avid deer hunter, if you get my point. He relishes in the hours he spends sitting this stuff up throughout the year on the hunt for the big buck. Big Daddy. Now, he didn't get the buck of all bucks. That's not my point. He has spent countless hours, sitting and sleeping, in his tree stands. Countless. This particular morning, last Saturday, he had spent about 4 hours. The hours are too many to count that he spends scanning through his some 500+ pictures tracking the exact hour that a big buck comes across his feeder. It never happens. Never. Last Saturday, he came home with his cousin, Matt. I knew by their expressions, it had not went well. Their heads were hung in shame. No buck. No doe. Not even a raccoon. It was horrible. Opening day of deer season was an epic fail for these two. I thought tears were going to fall. Gunshots were heard all morning throughout the valley, I thought it was one of them. I had hoped, anyway. Matt soon left to wallow in his own self pity, while Jason stood beside his truck, his trusty gun in his hands. Jason held the gun, wondering where they had went wrong. They had a plan and the plan was perfect. His buddy, Rocky, pulled in to ask directions to another deer camp. Jason looked up, across our backyard, in deep thought. His eyes widened in amazement - a buck was running, slowly, toward the creek. He saw horns. His trusty gun was in his hands already. His plan had aligned. He fired one shot and the buck was down! I thought him and Rocky were going to leap across the pasture. They found the buck only a few yards from where it fell and put the last final bullet in him.

Peace has been restored in my house.

 

 

 

There's something insanely hysterical about life....

Life isn't easy. Life is never going to be easy. I don't care who you are, how much money you have, what kind of education you've received, who you married....as some point in your life, it has been hard. Difficult. Utterly painful. We all struggle. We all face problems. We all have hurdles to overcome. It's what you do in the wake of that hurdle that makes or breaks you.

My defining moment was obviously Jonah. He continues to define me. I was Elijah's mom for 6 years prior to ever meeting Jonah. Elijah shaped and formed me into the kind of mother I thought I always wanted to be. Maybe. I failed. I failed in many areas on Elijah. But when I became Jonah's mother and people stared at me - I like to think, in amazement - but I really think everyone was waiting for me to fall apart. Jonah defined me. When I held him, watching him take his meager last breath, I could have curled up on that hospital floor and died, in that instant. I didn't care about anything past that moment. Jonah was gone and I was still here.

I've talked about those moments until I'm blue in the face. Everyone has heard our story a billion times and yet, I continue to tell it. Jonah's presence in my life solidified it. I can't even put it into words. Miracles happen everyday. I know this. We've all been told this. But when a surgeon tells you that your son should have never been born - you know a miracle has happened. When he shakes his head, not understanding how his heart was beating, you just brace yourself.

We all defy odds. Every life is a miracle. Every moment is something to be grateful for. In an instant, it can all change. The life you knew five minutes ago could vanish. I didn't live to watch Jonah die. Jonah didn't die so that I could live. It was the never ending cycle of a difficult life. It wasn't just something that "happened." He was given to us, to meet us, to see us and to be a part of our lives. My husband changed on that day. The people that are the closest to him know this. He struggled for several years afterwards. He wanted to forget, to soften the blow, and sometimes, just pretend he never buried a son.

Yes, it's easier to forget than to face our problems. But in that, there is no lesson learned.

Tonight, as I was sitting in my living room, my dogs alerted me that something was amiss in my front yard. I hurried outside, expecting to find a snake. I didn’t. It was a tarantula the size of Godzilla. For a moment, I thought I was in a bad sci-fi movie. I ran inside and in my true Southern manner, yelled for Elijah to grab a gun and come on. I showed him the beast, which had apparently lost a few pounds by the time Elijah arrived on the scene (Elijah was not impressed.) Elijah debated on killing it while I’m yelling “shoot it” from the safety of my front porch. One shot did not satisfy me, while I cheered Elijah on to shoot it more than five times. 8 BB’s later, a curled up dead tarantula and a psycho mother, my children learned that at times, I may need medication. The tarantula learned that he picked the wrong land to crawl across.

My point is this: I am a different mother to Elijah. I'm a different wife to Jason. And I'm becoming a new mom to Elizabeth, after the adoption. (Dec 6th! It's a girl!) 

As my dad jokes, "you have a heart bigger than Texas." (Which more often than not, gets me in trouble.) I like to think I have a little bit of Jonah's heart living in me.

Opening Our Hearts....

I think of how drastically our lives have changed in one short year.  Some days, I can't remember it.  Other days, it feels like yesterday, hours away, in my memory.  We are coming upon almost four years without Jonah.  Four long years. I talk to older ladies at the nursing home as they recall the horrors of losing their children, burying infants or toddlers.  Seventy to eighty years may have passed, they'll still hang their heads and whisper, "I was never the same afterwards." It's true.  We are never the same. But as I tell everyone, there is a blessing in every tragedy, whether or not, you choose to see it or accept it, is completely up to you.  I choose to make Jonah's short life a blessing.  I want to remember our short days together with happiness.  I choose to work toward congenital heart defects awareness.  But it doesn't just stop there.  Without Jonah, we would have never opened our home to the children in our care.  We went from one child - one lonely, only child - to five children.  They each are unique in their own way and they each bring a wonderful dynamic to our family.  They push me to my limit, at times, but they each bring out something different in me.  I learn about myself as I learn about their personalities, their fears, their pasts and what I hope for their future.  With each child, we remind ourselves that we don't care about their past, our only concern is for their future.  We are preserving that each day that they come home to a safe place with a positive environment.  Did we expect things to be this way? Absolutely not.  Two years ago, we said only one child. We'd only bring one child into our home.  With each child we met, we found a new mission.  Some didn't work out the way we had planned, but we did everything, within our power, to protect that child and get them the care they needed to be successful in life.

