Monday, January 21, 2013

Miracle #4; Part II

If you're new to Hunter's story, you can head over here to catch up! Remember that in order to read from the beginning to end, you need to scroll all the way down to the very last post... which is actually the first ;-)
My husband is pretty incredible, is he not?! His post on Audacious Faith and the beginning of Miracle #4 exemplifies who he is as a Husband, Daddy, and man... his faith is audacious. His patience is unending. His presence is calming... and I have no idea how Hannah, Hunter, and I got so lucky! He is a man after God's own heart.
I also can't tell you how much his support means to me... he supports me as a mom every day and makes so many sacrifices so I can be home with our kids.... but he also supports ME; who I am. He knows how much this blog means to me.... and how difficult it is at times, too. He encourages me... and he challenges me to be better... to stretch and grow. I don't know where I would be without that man... and the fact that he wrote such an amazing post for my blog is the best gift he has ever given me!
If you missed Part I of Miracle #4, head over and read Joey's post here.
Having a baby in the NICU is not easy. In our 6 weeks living away from home, I struggled to balance my time with Hunter and my emotional investment in him and his medical needs with a life that needed to remain somewhat 'normal' for Hannah. Joey did his best to visit when he could... but I got a real taste of what a single mom might go through on a daily basis.
We knew we were close. Hunter had hit all of the milestones he needed to in order to be discharged; he was gaining consistent weight, maintaining his body temps, recovering from his apnea's on his own (we were already prepared to take him home on an Apnea monitor so there was 'some' leniency), and he was getting better by the day with drinking his bottles.
While no one had specifically told us that Hunter was nearing discharge, the past week had been full of more blood work, follow-up ultra-sounds, and evals than normal... all indicators that discharge was upon us. I had done my best to be at the hospital for EVERY test, every scan, every specialist visit, and for the on-going arrival of test results. His doctors were doing everything they could so that we could take Hunter home and have a seamless transition with up-to-date records for his new team of specialists.
(I was told last week at an office visit that Hunter's records are currently over 1,400 pages long, if that tells you anything about the time it took to get current stats and info on our boy ;-))
We had been told that discharge usually only comes with a day or two notice and sure enough, one Friday night, the doctor discussed his plans to discharge us Saturday afternoon. Joey was already planning on driving up after work that night so I called our moms and we made plans for the next day....
As he mentioned, Joey slept in on Saturday morning. He hadn't arrived until 2am so I was more than happy to let him sleep..... and I snuck over to the NICU to spend a few quiet minutes with our baby-boy before the doctors did their rounds and more tests began.
I scrubbed in and walked down the loooooong hall to Hunter's room. I said good morning to every nurse.... friends. I remember feeling so conflicted.... I wanted more than anything to go home.... but this place had become such a huge part of me that it was difficult to imagine being anywhere else.
Plus, those nurses and doctors... they were Hunter's family before we met him. They were the first voices he heard, the hands that saved him, the ones who prayed for God to save his life, and the hearts that grew to love that tiny orphan.
They were part of his first family.
I walked into Hunter's room and headed over to pick him up. I was about 2 steps away from his crib when I heard hurried footsteps behind me. I turned around and was face to face with his pediatrician. I knew the NICU schedule well....Rounds wouldn't begin for another 2 hours and your chance of seeing ANY doctor before Rounds was nill.... unless something was wrong.
He asked me to sit down.
I was already sweating and was doing my best not to give in to the panic I felt in my chest.... it was the kind you can taste; sheer panic.

I left Hunter in his crib and took a seat.... I knew he would be safer out of my arms this time.
Doctor P proceeded to tell me that some of Hunter's discharge tests had come back and they had found a few things that they hadn't seen before in his results. He said that he had spent the whole night researching and talking to specialists to determine what his results could possibly mean.

He meant it. He looked like he had been up all night.
"I don't have good news. I wish I did. But I don't. I don't quite know how to say this and I really wish your husband was here with you but I have to tell you....Hunter will have a very short life. I will stick to my plan to discharge him today but have called a meeting in about 2 hours with you, your husband, and some of Hunter's doctors. We can tell you more at that time but I wanted you to have a heads up. I wanted to tell you myself."
I texted Joey... "You need to get over here. Now. Please hurry."
He told me what he could about Hunter's tests. He had only had 4 patients in his entire career who had a similar diagnosis. I had to ask...
"How long did they live?"
... "None of them made it home."
He said more but my head was in my hands.
Looking back, I realize how difficult it must be to have to tell a parent that their child will soon die. I don't envy him. I can't imagine how HE must have felt and how uncomfortable it must have been for him.
He walked over to me and put his hand on my shoulder.
"I'm so sorry. Do you have any questions? I'll do my best to answer them now, if you do but I'll be honest... I don't have all the answers. I actually have very few... we just don't know much about this yet."
I looked up at him... and asked the hardest question I've ever asked someone....
"How long?"
"We can talk about that more at our meeting this morning. Can I call someone for you? Will someone be able to sit with you?"
And Joey walked in.... out of breath.... panicked.
"What's wrong?"
Let's go back to the day we met Hunter.... Joey held him, looked at me, I asked him the question with my eyes... "Is he ours?!"... and he nodded.
This time, he looked at me with the question in HIS eyes... is he going to be ok?
I shook my head.
Dr. P tried to summarize all that he had told me a few minutes before.
I couldn't hear it again. I walked out of Hunter's room and ran down the loooong hallway I had leisurely strolled only moments before.... past the many 'pods' that Hunter had lived in, and past the nurses who had become my friends and family.
I called my mom. She was due to arrive later that night and she answered right away...
My mom is my best friend. She always knows what to say... always. She has NEVER been without words when I've been in crisis. She's calm and level-headed and always has the perfect Scripture as a reminder for me of God's goodness and grace.
Not this time.
We sobbed together. I could tell she was trying to contain her emotion so she could help me off my cliff but hearing her cry only helped me. Joey and I would find each other when we were both able to grieve with and for each other but for now, I needed to know that I wasn't alone.
"Do you want me to tell Daddy or do you?"
I walked back in to the NICU, carefully avoiding eye contact with the nurses and staff who had come to know me so well...
When I walked in to Hunter's room, a team of specialists had already gathered around Hunter's crib and had begun their portion of his discharge.
No one said anything when I walked in but they moved aside and let me pick him up. I sat down and cried. And they let me. When I was done I placed him back in his crib and watched from the side as his doctors continued their paperwork and assessments.
Joey walked in.
His shirt was wet and his face was red.
He hugged me.
We walked out into the hall and met Dr. P again. It was time for our meeting.

