Thursday, October 25, 2012

Miracle #2; "Jesus Lives in His Heart..."

 
At almost 30 weeks gestation, Hunter was delivered by emergency C-Section. I'm not quite sure (yet) on the exact timing of events but here's the way we've come to understand it from his many nurses and specialists...
 
Hunter was diagnosed in utero with a rare and life-threatening heart condition.  Along with that, he had an erratic heartbeat. His crazy heartbeat was affecting his First Mama's heartbeat and she was put on a certain medication to control HER heartbeat. This medication sometimes causes a baby to develop another potentially fatal condition called Hydrops, in utero.
 
At almost 30 weeks gestation, Hunter had developed Hydrops.
 
In short, his body was filling with fluid... and the fluid was crushing his organs.
 
 
He had to come out.
 
 
We weren't there when he was delivered... but we've heard about it... many times. From the pediatrician who delivered him. From the nurses who were in the OR. From the charge nurse. From the janitor....
 
 
Yep. Even the janitor told me about the first time she laid eyes on my baby boy.


His First Mama has sent us pictures, too... pictures we held on to for months before we could find the strength to look at them.


They are brutal pictures. He was so tiny... and black and blue... and swollen... and his eyes....


those eyes.


They spoke volumes... they still speak volumes.


"I am strong. I'm going to fight this. And I'm going to win."


"Even when the way goes through Death Valley, I'm not afraid when you, Lord walk at my side."
Psalm 23:3 (The Message)


He has wisdom in his eyes.



The NICU team was in the OR and were ready should Baby Boy need them but they were not expecting to have a baby to help.... he just wasn't supposed to make it through delivery.


He did. His Apgars continued to rise, the delivery team shocked his heart...




(writing this story, remembering, is harder than I thought it would be....once in a while I need a minute to breath...)....




They shocked his heart.



(Every time I see his tiny chest, I cringe....Deep breath. )




They intubated him.



They did all they could to help him fight.



They knew that his chances of surviving were low... not only because of the Hydrops but because of his heart condition, his prematurity, kidney and liver damage due to the pressure of the fluid, and more they didn't know about yet.



One of the first things Hunter's doctor's wanted us to understand before we committed to him (like we hadn't already!) was that he would require open heart surgery sometime in the next few years... and probably another one before he was a teenager. His heart condition would limit his activities as he got older and would always be there.... it couldn't be 'fixed' and it would never go away. He had made it this far so the assumption was that he would make it further... we just didn't know how much further and it seems to be a doctor's job to give worst case scenarios... quite often :-/


We had researched this condition AND Fetal Hydrops  (I won't include a picture but you are welcome to Google Image Search if you'd like... and if you have a strong stomach) before we made the drive to meet Hunter... we were warned by our agency NOT to research them because of how scary they are.... and their prognosis, especially combined, is almost always death.


We researched anyway... we poured over our computers for hours.


The agency was right.


Scary doesn't even describe what we saw and learned.


But there was still 'something'... some reason why we knew it would be ok... that even if the worst should happen, we still needed to meet this baby boy and he still needed a family.


We know now what that reason was... God. He had told Hannah's heart... and it would be so.


It turns out that hearing about his conditions from his doctors was a lot less scary than reading about it online. Yes, open heart surgery is serious. Yes, limited activities for a boy would be tough. Yes, the future of our family would be uncertain...


but when hasn't it been?!


He was ours.


Hunter remained in the NICU where he was born for a full 6 weeks after we met him. Due to a series of events, we made the decision to have Hunter flown by medical jet to our new home, where we would be moving as soon as possible.... or as soon as Joey could pack up our other house ;-)


We weren't able to fly to the new NICU with Hunter and saying goodbye to him was so hard... but his medical transport team (6 of them) was so amazing; they loved on him, they fed him, they even sang to him on his way to the ambulance that would take them to their plane.

It was also on this day that Hannah got to meet her Baby Brother for the first time... more on that another time ;-)


Joey, Hannah, my Mom, Joey's Mom and I got in our 3 cars as soon as Hunter left for his new NICU and drove several hours to our new home. Joey and I weren't able to get to Hunter's new hospital until late that night and we were met right away by his new Neonatologist in the NICU. Hunter's records had been sent over and they were a mess... all his doctor could tell was that this baby was very complex and he was completely amazed that Hunter had come so far. We did our best to fill in the blanks of the past 8 weeks. The Neonatologist had copies of every one of Hunter's medical records, including his original ultra sounds of his heart, abdomen, and brain, blood work results, etc.

He also had copies of the heart and abdomen ultra sounds that were done that same morning, right before Hunter boarded his plane.


Our new hospital had more cutting-edge technology than the previous so it was decided that they would re-do all of the vital ultra sounds and scans in order to know how to proceed with him under their care.

The next morning we met our Mom's and grandparents at the NICU... Hunter's great-grandparents were anxious to meet him!

Only Joey or I and one other family member could go back into the NICU at a time and we decided my mom would come back with me first since she hadn't been able to hold Hunter at all before he boarded his plane. She asked if Joey and I wanted to go back together first and we both said no.... we had been there only hours before... surely nothing had changed....