 

Three and a half years ago, Elijah lay beside me in bed, asking many questions about Jonah.  He cried because he had only wanted a brother. He was a strong six year old but weak in that moment. I whispered that we would give him a sibling, I promised.  He looked at me through teary brown eyes, "You tried that, mom. It didn't work." I laughed.  It was so simple to Elijah.  His mind was innocent, clouded by the harsh reality that baby's do die. Those moments are long gone.  Jonah's memory still prevails in our home, but those conversations aren't present around here.  We're busy, just being a family.  We've very imperfect within these walls, but collectively, with all our pieces, we rarely notice the flaws.  And for that, I am thankful. Thankful that Jonah was with me for 17 days to show me how important life really is....to be appreciative for every given moment with our children, biological or not.

 

With an open home, we have opened our broken hearts.

 

 

 

 

Don't forget to join us on Team Jonah's Heart Walk team! Sign up here: http://heartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1026368&lis=0&kntae1026368=6610DC03BC98434E821CC3A948025D01&supId=0&team=5367411&cj=Y

A Hard Truth

No one ever said this journey was easy. Difficult, at times, but well worth every second.

I checked B into an inpatient mental hospital on Friday. I had regret. I worried that we were wrong. Could he just be rebellious? Could we continue trying with him? When I dropped him off, I was told it would take up to four hours to evaluate him and determine if he could be admitted. I left and waited. At almost 7 last night, they called to tell he was admitted to acute rehab. They stopped just shy of calling him a sociopath. You did the right thing, was the last thing I was told.

What some people may have thought they knew about B, you never knew.

B is tormented by things beyond our control. He just turned 9. I think it's unfair to simply label him and toss him to the wolves. He needs help and I'm making certain that he gets it. Love and stability could not save B. He is a master at his illness. We've struggled with it. We've ignored the warning signs. We've disciplined him accordingly. We could no longer allow the other 3 children in our home to watch B self-destruct. It is what it is and it had to be done - that phone call confirmed to us that these measures had to be taken. I don't know if B will ever come back to us. I don't know if B can ever function as normal thriving citizen of society. I can't exactly say what his future holds but for now, we have to step away from him.

We have learned a hard truth in this journey: love can't heal everything.

I do know that last night our home was at peace. It was comfortable and we could relax. It was normal. His name wasn't mentioned. In two weeks, he'll move to a permanent facility to complete his rehab. He'll be further away from us, and we'll be asked then to make our decision. Be a part or walk away. We haven't even discussed it yet. B made it very clear to me as he was leaving that he didn't like me, then he turned and told me he loved me. I am allowed to call and speak him to him but have no plans to do that. They said last night that he misses me tremendously. However, he's manipulative. He'll say anything for me to pick him up. I'm standing my ground. This isn't about me or Jason or our family ~ this is only about B getting the help he needs and deserves. I'm angry at the adults that did this to him. Furious. It isn't his fault but it has to be corrected for him to have any chance at normalcy.

Pray for B.

A Little Bit of Wonderful

B is not a bad kid. He’s an ordinary kid.  His past has shaped him into the little 8- year old he is today.  Unfortunately, for me, I don’t know his past.  I put the pieces together one at a time, slowly.   Actually, I’m searching for the pieces to put together.  We have our moments. When they happen, I look at him, and I wonder what has happened to shape him into that person. 

Why doesn’t he trust me?

Why does he seek out my face in a crowd?

Why does he distance himself one second, and wrap his arms around my waist the next second?

Honestly, if you spend five minutes with B, you’ll never meet a more gracious child.  He possibly says “thank you,” 15 times a day.  Over the smallest thing.

What has he been denied in the past?

What was he never given?

B has been my biggest reward and my largest challenge. I can change B’s life. B’s life can be saved. It can be transformed. It’s happening every day when a person in my community gives him 2 minutes of their time. B’s life changed in the scrimmage on Saturday when he caught the rebound and dribbled it half court. He shook his little fists in the air, in victory.  That exact moment, his life changed for the good.  B exists in every moment. He’s fully aware of his surroundings and how his life is changing each second. He loves it.

The little ones are less affected by their lives. They possibly won’t remember the days prior to this.  B knows. B knows many, many things. B is tender, sweet and gentle. He talks with a small voice, almost a whisper, leaving his R’s out. He’s excited about everything. He smiles wide, and he has the most beautiful blue eyes with specks of green in them.  This kid is amazing.  Through his eyes, I have seen what we all take for granted.  The simple things in life.  He has enriched mine just by simply walking into it. I always thank his caseworker when I speak to her.  I want B to experience so much and not to be judged for what his life was before.  But B also comes with his set of challenges.  I take them in stride, take a deep breath and *pray.* If you don’t know his past, how do you know how to help him?

We started counseling last week. I mentioned this before. It opened my eyes to a whole new child.  The doctor had counseled B for the year prior to him living in our home. This doctor knew all about B and his life. I asked the doctor, privately, to tell me more about B and to help me find these pieces. He was surprised that I didn’t know more, and suggested we get B to tell us.

I hadn’t taken that approach. Just ask.

B was an open book that afternoon. We sat in the office for an hour and a half, chatting, laughing, and sometimes, frowning.  But what I noticed most during our conversations, he started calling his “original” mother by her first name. He never called her by the title that she didn’t deserve. 

We are a constant work in progress. Some days, I’m exhausted. Other days, I’m not. This isn’t easy by any stretch of the imagination but it the best thing ever. B’s getting a second chance at a life. 

Yesterday, after the scrimmage, he thanked me (yet again) for letting him play. Another high-five ensued and a short recap of the day’s events. To B, the details aren’t important – the bigger picture is. He played on a basketball team today. His team. For the first time ever. He didn’t make a basket, he wasn’t the fastest kid on the team, his defense was a little sketchy but that didn’t matter. He played.  Elijah patted him on the back and told him how proud he was of him. We couldn’t wipe that smile off his face if we tried.

I know there will be many more challenges with B.  We have many uphill battles that I will have to choose very carefully. He is wounded and scarred but not unlovable.

In all the things we take for granted, I’m watching a little boy transform. 

 

This crazy little life....