It was time for us to find out how long we had left with our new baby.
Time moved so quickly. Hunter's results were further explained to us and we tried our best to understand so many terms and phrases that were foreign to us. We both took notes. 2 of the staff who were in the room with us were ladies that I will always consider friends. Neither of them said a word and none of us made eye contact. I knew they were hurting, too.
We were told what to look for over the next few days, weeks, and/or months... changes in eating and sleeping habits, weight loss or gain, fussiness, mood changes, and so much more. Joey had already made a plan to have Hunter flown home that afternoon and his transport team was on their way. We made a plan and contacted the team that would greet Hunter at his new NICU. His records were sent over via Internet and a paper copy of them was sent with Hunter on his jet.
Joey and I left the meeting and got on the Internet from our phones so we could begin the process of translating all that we had written down.

That was a mistake. "Googling" always seems to be a mistake. 
Within hours, our moms arrived, Hunter was discharged into the care of his transport team, he met his big sister for the very first time, and was on his way home.
We had envisioned this day for weeks.... it was supposed to be happy and joyful and the start of something new!
But all we were was tired and scared.
We packed up and started the drive home with Hannah and our moms.
Our new house wasn't ready to move in to yet so we went to my aunts house, had dinner, and around 8pm Joey and I headed over to the hospital to see our baby. Hunter had arrived around 2 and I had received hourly phone calls from his nurses who only wanted to update us and tell us how sweet our boy was....
but we already knew that ;-)
We met Hunter's admitting pediatrician and were told what to expect in the next couple days at the new NICU. They had his massive records but had much better technology and wanted to re-do some of his previous tests in order to get more accurate information. They scheduled most of his testing for that night or the next morning and we were told that we would be kept up to date as results came in.
We took our grandparents and my aunt to the hospital the next morning so they could each take their first peek at the baby boy they had been praying for for so long.
My mom and I went in first...
I described our time in the NICU here....
but I left out Miracle #4.
Hunter's doctor had already blown us away with his news about Hunter's heart and our next big question had to do with his life expectancy in regards to this new diagnosis.
"We know what to look for but we want to hear it from you and your team. Will you repeat tests? Is there anything we can do to slow this down? How long will be we able to have him at home? WHEN can we take him home? How will we know when we need to bring him back will we know when his time is ending?"
Questions no parent ever wants to have to ask.... and my heart breaks for every parent who has ever had to or ever will.
"That's another thing we need to talk about. I went over all of the test results with my team and re-did some of them this morning. We can see where his doctors might have thought that A,B, and C equalled their diagnosis .... but we all disagree. We'll do more testing so we can be absolutely sure but.... your baby was a preemie. Because of that, he's not normal... his anatomy and chemistry isn't normal because he shouldn't even be born yet. We can't compare Hunter to what's 'normal' because we have so much more to take into account....
On paper, Hunter is a mess. I spent 2 hours pouring over his charts before he arrived and I met the transport team as soon as they got here....I expected to see a very different baby; a sick baby. What I see is a healthy, but tiny baby who has some growing and healing to do but is otherwise doing very well.
Hunter is not going to die soon. He is a miracle, if I've ever seen one and he has a long life to live."

And we broke.... with relief and joy but also confusion... so I asked the Doctor...

"How do you explain this?! How did all of this happen?!"

And he said...

"Sometimes we... us doctors... we don't have all the answers. Sometimes... not often... but sometimes God just does this."

In that one day we had grieved the loss of our son and had celebrated the miracle of his life.... again.

It felt as if those few weeks of our lives were on repeat.... we relived those similar moments over and over and over again.

I look back now and wonder how we trusted anyone.

I wonder how we lived through those moments of sheer terror.

How we survived what seemed like an eternity of bad news.

And then I remember ...

we didn't.

We didn't trust anyone and we didn't live through it and we didn't survive.

God did.

Six weeks earlier, as we stared into the too-old, too-wise eyes of our precious new baby boy, God asked us to trust HIM....

With our future. With our family. With our lives.

And we did.

Not because it was comfortable or because we were prepared...

but because He asked us to.

Our son.... our 2 pound, 13 ounce miracle... was here to stay. For as long as God lets us have him.... he is our's...

He is On Loan From Heaven.... and he's our's for just a while.... for just a long while :-)



  1. Thank you for sharing your amazing story. Your faith is so inspiring.

  2. You did it again! Got me in tears but so very thankful for God's amazing miracles! You couldn't have ended that post better than with the picture of those amazing smiles! :-)

  3. What an amazing part to Hunters story. A true miracle. I can not fully imagine the fear and terror you guys felt every minute, every second.

  4. This sounds more like a misdiagnosis by inexperienced doctors than a miracle. I'm so glad for all of you that the first doctors were wrong.


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