Plans

Jeremiah 29:!1 says, “For I know the plans I have for you, says the Lord, plans not to harm you, but plans for a hope and a future!”

Maddox was born on July 11, 2014.  A pre-natal ultrasound showed us that Maddox had 2 potential issues with her heart.  After many doctor’s visits, we learned that she would have complete AVSD, Atrial Ventricular Septal Defect.  Complete AVSD is also called a “Cushion Defect,” because there are no separated chambers of the heart.  There is an indention in the middle which looks like a cushion.  We were asked time and time again by medical professionals if we wanted to terminate the pregnancy, and we answered with a resounding, “No” each time.

Maddox was whisked away from the delivery room to the NICU after I held her and kissed her sweet, little face.  We met with cardiologists the following day.  The doctor walked in and said, “Well, Maddox does have AVSD, but it’s an unusual kind, and not as bad as we thought.  I told him I wasn’t surprised.  When I found out I was pregnant and our baby would face different challenges, I told God I knew she was His and I gave her to Him.

We visited with a cardiologist every month for Maddox to be examined.  Maddox did have a partial AVSD.  She had a hole between the 2 lower chambers of her heart, the ventricles, and a cleft mitral valve, BUT she DID have 4 chambers!  We knew she would need open heart surgery, and thought it could be as early as when she was 3 months old.  However, her heart functioned in its own way, and she didn’t require surgery until she was around a year old.  Until a year, a baby’s tissue is so thin we were told stitching anything would be like trying to sew through a kleenex.  On May 26, 2015, just weeks before her first birthday, we arrived at the hospital very early for Maddox’s first open heart surgery.  The surgery lasted approximately 6 hours and successfully repaired the hole in her heart, but the mitral valve appeared to still have leakage.  Initially, post-op echocardiograms showed Maddox to have “Mild” leakage from the mitral valve.  After a LONG 6 weeks, her leakage had been determined to be moderate.  Leakage is classified in this order, Trivial, Mild, Moderate, Severe. 

Maddox was discharged on my birthday, July 3, just 8 days before she would turn one.  We were so thankful to be at home, and were able to celebrate her 1^st birthday with family and friends.  She had been practicing holding up 1 finger for weeks in the hospital, and she really enjoyed every bit of her celebration! 

As time passed, I became so worried about Maddox. She would play, smile, eat (cake and spaghetti with meat sauce, especially), but soon Maddox began to grow tired when she play and just wasn't the energetic baby she had been. Even after the repair of the hole between her ventricles, she wasn’t the baby she had been prior to surgery.  Every night, I whispered a prayer in Maddox’s ear and ended with, “Father, please heal her heart.”

After a Summer of heart caths and echocardiograms, Maddox’s cardiologist told us it was imperative to go back in and repair the mitral valve.  Maddox would not survive without intervention, and could possibly have to be placed on the heart transplant list if her valve couldn’t be repaired.  Our surgeon told us that the only 2 options she had would be to insert an artificial valve or to repair Maddox’s own.  As time grew close, the surgeon told us Maddox couldn’t have an artificial valve, because hers was not big enough.  Maddox’s own valve would need to be able to be repaired.

On October 29,2015, Maddox had her second open heart surgery. Dr. Karla Christian, the surgeon, had her nurse call us every hour with an update.  We knew every step that was taken.  The call that we cherish the most was that YES, MADDOX’S VALVE COULD, INDEED, BE REPAIRED!!!  Dr. Christian walked out and said had she not been the one to perform surgery the first time, she wouldn't have known that an attempt had been made to repair Maddox's mitral valve, as there was NO scar tissue. She told us that while the absence of scar tissue made her job so easy to repair it this time, she was concerned that maybe Maddox's tissue wasn't healing properly or something that wasn't right (although, the patch between the ventricles had healed beautifully). The attempt to repair the valve in May was reported as leaking "mildly" at first but over the course of time got worse. Maddox was said to have severe leakage from a cleft mitral valve prior to surgery. Remember, leakage can be classified as trivial, mild, moderate and severe. The post-surgery echo showed Maddox's new repair to make her leakage TRIVIAL this time.