     It’s been awhile since I’ve been here. But I will tell you that, for this moment, the blog is a lie. It’s no longer our life with an only child. Our life continues with Elijah. Always. Our life goes on with a tender-hearted, happy 8-year old boy. Our life goes on with an emotional, bright-eyed 2-year old boy. Our life goes on with the one we’ve affectionately dubbed, “the boss,” a 1-year old little girl. Without crossing too many boundaries on the rules that have been placed on us, I will tell you how blessed I am.

     Elijah is still Elijah. Only happier. His life is full now. He takes in every moment of the excitement and you can see it all over his face. He’s introducing a new world to three small children that could only imagine this type of security and happiness. He has a new instant, built-in best friend, sidekick and sometimes, opponent.

     B, our 8-year old, is a bundle of wonderful. His heart is as big as his smile. A kid that truly knows the meaning of being grateful. He knows what its like to have absolutely nothing. No food, love, support, kindness or compassion. Every part of his being is generous, right down to the food he is eating. I’ll watch as he separates it up to make sure the other 3 each get a share of his, even though they may have their own. He enjoys this new life with wild abandonment. In the small 40 hours that I have known him, I have fallen in love with everything about him. He is the reason I wanted to do this - open my home and my heart to others.

     N, the 2-year old, and T, the 1-year old, have brought a newfound laughter and joy into this house. N is timid and happy, most of the time. The other times, he is emotional and struggles with communication. He challenges us to take our levels of patience to a whole other level. We take N cautiously. We handle him gently but firm. He craves structure and discipline. He needs it. With B coming into our house, N is trying to find his place. He’s lost Elijah’s attention and he’s becoming the annoying younger brother to the big boys. I chalk it up to being a part of life but I know that N and his sensitive soul take it much harsher. I distract him, hold him and spend more time with him. T, on the other hand, will force the attention to be on her. She was born with an attitude and will display it at any moment. But when T is in a sweet mood, she beats everyone in the house on hugs and kisses. She’s completely unaffected by her past, thus far. She marches around the house, babbling about what everyone needs to do for her, while stealing toys, remote controls and food off their plates. This is T’s world and we’re all just living in it.

     Our life is full. We wouldn’t have it any other way right now. Our family needed this. For the ones that think I took on too much or that I overload myself, think about the kids. Too much was placed on them at a young age. The people that they are taught to love and trust the most let them down. I’m trying to rebuild that and give them a 2^nd chance at a life full of love and security.

     My life is blessed and I want to share that with others. I want to give them a piece of what has been given to me. Not worldly items, the pieces that are in my heart. Love, tenderness, excitement, joy, and compassion. I want to give them all that Jonah gave me. Our only regret is that we can’t do more. We can’t take on more children at this point and we struggle with that. We know our limits and they have been met.

Our life with four children.

Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you. James 1:27

And anyone who welcomes a little child like this on my behalf is welcoming me. Matthew 18:5

　

August 6, 2009 - Jonah's 17th Day (and 14 minutes)

August 6, 2009

At 12:14 this morning, three years ago, I cuddled my little baby boy for the first time. Tears streamed down my face, as I kissed his cheeks and spoke softly to him. It didn’t take much time. I was holding him by midnight and he was gone 14 minutes later. He took his last deep breath and that was it. It was serene and quiet.

“God needed Jonah. In time, we might heal and the days will become less painful, but I'll never forget the 2 1/2 weeks I spent with the strongest little boy I've ever met. He went peacefully in my arms just after midnight this morning. He went on his own without us making any decisions for him. I'll never forget Dr. Brian Eble's comforting words to us - "When it's Jonah's time, God will take him, regardless of the machines or the medication." And God did. He didn't put that burden on us. I held him for a short amount of time, until my grief overcame me and I asked Dr. Eble to take him. Dr. Eble whispered "It's okay. Jonah's gone now." We find comfort knowing that his suffering is over and that he is safe in the Lord's arms. This was not for us to understand but we were blessed to have Jonah in our lives - even if it was too short. We will never forget our beautiful baby boy.”

I was surprised at how quickly it all unfolded. One minute, we were laughing and enjoying the miracle that had happened…the next, we were kissing him goodbye. For all it’s worth, the DNR didn’t matter. Dr. Eble tried to help him, tried to save him and it didn’t work. He was leaving us, regardless. I felt like the family was robbed of saying goodbye to him but maybe that’s why we were given the day before. The good day. The calm before the storm. Everyone left that evening so happy and joyful for what had transpired that day. Jonah left everyone feeling happy that day. He showed us what miracles consisted of. His life didn’t turn out the way we would have chosen but each day of his life was a true miracle.

August 5, 2009 - Jonah's 17th day

August 5, 2009

“Thank God for miracles, and thank you for all the prayers and support. Jason and I witnessed a wonderful miracle today as little Jonah was able to stabilize himself. Last night, things looked grim for our little man, as the doctors prepared us for the worst. However, nothing is too large for God and Jonah left the doctors amazed today. He still has a long road ahead of him and still needs all the prayers but he is fighting and so are we. God Bless everyone - we cannot thank you enough for all the prayers! Please continue to pray for Jonah each day!”

On this morning when I walked into Jonah’s room, I was astounded at Jonah’s numbers on the monitor above him. His blood pressure, heart rate and pulse ox were all higher than they had ever been. They were stable. We had agreed on minimum medication-type support for Jonah so I couldn’t comprehend what I was seeing. We had decided to keep him comfortable until he was called home. Dr. Bhutta, Dr. Dyamenahalli and Dr. Garcia surrounded Jonah’s bed. They had no explanation for me. “He’s stabilized himself.” were the only words murmured. There was no medical basis for what we were seeing. He left the doctors scratching their heads. He was still responding to me, holding my finger, moving his legs and he was alive. This day is also my father’s birthday. It wasn’t his best birthday, watching his grandson clinging to life. But my cousin brought a cake in and we celebrated it the best we could. For the next 8 hours, Jonah remained stable, on his own. He still was on a ventilator but everything else was on his own. Dr. Eble came in for his shift that evening, giving all thanks to God for Jonah still being there. Dr. Eble hugged us both with tears in his eyes, just as astonished as we were. At darkness crept in, my family said goodbye and did not stay to keep their vigil over us, for Jonah had stabilized and all was well in our world. We gave hugs at the elevator, proclaiming the miracle we had seen and they were gone.

