I believe in miracles {part 2}

So the other day I told you about a miracle that I was personally witness to. Today I’ve got another one for you. It didn’t happen to me, but to someone I know, and I saw it play out…on Facebook, naturally.

You see, I have a friend named Julie, who is a faithful reader of this blog. We went to college together and she is a close friend of Emily’s sister Anna as well. Of course, we are also Facebook friends. About a year ago I saw on Facebook that Julie had a new niece, named Cheyenne Joy (Cheyenne’s mom, Julie’s sister-in-law, is also named Julie. Just FYI, in case things get confusing here.) But I also noticed right away that things were not all well with the baby. A quick look at Julie’s posts told a story…Cheyenne needed a lot of prayer.

Now, I have a confession to make. I could barely look at Julie’s posts about Cheyenne. As a mom, I find hearing about or knowing about any child who is near death to be very, very hard. You know what I mean? Because it could be me. It could be my child. My mind goes there quickly, and I want to block it out. So I kind of side-glanced at Julie’s posts. Praying for this baby without being brave enough to dive in and get enough details to really feel the pain. Looking back, I know that was wrong of me. Let me tell you Cheyenne’s story and you’ll see what I mean.

Cheyenne Joy Weber was born on April 18, 2013 at 8:05 PM. It’s a moment her mom Julie calls “the stillest moment of my life”. It was immediately apparent to her parents that something was not quite right with the baby; she wasn’t crying and the medical staff was hovering. When the doctor first came in to deliver Cheyenne, he had said her heart rate dipped and he was concerned. At some point as she was rushed off to the NICU, her parents were told that Cheyenne had lost oxygen during birth/labor and that she would probably have some brain damage. A couple of days later, after tests and an MRI, a doctor sat with them and said about their little girl: “This is as bad as it gets. Her brain stem has been damaged.” He gave them little hope; he did not expect Cheyenne to live at all, and if she did live, she would most likely be in a vegetative state. Her little body was currently not capable of breathing or functioning on its own, because the brain was so badly damaged.

{Can you see why I held this story at arm’s length? It’s so, so hard. Can you imagine what these parents felt? Going through a normal pregnancy, expecting the same joyful outcome they’d had with their first daughter?}

For the next couple of weeks as Cheyenne hovered between life and death in the NICU, her parents had to make some tough decisions. Like, once they took her off the ventilator, whether to re-vent or not. Similar decisions about medications and feeding…terrible decisions no parent have to make. Julie and her husband Cory felt that God was guiding them through each awful choice. They could feel the prayers of so many friends, family, and friends of family (Facebook friends!) praying for them and for Cheyenne.

They knew Cheyenne couldn’t stay in the NICU forever, and after a few weeks decided to go to “The Children’s Home”, a hospital facility geared towards helping parents of children with disabilities or long NICU stays transition to home life, but also palliative/hospice care. This would give them a chance to love on Cheyenne, stay in the same room as her, hold her, feed her, enjoy her for as long as they could. They honestly went there thinking this is where they would say goodbye to their little girl. Her mom says she prayed and prayed Cheyenne would just survive the ride there, then survive the first night…and she did. She had a rough night, though, and Julie was sure she was going to lose her. Then, as a nurse was changing her diaper, Cheyenne began to cry.

It was the first time she had ever cried. Her brain was functioning enough that she could cry – that in itself, a miracle.

Cheyenne survived that first night and kept on living and improving slowly. Her mom describes the rest of their time in the Children’s Home as a roller coaster. Despite Cheyenne’s improvements, her neurologist was not optimistic because of the amount of brain damage she had. Her mom says, “He said there was probably only two outcomes here, either her brain would stop growing or it would be filled with cystic pockets making it impossible for any type of functions with the amount of damage she had.”

But she lived on, day after day. Finally after about 10 days in the Children’s Home her breathing had improved so much that her mom dared ask her doctor, “Are you still concerned with her passing away soon or at any given time?” And he responded: “Let’s just say, I don’t go home worrying that I’m going to get a phone call about Cheyenne.”

And here is a miracle within a miracle, my friends. On May 25th, the baby who wasn’t supposed to live went home to her own house with her mom and dad and big sister. They didn’t  know what level of function she would have, or  how long she would live, but she was well enough to be HOME with her family. Miracle!

A few weeks later, at 8 weeks of age, Cheyenne had another MRI. it showed a “global volume loss” of brain tissue, meaning she was missing tissue around the outside of her entire brain. Although this sounds bad, it was actually better than what they thought they would see. Before, where they had seen NO living brain tissue, they now saw that all the brain tissue that was left was indeed living. And you see, DEAD brain cells do not regenerate. So the fact that she had living tissue mean there was a much better chance for something called “plasticity” where living cells can learn to take on the functions of the dead cells. Would her brain have plasticity? No way to tell. They prayed and hoped, happy to have their precious girl alive and with them.

Meanwhile Cheyenne began receiving therapy, and as the months passed, each therapist and doctor continued to be impressed with Cheyenne’s development. (And friends and family, they prayed. Continuously.) At Cheyenne’s 5 month neurologist visit, her doctor was very pleased with her progress but still didn’t want her parents to have super-high hopes about her level of function. Another miracle at this point was that she had weaned off all medications (she had lots of seizures after birth and was on medication for that for quite awhile as well as some others.)

Three months later, at her 8-month neurology appointment (her mom says she was actually closer to 9 months by the time the appointment came around), her neurologist could no longer hide how pleased and happy he was with her progress. Julie asked him if he had ever expected her to be doing so well and he sharply said “Nooo, Nooo” while shaking his head. He then said he wouldn’t need to see her again for 6 months instead of the usual 3 months. Then, Julie added in that Cheyenne had recently begun clapping. Her doctor was pretty much shocked…and based on her ability to perform that cognitive skill, he discharged her as a patient. The child whose brain was so badly damaged it wasn’t supposed to be able to sustain life. Discharged from neurology at less than nine months old.

MIRACLE.

Since that appointment, Cheyenne continues to do great. She just turned one year old with MUCH celebration, this baby that wasn’t supposed to live past a few weeks. Her mom says she is meeting milestones very close to if not on target, and is a happy little girl…FULL of life, personality and preferences. Her therapists continue to be very pleased with her progress, and her family knows NONE of this would have been possible without God moving in a miraculous way.

“This is as bad as it gets.” They said.

One year later, I would say the opposite is now true. Praise the LORD for this miracle!

Thanks Aunt Julie and Mommy Julie for letting me share Cheyenne’s story. And I’m sorry I wasn’t brave enough to follow more closely from the beginning. If anything Cheyenne has taught me that you can’t appreciate how bright miracles shine  if you don’t acknowledge how dark things have to be for a miracle to be possible.

I believe in miracles. Do you?

(As you may imagine, this is actually a very abbreviated version of Cheyenne’s story. You can read the whole story by her mom Julie here.)