It was Saturday morning...A new Neonatologist met me and my mom as we were approaching Hunter's bed... he was practically running... he was doing that awkward "I wanna run but I'm a doctor in the NICU and it would be ridiculous if I ran" walk). A tech was just finishing up Hunter's abdominal ultra sound as we all walked in.


The Neonatologist was holding ultra sound films and a stack of papers. He told me that they had done Hunter's heart ultra-sound late last night, right after Joey and I left.... he said that the results of the scans were so shocking that he called in one of their best Pediatric Cardiologists.

And he was so shocked that he called in one of his associate Pediatric Cardiologists to review the scans for a second opinion.

And they were all so shocked together that they called in their best Adult Cardiologist.



And Hunter's heart condition was gone.



It wasn't there.



It HAD BEEN there... no one argued with that. Previous scans verified it.


But it WAS NO LONGER there.


The heart condition that would require open heart surgery... the one that would limit his activities... the one that we researched and poured over so we could understand what his future might be... or how long he might live.


THAT heart condition.... was gone.


I remember silence ... it felt like forever silence. I couldn't talk. I'm not quite sure what I did ... but I remember my Mom hurrying out of the NICU, saying something about getting Joey.


Joey came in.... the doctor said it again.


"Hunter doesn't have this condition."


More silence; we didn't know what to say...


So he put the scans in front of the black-light and showed us Hunter's healthy heart... one with a few minor differences than your's or mine... differences that he could and would live with... live a long life with.


That's it.


What the doctor said next is what snapped me out of my shock....


"I came in early this morning and was caught up by Hunter's admitting doctor. There's no doubt that this baby's life itself is incredible. We know what was done to save his life when he was born but this, there's no medical explanation for this. He truly is a miracle." I asked him to explain it again and he said that sometimes doctors can't explain it away.


And we broke.


We had cried so many tears over this baby. We had been prepared a couple times for his death, we had envisioned a future that was much different than we had ever considered that it might be, and we had spent hours and hours on our knees begging God to keep him strong... to help him fight... to guide his doctors....

to perform a miracle in Hunter's life.

And like so many other times, when we've been on our knees, desperate to hear His voice...


He did. He heard our prayers and answered them mightily.


Hunter will always have a Cardiologist. Always. His name will always be associated with that heart condition... because he had it. We have regular routine visits, do regular 24 hour events recorder monitors, and regular ultra-sounds .. but there is absolutely no reason to believe that there will ever be surgery or cause to worry in his future.

I still hold my breath during every one of those appointments.

And I still cry every time his doctor tells me how happy she is with his progress... and what a miracle he is.

More than once over the past few months, Hannah has seen Joey and I cry or jump for joy or express any other number of emotions related to her little brother. I'm pretty picky about what appointments, if any she comes to with us (and there are many appointments each week). We do what we can to be honest with her and tell her in words she'll understand how God is working in Hunter's life... and in turn, in ours.

Hannah came to Hunter's last Cardio visit with me and it was one of the times when they put a 24 hour monitor on him. Hannah was 'admiring' him when we got home and asked me what all of the cords were for...

"Hunter's heart was sick for a long time and the monitor will tell the doctor if it's getting better."


Hannah replied...

"Hunter's heart is all better, Mommy because Jesus lives in his heart."

Faith like a child. Faith like Hannah's.



"That Christ will live in you as you open the door and invite him in. And I ask him that with both feet planted firmly on love,  you'll be able to take in with all Christians the extravagant dimensions of Christ's love. Reach out and experience the breadth! Test its length! Plumb the depths! Rise to the heights! Live full lives, full in the fullness of God.   God can do anything, you know - far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us."
Ephesians 3:17-20 (The Message)




Hunter will meet his big sister next... ;-)


6 comments:

  1. Absolutely bawling right now! Praise God! What a beautiful miracle!

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  2. Lindsay, I am speechless! I know God is a miracle-working God, but it is still too incredible for words. I needed your story right now. I have had two instances lately where I have known of two young children facing very serious health problems. There parents are so admirable like you with very strong faith in God. One is a 4 year old boy who is the nephew of one of my dear friends and was just recently diagnosed with a terminal and untreatable brain tumor. He has pretty much been sent home with hospice care to live out the remainder of his life. I am trying to hold onto my faith in God's healing, but I admit I falter. Your story renews my hope for that family.

    Also, I think I was meant to find your blog. I don't remember how I did...maybe through Kelly's Korner through a link up? I live in Charlotte and have a big heart for adoption as a child of the process. Thank you for telling us your story!

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    1. Oh and Hannah is simply an amazing child! Her love for Jesus definitely shines through, and that picture of her kissing baby brother...tear jerker! :-)

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  3. I contacted you back in June about adopting my baby, and I never heard back from you. Well. It all makes sense now! It is so obvious that Hunter was the miracle meant for you, and more importantly that you were the miracle meant for him. Congratulations on your family, and praise God for the miracle of Hunter's healing!

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  4. crying over here! what a beautiful story. Joey and my husband Jeremy grew up together so we have enjoyed following your story. what a miracle! we are having a third baby in a few weeks and this just reminded to keep it all in the Lord's hands. He does more than we could ever imagine! wow, what a story Hunter will always have.

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