Jason and I both went back to Jonah’s room to watch over him and be with him. We sat in there for over 2 hours watching as he remained stable, discussing it with Dr. Eble and Jonah’s nurse, Whitney, that evening. We were excited and cheerful as we kissed our little man goodnight and headed out to the waiting room for the night. We chatted and laughed with a few families out there as we prepared our beds. As we sunk into our make shift beds and began our nightly prayers, we had no idea that Jonah was preparing for his trip home.

August 4, 2009 - Jonah's 16th Day

August 4, 2009

“I don't have the words for an update today. Jonah has had a horrible night and the doctor's are exhausting every avenue to get him back on track. I know that these things are not for us to understand but it doesn't make it any less painful.”
　

Today, my life came to a halt. As I walked to Jonah’s room on this morning around 6 AM, Dr. Bhutta was standing outside Jonah’s room. He was leaning against the windows, looking intently at my son, and he sighed. His eyes met mine and I knew something was terribly wrong. He rubbed his face and let his head hang low. “I don’t think we can fix him.” The words pierced my heart. “We need Jason here.” I begged for an answer. Why? Why now? He said, quietly, “It’s his lungs now.” He bit his lip and shook his head. “His kidney’s aren’t working, Wendy. Now, his lungs aren’t getting enough blood flow. He’s struggling.”

I rushed back to my room and called Jason and told him to get here as soon as possible. We had to meet with Jonah’s team around 10 and make some decisions.

We sat in the tiny office in the CVICU, surrounded by Jonah’s team of nurses and Dr. Dyamenahalli. Hilary, our social worker, was there to lend a hand, too. Dr. Dyamenahalli made clear in no uncertain terms that it was all up to Jonah at this point. They had exhausted all resources and they could not fix him. We were given the opportunity to revoke the DNR order and to place him back on life support, if it became vital. Otherwise, they would just keep him comfortable, watch for any signs he could be sending us and prepare ourselves.

I called all the family to come in. It was a agonizing waiting game. Horrible. Jonah did not decline that day but he didn’t improve either. He didn’t require support and we didn’t revoke his DNR. But as nighttime approaches, vitals usually decline. My family sat up all night in the waiting room, watching as I tried to get a few hours of sleep. They were prepared to be there for us, to hold us up at any moment. It was after midnight before I finally fell asleep…and when I woke the next morning, Jonah was still with us.

August 2, 2009 - Jonah's 14th Day

August 2, 2009

“Jonah is 2 weeks old today and he had a good night!”

The days were becoming uneventful and not too progressive. We were at a standstill with Jonah. He wasn’t improving but he wasn’t declining. We took it in stride and prayed for the best. His life was in limbo and we were just going along for the ride. I was enjoying the peaceful time. I was enjoying the time to touch my baby and have him respond to me.

“Jonah is still a sick little boy and he has many battles ahead of him but he has overcame so many HUGE obstacles, I think his days might get easier. He's came through the longest of heart surgeries - over 12 hours - and 3 much smaller surgeries (but of no less importance) and he's come off his support. His color is improving and they did drain some fluid off him but he's still quite puffy.”

He was still on dialysis and still not putting out much fluid. He was swelling to the point that closing up his chest was just not an option. Jonah was comfortable and in no pain but he was allowed to wake up, wiggle and open his eyes.

“BIG NEWS - he smiled for me today. I came in at 6:30 this morning. Brian (I think he's Jonah's favorite nurse) said he smiled. Brian even had a witness to this. I was pretty bummed that Brian is getting more attention than me. But he does take care of Jonah for 12 hours straight, constantly by his bedside. Dr. Elbe came in while I was there - joking that he heard Jonah said his first word last night….for Brian.”

The nurses spent more time with Jonah than anybody. Jonah still had his days and nights confused, and for Brian, that meant he got the best of times with Jonah. He bathed him, talked to him and Jonah pulled out all the stunts for him. Brian enjoyed seeing what Jonah would do at night when he was awake. Even more, Brian enjoyed reporting it back to me when I arrived at the hospital at 6.

“On a more serious note, he did explain that while Jonah didn't make any progress overnight, he didn't have any setbacks - and that in itself, is progress. They have alot of work to do on Jonah's blood. His pH level is low but his vitals are good.”

It was still a balancing act that Jonah’s body couldn’t perform too well.

“I came back at 8 this morning, just for a few minutes before the doctor's made their rounds. I talked to Jonah and was explaining to him how great my love was for him. :) And he *SMILED* ever so slightly.”

I remember his little rose-colored lips, spreading wide. You could almost see the dimples in his fat cheeks. It was what I needed from Jonah that night. A sweet smile. It was nice to see that he did save some stunts for me.

August 1, 2009 - Jonah's 13th Day

August 1, 2009

On this day, I could have danced through the corridors at ACH. My baby was off ECMO.
It was a day of celebration. I was overjoyed and in tears most of the day. We had that enormous ugly machine and Peter behind us. We were moving forward. I also made a decision no parent should ever have to make….a DNR. Once the doctors saw I was so cheerful to be off ECMO, the next question was, “what if he has to be put back on it?” No. Don’t judge us for that choice. We prayed about it and discussed it as his parents. We didn’t involve anyone else except his team of doctors in that decision. It was what was best for Jonah. We do not regret that choice.

"Jonah is proving every day to be a fighter and a true warrior. He came through surgery - and did NOT have to go back on ECMO. Thank the GOOD LORD for all his wonderful blessings and miracles. I can't understand why this all happened and I don't know why God is allowing us to witness it all. It truly is amazing to see this 13 day old baby with more fight than any adult I've ever met.”