Dr. Christian stopped by several times post-op to say how wonderful the repair was doing, and her words were, "Trivial is the closest a human repair can be to the work of God." "The echo shows there is NO leakage, but we call it trivial, because I know there has to be leakage SOMEWHERE."  However, don’t let me lead you to believe that Dr. Christian didn’t live up to her last name.  She talked to me about praying.  She rounded on Sunday mornings while we were inpatient at Children’s Hospital, EN ROUTE to church services.  She gave me her personal cell number to contact via text or call at ANY time.   She loves Maddox, and calls her a Wonder Baby. 

I spent many days and nights crying out to God, asking Him why it was all happening, why Maddox felt so badly, why her heart couldn’t have been fixed during the first surgery, and a thousand other whys. Sitting in PCICU for many days while Maddox was heavily sedated and healing, I had time to process things that we had been told. "There is no scar tissue from the attempt to repair in May." "The absence of scar tissue made my (Dr. Christian) job much easier. "Trivial is the closest a human repair can be to the work of God." “We say trivial even though we don’t see any leakage, but I know there has to be leakage SOMEWHERE.”

We spent another 6 weeks in the hospital.  We had ups and downs, but FINALLY got to go home 2 weeks before Christmas.  Maddox visited the cardiologist in January and the echo still showed the leakage to be trivial.  We were told we didn’t have to come back for 3 months!  Maddox has felt better and better as time passed.  Dr. Thomas is Maddox’s cardiologist.  We didn’t really know anything about any of the cardiologists when we began this journey.  We honestly just chose one based on the fact that we could have appointments at a local office instead of going downtown.  As we got to know Dr. Thomas, his stories of church homecomings with his mom, his spoken belief in Divine healing and his transparency with us regarding his relationship with the Lord were all I needed to figure out that WE had not just “chosen a cardiologist.”  GOD chose HIM for Maddox! 

Our most recent appointment with Dr. Thomas was on Monday, April 11.  Appointments begin with an echo. The guy who performed the echo told us that he really wasn’t the “official” person to read the echo, but he said, "While they have classified the mitral valve leakage as 'trivial,' I can't find any...but that may just be my machine." (Hmmm. 😊)   Next, we move to an exam room where a nurse asks us the same questions we’ve answered a thousand times before, lol, Maddox is weighed, her height is measured.  Maddox has gained over 5 lbs since surgery and has grown over 2 inches! Then, we wait patiently for Dr.Thomas to come in and tell us what he sees on the echo, talk about how Maddox has been doing and talk about what the next step will be.

This time, in passing as Dr. Thomas was going to see another patient before us, he stuck his head in the door and said, "She's healed. Go home."  We waited our turn to hear more, but he meant what he said.  Maddox’s echo is still showing the mitral valve to have “TRIVIAL” leakage.  Other parts of her heart that had been affected by the poor heart function prior to the repair are improving.  He has begun to take away medications that she doesn’t need anymore.  We will go back in another 3 months and begin weaning more medications.  The truth is, GOD has healed her heart!

God's timing is ALWAYS perfect. His plan is ALWAYS perfect. He is ALWAYS faithful.  I firmly believe God didn't want Maddox's mitral valve to leak mildly or moderately as it was said to do following the first surgery. I believe God’s plan was for Maddox to have a mitral valve that functioned with "Trivial" leakage....the least amount repaired by human hands...the closest human work can get to God's work. AND while Dr. Christian thought it was odd that there was NO scar tissue, I believe God intended it that way to make her work easy. AND while Dr. Christian says there has to be some leakage SOMEWHERE, I'm not so sure.

I cannot tell you how humbling it is to have people praying for you all over the world.  There is more to Maddox’s life story that I don’t have time to share this morning and she is only 21 months old!  In this short time, I have seen families come together because her story has touched them.  Maddox can make my 15 year old smile and do things a mom has a tough time getting a teenager to do.  My middle child is 12 and loves children, but I have seen qualities developed in her in these last 21 months that I believe are showing her a road she would like to travel for her future.  I could go on and on. 

In the last year I have learned so much about patience, mercy, prayer, love and faithfulness.  Maddox’s story is an amazing testimony of God's loving kindness that I will shout from the rooftops, writing down and sharing it in every way in hopes that His message, the message of Jehovah Raphe, our Healer, will be shared with many.  I'm taken back to a song that I would sing with my cousin, Esther, as a child...He's still working on me...and thank goodness, He NEVER stops! ❤