Jonah was returning to typical baby mode, except for that wide-open chest with a thumping heart. I didn’t notice that anymore. I only saw my gorgeous son that entranced me with each glance. Of course, with every two steps forward, we take a step back. And we did. Jonah’s kidney’s were shutting down. Renal kidney failure. You never want to hear those words. But considering what Jonah had just triumphed over, I didn’t see this as a huge complication.

“He needs prayers for his kidneys today. We have another obstacle ahead of us. Jonah has quit producing his normal amount of urine. His kidneys did go to sleep while he was on ECMO this last time. They are putting him on dialysis. His cardiologist (Dr. Eble - the BEST) said it could take 2 days to a month.”

Out with one machine and bring in another. Here came dialysis. They had to search the hospital for a dialysis machine appropriate for him. Dr. Eble thought dialysis might wake up those sleepy kidneys, and we were willing to give it a try.

“Jonah is opening his eyes more often. He's discovered his tongue and is really showing it to all of us. His nurse last night, Brian (also, awesome) said Jonah woke up for his entire bath last night. Brian said he watched him intently - did not just stare off into space.”

“Today, little Jonah almost looked like he wanted to cry. He's not feeling pain. His doctor reminded me that is what newborns do - CRY. It's been awhile since I've had a newborn. He is a little uncomfortable from the swelling but the dialysis will remedy that, as well.”

He was swelling more as the time went by. As soon as my newborn returned, he slowly started to fade again as his body began to fill up with fluids. I waited anxiously for the urine. Pee, Jonah, pee. I just kept waiting for it.

“Jonah's still a sick little baby but he’s doing the work himself right now. No support except the ventilator, which he had previously been breathing over. He's blowing bubbles and wiggling his fingers and toes. All beautiful things! He gripped my finger today until he went to sleep then he relaxed.”

At this moment, I felt as if Jonah had won half the battle. He was needing less support to survive and he was waking up more, and being my baby. Five days left in his precious life, and I was still unwilling to admit defeat.

July 31, 2009 - Jonah's 12th Day

July 31, 2009

“Yesterday, while my faith was being tested, I should have just opened my eyes to the wonderful miracle occurring. When we had the hands and feet issue yesterday, the doctors said it could take 2-3 days to clear. But I know the power of prayer and I immediately sent prayer requests out and within 2 hours, there was a noticeable change in Jonah's hands and feet.”

This was not one of the first miracles I had witnessed there but it certainly was something quite remarkable. To see your child’s feet almost black and in less than 2 hours, almost back to normal colors was incredible.

“Jonah had a good night. Dr. Michi came in and manipulated Jonah's external pacemaker like he was playing a video game, but he liked the results of Jonah's heart rate. The ECMO coordinator, Peter says Jonah just wasn't ready to say goodbye to him.”

When a baby has to be placed on ECMO, heart parents cringe. We know that mechanism, we fear that machine. It’s a massive life support system - a bypass machine. It’s difficult to come off ECMO, and we were told from the beginning, 30 days maximum and that was pushing it. It sends children into kidney failure, organs began shutting down when they aren’t used. The clock was ticking each day Jonah spent on it.

“Peter is the best and he makes me stronger. He's allowed me to touch Jonah more than anyone and gripes at me when Jonah's hair is not brushed properly. Today, he has sent me out looking for an ideal stuffed animal to place between Jonah's legs when he lays on his side. We're thinking a snake. Peter demands and I shall answer them.”

We were settling into our home life at the hospital. Staff members were becoming our friends. Often times, I felt myself venting on them, bonding with them and just sharing their stories and mine while I sat by Jonah.

“He's going to more testing today. We're praying the doctors discover the one missing piece that is not allowing him to come off ECMO. And we're hoping that it's not just his "wimpy" heart (Dr. Michi's words, not mine.)”

We all wanted Jonah off ECMO. Once he was off ECMO, we could move forward and let Jonah guide us. That was our goal. We watch Jonah and see how he recuperates and faces each obstacle. The plan was to find out what was standing in his way.

“We DID NOT have a setback yesterday. Some people seem to think so. Jason and I do not. We were blessed with another miracle yesterday. They sent Jonah off for a heart cath yesterday where they are allowed to see a more extensive picture of Jonah's veins and arteries and see where he is failing. The doctors have been baffled by why he can't come off ECMO. The doctor that did the heart cath called us back and Dr. Michi was with him so we knew this meant more surgery. This is a relief to us. If they had not found anything wrong with Jonah, the only culprit would have been his weak heart....and then he would have needed a transplant.”

This was a victory day for us. We were happy to find Dr. Michi in Jonah’s room with answers and explanations. While, yes, it did require another surgery, but it offers a solution that we didn’t have otherwise. In this situation, you have to exhaust all avenues. You have to give your child every opportunity to survive.

“Jonah’s pulmonary arteries that carry the oxygenated blood to the rest of his body were too narrow. Dr. Michi's going to take Jonah back into surgery this afternoon. Afterwards, he should not even have to go back on ECMO. This should be the nasty culprit that's been causing Jonah to fail this whole time. Everything else looks good in him. So, sit tight today in prayer, a miracle is going to happen.”

We did not let this new discovery bring us down. They had forewarned us that when the heart is formed improperly, other things often go wrong. Sometimes, it takes awhile to discover all the defects. First and foremost, the child has to stabilize. The pulmonary stenosis was not something to be taken lightly, but at this point, they thought it could be managed.

“Everyone breathed a sign of relief. Even Dr. Michi chuckled afterwards - he was happy it was something he could fix. He's going to patch it with cow membrane! Jason looked at him and said "Venison?" Jason's a red-blooded meat-eating hunter. How could he get his meats so confused? The doctor laughed. Jason asked "Veal?" The doctor laughed again. We all said "BEEF!" I wasn't sure at what moment Jason became confused over his choices of meat but the boy sure wasn't with it. “

This conversation was some much-needed comedy relief. We had a very trying 24 hours and we had an answer, a solution and a very confused daddy. Dr. Michi was taking a very aggressive step in treating the pulmonary artery stenosis. But it was necessary in Jonah’s situation. We had to act fast to treat him, fix him and get him in recovery.

“I didn't make it to Wal-Mart yesterday. It was just too far. I found a Walgreens really close and went there. It took no time and Jonah was in the heart cath while I went.”

I hadn’t left the hospital since I had arrived on July 21^st. Ten days straight without leaving. I had made promises that I was going to Wal-Mart that day. I was going to venture out. I couldn’t. We made it down the street and I couldn’t breathe. I couldn’t function. I can’t describe the feeling of panic I had once I left the hospital. I spotted a Walgreen’s and we made the quick trip. I could only relax once I was back in contact with Jonah.

“Jonah is in surgery as I write this. While I'm nervous for him to go through another surgery (his 4th thus far) - I believe that we'll all breathe easier once this one is complete. This one surgery is the missing link to the puzzle. His nurse said he woke up for a few moments before the anesthesiologist came in, so she gave him a good talking to and he was geared up for the surgery.”

“We ran into Dr. Louis (Jonah's previous anesthesiologist) and he was upset that he didn't get Jonah's surgery today. He likes Jonah, and has become attached to him. He stops by to see him everyday and check on Jason and me. These doctors and nurses become like family up here. We have formed a connection with several of them.”

As I said before, ACH was becoming family to us. It doesn’t take long to bond with people when your son is in their care, and it’s a matter of life and death. Three years later, we still have contact with some of them. They were an important part of our lives and Jonah’s.

July 30, 2009 - Jonah's 11th Day

July 30, 2009

For me, this was one of my first especially challenging days. This was the day I was faced with a tough reality. I was faced with the straightforward facts that Jonah may not survive. As you see by reading this, it was an up and down day all-around.

“A big step forward and small steps back. It's natural through-out this process.
Jonah passed his trial run off support yesterday with flying colors. Dr. Michi came in and removed his life support yesterday at 3:00 PM. JONAH IS DOING AMAZING. That's right - AMAZING.”

Jonah had been doing so well with everything he endured, that setbacks were not normal for us. We were thrown some curves, some things were in the air and our lives were very unstable. The words in CVICU that are often repeated - “two steps forward, one step back.” It’s that one step back that can kill your spirit sometimes, and it was no different for me on this day.

“However, a small step back. His hands and feet are turning colors. We had noticed them turning colors the past few days. The nurses kept telling us it was one of the medicines he was on - it was taking blood from his extremities and constricting the blood vessels. Fine. Today, things are much worse. Dr. Michi is in with him now. He's bringing him down off the medicine to see if that's what is causing it. It could also be clots from taking him off the support but he said he has a plan for that, too. So, through this small step back, I don't have the heart to write today.”

You don’t know the agony you feel walking into your son’s hospital room and seeing his feet and hands purple. Not a little blue….dark purple…nearly black. It was the precursor that you never want to see. It was the tint of all things dying. And it was killing me, too.

“The power of prayer. Jonah's hands and feet are returning to their normal color. I've had a rough day but not as rough as Jonah. But fortunately for him, he won't remember it. I've decided that I can't handle the "bad" days. The doctors have prepared me for this but today, I lost it. After crying for an hour and completely blaming one doctor for Jonah's setback, I was sent to counseling today.”

My own strength was tested this day and I failed wretchedly. I can recall the sense of complete rage in my mind. I felt like someone had failed Jonah.

“The counselor is now following me around like I'm deranged and could go postal at any moment. I was able to vent and work through some things that I was keeping bottled up. But I did feel like Jonah had been doing so well with his team of doctors and last night, he had a new doctor, and the bottom fell out. I blamed her outright, but sometimes, I think we need someone to blame.”

I am his mother. I was the one person to stand up for him, to defend him and to protect him. Once he was stable and his extremities began to recuperate, I was able to get out the fury that had bottled up in me that day. I wasn’t sure if this was a sign of strength or weakness but I felt as if we had failed Jonah, too. I was frightened. I was fearful that in trying to mend Jonah, we were making things worse. I’ve always emphasized quality of life over quantity of life. Did I want Jonah with no hands or feet? Was that any way for a child to be raised? Was I being selfish?

“The team up here is very forgiving of mommy's. We're a tough crowd. We are allowed to feel what we need to feel. But on to the little man, he's cruising right along again. He's back on ECMO - something we wanted to avoid at all costs. But since he's been on it, his kidney's have been functioning again (he's peeing!) and the color is returning to his extremities. Dr. Michi is going to start performing more tests on him tomorrow to see exactly what is going on in Jonah's body that he won't stabilize himself. His tests on his heart have all been good.”

We recovered from our grueling day and a plan was put into place to look into Jonah’s body deeper and see what was causing the problem. Jonah’s thumb on his right hand never recovered and we were told it would have to be amputated in due course. I kissed Jonah, and smiled, “You’ll just have to be left-handed.” And my evening went on.

“The doctors have not given up hope that they can fix Jonah. And while I did get discouraged today, and was afraid I was losing my faith, I am back on track now.”

My heart skips a beat and my breath is hard to come by when I think of these days of trials and tribulations of the worst kind. As a family, we faced so much in a short amount of time. Every day was borrowed. Little did we know that we had less than a week left with our sweet baby.

　

　

　

July 28, 2009 - Jonah's 9th Day

July 28, 2009

“Little Jonah had another good night. He had a rough day yesterday but he was a trooper and he pulled through it beautifully. Yesterday afternoon, the results of his echo showed a blood clot in his heart. Dr. Michi came in and performed an 1 1/2 hour surgery on him and removed it. This man is truly a gift from God. Jonah's numbers did better and Dr. Michi said he had planned to move forward with removing Jonah's support today.”

“About 8:30 last night, Jason and I went to see Jonah again, and his room was full with several nurses and doctors. I panicked. His nurse met me at the door. He said there had been some bleeding and they were talking to Dr. Michi to see what he suggested they do. They did an x-ray, and stopped the bleeding. Dr. Michi said it could have been post-op bleeding or because he had respiratory therapy that afternoon. Regardless, it wasn't enough blood to be anything major but they did take their precautions and moved up his support a little.”

These were the moments that instilled panic. We walked to Jonah’s room to discover a room jam-packed with staff. These are the moments when you nearly drop to your knees and bawl. Fortunately, this was a trivial situation and was easily fixed. It could have been much worse had his nurse, Brian, not taken it seriously.

“When we walked in, his nurse started telling about how he discovered the bleeding. He said "Jonah had his eyes open so I walked over...." HE HAD HIS EYES OPENED?? Tears came to my eyes - I hadn't seen his eyes yet. The nurse smiled and said "He'll do it again. Let's turn the light off." So, with everyone still in the room, Jason and I stood by in anticipation as they turned the lights down. A few minutes passed, Jonah opened his eyes wide and stared right at me and Jason. We stood there for about 5 minutes just locked in eye contact and talking to him through our tears of joy. My baby is beautiful.”

I remember this moment like it was yesterday. Jonah opened his eyes and look intently at us. His trance was locked in on us, beautifully. His head shifted to spot Dr. Michi standing on the other side of his bed. They locked eyes for a second and Dr. Michi whispered, “Look at your mommy and daddy. You don‘t want to see me.” And on cue, Jonah shifted his head back to us. He kicked his legs in excitement and held tight to my finger. We talked softly to him and he puckered his lips, unable to make a sound. Jason massaged his head and Jonah wrinkled his forehead. It was one of the best moments ever and I didn’t want to leave. After a few more minutes, Jonah drifted off back to sleep and like all our moments, it was brief. I felt a new bonding with Jonah. I felt closer to him. I can’t really put it into words but we both knew the importance of that moment. Three physicians, four nurses, and two happy parents - not a dry eye in the room. Everyone felt the importance of that moment.


“I also had the opportunity to do several other "firsts" yesterday that so many moms take for granted. I was allowed to put his diaper on (although it's just for vanity purposes) and I brushed his hair. I helped position him on the bed, so I was allowed to touch his back and his bottom. My touching him has been minimum - limited to the hands, feet and face. I hope he loved it all as much as I did.”

Peter, Jonah’s ECMO coordinator, pushed me outside of my comfort level. He asked me to take care of Jonah. To help him turn Jonah, to help fix him up and bathe him. Peter was the only nurse that asked for my participation. We rolled Jonah on to his side and I patted his tiny bottom. Jonah stuck his tongue out in response to the pat.

“I saw my son's beating heart today. The ECMO coordinator, Peter, suggested I do it. I looked. They had been covering Jonah when I walked in the room - these nurses are learning just how much mom can handle. Jonah's chest is still open. It wasn't as bad as I thought it would be. It was actually quite amazing."

Peter encouraged this moment. He forced me into it. I never wanted to see Jonah’s heart. Peter made it sound as if it was an art form to watch a beating heart. I knew I would never get the chance again. And Peter was right. It was unimaginable to watch Jonah’s tiny beating heart. God’s perfect creation. It brought tears to my eyes as I caressed Jonah’s hand. I never had to have Jonah’s chest covered again. I learned to appreciate that beating heart!

“This morning, Jonah opened his eyes for me again, and held tight to my finger. He finally loosened his grip after ten minutes, letting me know that he needed his rest. He has a big day today. We're hoping and praying to remove him from support.”

That evening, Jonah was removed from support with great success. My little baby was living and thriving on his own. His body was doing what it was supposed to be doing and he had come a long way. Our journey was still continuing, still amazing and still emotion-driven. But it was a journey.

July 27, 2009 - Jonah's 8th Day

July 27, 2009

At this point, the days were becoming one. My days were crammed with countless emotions. Fear was the principal one. Each time, I paced back to Jonah’s room, my heart would plummet to my stomach if his doctor was in his room. You never know what news a doctor is going to bring. You hope for the best but prepare yourself for the worst. I don’t believe a person can wrap their mind around the intensity of this fear unless they are experiencing it themselves. Your child’s life suspended in a very delicate balance. It hurts every inch of your body to watch the days unfold, not knowing what was in store.

“Jonah had another great night. He tried to escape last night so they had to up his morphine just a bit. I've talked to him about this and he promises not to do it again. He started kicking and moving his arms around and acting like a typical newborn...but he doesn't know any different so the nurses didn't discipline him too much.”

Jonah was thriving and trying to become a ordinary newborn. He made faces that made us believe he wanted to whimper or sometimes, smirk. He would shift his head in our direction when we talked to him, and he was getting stronger each day.

“Today, Jonah is a week old. We are so thankful for him and blessed to have him in our lives. He's getting cuter each day and starting to make more facial expressions. He's responds when I kiss on him (which is alot) and we've noticed he's ticklish in his feet.”

I remember his little legs kicking each time we would pat his feet and it was the sweetest movement. Jason and I would giggle as we tortured him by continuously tickling him.

“His surgeon, Dr. Michi, was in his room this morning when I visited - he smiled and said "You son do good." He is Japanese and we sometimes have a communication gap but he knows the words I need to hear.”

“He's still making his adorable facial expressions but only now, I can't kiss him anymore. They asked me stop doing that. I will listen to them only because it's my sons health.“

Days became more critical for Jonah as we prepared to remove his support. The fear of infections and germs forced him to be put on gown-and-glove isolation. This didn’t stop us from spending time with him but it did limit our contact. We no longer had skin-on-skin contact but glove-on-skin, which did not offer near the bonding experience we both wanted.

“They are lowering his life support and he's responding well to that. While they are lowering it, his body has to start producing everything itself. It's pretty neat to learn all this information. He's on an ECMO machine - an external heart and lungs. He has been on 110 kilos of support. They lowered it to 90 yesterday and then again to 80 last night. A few more days, and we're praying to have him off ECMO completely. Then, they can close his chest up. And that means, one step closer to momma getting to hold him.”

Jonah’s chest was still wide open from his first surgery on day 3. His tiny beating heart was there for us all to see. Only I wasn’t looking. Jason enjoyed the educational process of it all. He soaked in all the information and registered it. He would examine the drawings, look at Jonah’s actual heart and ask questions. I just wanted to hold my baby and I couldn’t.

“The cardiologist is still undecided about the pacemaker. He said sometimes it can take up to 7 days before the heart gets into rhythm again, so we just need to wait and see. He's not calling it just yet. Either way, we can handle a pacemaker.”

At first, I was a little saddened that he might require a pacemaker. Disappointed for about five minutes. In the whole scheme of things, what was the big deal about a pacemaker. Just give me my child and let us go on with our lives; pacemaker and all. Jonah’s life was still critical each day and I was allowed to stay at the hospital 24 hours a day, setting up camp in the waiting room. I couldn’t see life outside the hospital and did not care to venture away from that floor. I didn’t want to miss one second of Jonah’s life. Fear had driven me to become a recluse in a public setting. Anytime I stepped on the elevator, anxiety would completely take over and I could only think of returning to the CVICU. My security was the waiting room and Jonah’s room. I felt calm beside him, knowing he was still alive and with us. I felt peace knowing if something did happen, I would be right beside him through it all, holding his little hand and sneaking in a kiss.

July 24, 2009 - Jonah's 5th Day

July 24, 2009

At only 5 days old, Jonah was impacting our lives in a way we could never imagine. We witnessed his struggles and saw his fight. I remember being allowed to do the small things: brush his hair, clean his face, put balm on his lips. When I would rub his tiny, red lips, he would press his little lips together in a small pucker and it was the cutest thing I had ever seen. At 5 days old, I still had not seen Jonah’s eyes. Can you imagine? I still had not held my baby boy. I was only able to touch, kiss and speak to him. There were no diapers to change, no midnight feedings, and no crying. I wanted all those things so desperately.

“Good morning!! And it is GOOD. Jonah had another great night. They were taking him off the sedation just a bit this morning. When I kissed him this morning, he puckered up his little lips for me. I love every little inch of this amazing boy! I had them brush his "teeth" (his gums), making his mouth minty fresh for all the kisses today.”

“He's still going to be on morphine today - and will not feel any pain but they do want him to start moving a little. And he's responding well.”

I loved when Jonah was less sedated. I loved watching him wave his tiny arms in the air, as if he was praising the Lord. He would do what most all newborns did except with more work involved. He would wiggle, he would respond to stimulation and he would stick his tongue out.


“I can't kiss him enough. His swelling is going down and he's starting to look like my baby again. He's also urinating more which means the kidneys are working. His cardiologist is giving us good reports and we're so thrilled about the progress.”

“We've had a rough time and Jason and I both have been on the brink of falling apart but with God's amazing love and Jonah's overwhelming strength, we have been able to pull ourselves back together and sort through all of this.”

With heart defects, you just never know. We went to bed each night, leaving Jonah, not knowing what the next day would hold for him. Or if that day would come at all. I know several nights as Jason and I went to say goodnight, Jason would tell me through tears that he didn’t want it to be the last night. I never did either. We always, always wanted one more night with our perfect little boy.

July 23, 2009 - Jonah's 4th Day

July 23, 2009. I was sitting at a computer desk in the lobby of Arkansas Children’s Hospital trying to put into words what was wrong with my Jonah.

“God is definitely working here. On Wednesday, Jonah underwent open heart surgery for over 12 hours. I can't even begin to describe what was wrong with his heart but only 1 out of 500 pediatric heart patients have his defect.”

I was new to the world of congenital heart defects, thrown into it, virtually overnight. I didn’t see it as a life sentence, at this point. In my mind, I was believing Jonah would be fixed and we would get beyond this. We would speak about it years later, when we were explaining his scars to him or talking about how complex he was. For me, this was a temporary situation.

“Dr. Michi worked tediously on Jonah and would not leave until he was happy with the job and could consider the surgery a success. Jason and I left the hospital around midnight on Wednesday and the doctor was still with Jonah in his private room. The next morning, I arrived at 5:45, the cardiologist was already back in Jonah's room and the nurse told me that he didn't leave until 2 this previous morning. When the doctor gets less sleep than the mother, you know you are in good hands.”

I thought the world of Dr. Michi. The man is a genius and I said that many times in 2009. I would never be able to thank him enough for all he did for Jonah in those 17 days.

“Jonah was up and down all night. They had problems regulating his blood pressure. Yesterday, they found some clots in the tubing, flushed them out, and his blood pressure regulated.”

To come in and learn that your child fought all night to see the next day and I was not there to hold his hand broke my heart into a million pieces. I was only away from him for 4 hours that night and it was four of the most critical hours. I would never learn the true details of that night until I read his medical records. Chest compressions were performed on Jonah that night. We nearly lost him while we were not there. His team fought to keep him off ECMO through the night.

“Last night, Jonah had an even better night. They have taken him off some blood pressure medication and his blood pressure did not waiver. This boy is stronger than anyone I've ever met. He's a fighter. Today, he's trying to breathe over the ventilator. However, the doctor's don't want him to just yet."

By the time I wrote on this first page in his journal, several days had played out. My son was proving to be a true warrior in these few days. He was showing us what real strength was and still IS.

“I kissed him first thing this morning and his lips quivered. I think he wants to pucker up and kiss me...or lick me. :) I'll take either. His color is improving each day and he has maintained his birth weight - a whopping 9 lbs. 2 oz. The nurses adore him and tell me he's a good baby. He truly is a miracle and a blessing in our lives. He has touched so many people's lives in unimaginable ways and he's only 4 days old.”

I loved the days when I could kiss him, when I could smell him. He had some beautiful full lips. By this time, he was transforming into a miniature version of Elijah. His features were taking shape and I could see his big brother in him. He was much larger than Elijah. 2 pounds and 2 ounces larger. Elijah didn’t weigh 9 lbs until he was 6 weeks old. I remember his tiny hands would wrap around our fingers and hold on tight.

These days I will never forget and never regret. I loved Jonah from day one as much as I love him today.