Restored

Get ready for a very long-winded post. You may as well prepare yourself a hot cup of coffee or tea, find a cozy spot on the couch, and curl up with a warm blanket, because if by chance you stick it out to the end of this post, you’re gonna be here a while!

I’ve attempted to write this blog post for several months now and, to be honest with you, I kept finding myself avoiding it. Cora’s NICU story. It is a story full of beautiful miracles and crushing heartache. Highs and lows – the roller coaster, if you will. It is a story that I sometimes find hard to recount the details of. Not because I can’t remember, but because it puts my heart right back in the thick of it. It is part of her story that she will thankfully never remember. She won’t remember how uncomfortable and how much work it was for her to breathe. I, however, will remember every breath. I sometimes feel the emotions as if it had just happened yesterday. The heartbreak gave us the opportunity to witness the miraculous gift of God’s mercy and grace and that too is something I will not just remember earth side, but I’ll carry it on into Eternity with me until I bow at His feet and thank Him for those gifts.

As I shared in a previous blog post, Cora’s water broke at 23 weeks. We were informed then that due to her lack of amniotic fluid, her lungs would likely be sicker than Jane’s. When they were born at 25 weeks, initially, Cora was breathing more easily than Jane. Within the first week of life, Cora was extubated and went a few days without the need of a breathing tube. All that work it took her little body to breathe caught up with her though, and she was reintubated. We were told not to be alarmed because this was very normal for a 25 weeker. As time went on, Jane was steadily requiring less support from the ventilator and Cora was steadily requiring more. For any of my fellow NICU mama readers, Cora was slowly getting further and further away from “room air”, that coveted number we all wanted to see on the vent: 21%*

Every morning when I went up to the NICU, I would say good morning to Cora and Jane, get a quick run down of how their evening went from the bedside nurse, and then I’d wait for the doctor and medical team to come in for rounds. Before I would hold the girls, I would take my Bible and prayer journal behind the privacy curtain to read and pray while I pumped. One morning, prior to Cora being suspicious for pneumonia, I was reading the account of Jesus raising Lazarus from the dead. In this account, Lazarus had fallen deathly ill. Jesus was out of town, so they sent for Him to come heal Lazarus. In my prayer journal, there is a section to write “Today’s Verse”. I usually write down a verse that stands out to me from whatever passage I read before my prayer time. For no distinct reason, on this day I felt impressed to write down John 11:4:

“This illness does not lead to death.

 It is for the glory of God,

 so that the Son of God may be glorified through it.”

I didn’t feel a strong inspiration from this verse when I wrote it in my journal that day, other than I may have replaced the word “illness” with “prematurity” as I asked God to bring my daughters through this. Again, at this point, I had no inkling that Cora was getting sick. I had no way of knowing I’d be clinging to this verse the very next day.

The following day, Cora was suddenly requiring 60-65% oxygen concentration on the ventilator. Remember that “room air” number I mentioned? Room air is the air you and I breathe without any oxygen supplementation. It is air with an oxygen concentration of 21% and we were now very far away from that number. I vividly remember the conversation I had with the nurse practitioner when she came in to tell me they were going to take chest x-rays and do lab work to “rule out” infection. When I began asking questions and she began to speak of pneumonia I could feel my chin start to quiver. I imagine it is incredibly difficult to be in a position where you must relay undesirable news such as this to the parent of a child who is already fighting to live, so I always tried to keep it together when they gave us an update. But this time, I simply could not “keep it together”. Chris was back to work at this point, and I was up at the NICU by myself. I had no idea what Cora having pneumonia meant for her. All I knew was that sometimes adults, with fully developed lungs, don’t make it through pneumonia, so my mind was immediately going to the worst-case scenario. Could Cora’s premature body survive pneumonia? I tried my best to blink back the tears and steady the brokenness in my voice as the nurse practitioner asked if I had anymore questions. She kindly placed her hand on my shoulder and said “I’m sorry. We don’t know for sure that she has pneumonia; it could just be that Cora’s having a bad day.” I thanked her for her time and after she left, I went into my private bathroom and sobbed.

After the results from Cora’s blood work and x-rays were reviewed, the neonatologist came in and confirmed that Cora did in fact have pneumonia. It was bacterial so they started her on strong antibiotics, changed her vent settings, and explained it would take a good couple of weeks before they could expect her to get back to baseline with her breathing.

When Chris got up to the NICU, I looked at him and said “It’s hard enough – this whole NICU thing – why did God allow her to get sick, too?”. Chris is often stable as a rock. There isn’t much that unsettles him. He is not a chronic worrier. Can you see how he is perfect for me? I do enough fretting for the both of us, and he has a way of steadying my heart and reassuring me that we can rest in the Lord and trust in His promise to never leave us. As we sat on the couch in the girls’ NICU room, I opened my prayer journal and was reading my journal entry from the previous day. When I read that day’s verse I had written, the tears began pouring down my face. Then the following dialogue unfolded in my mind:

Me: Will Cora survive this?

God: This illness does not lead to death.

Me: Why Lord? The NICU is hard enough.

God: It is for the glory of God, so that the Son of God may be glorified through it.

Me: **ugly crying face**

The Lord so graciously gifted us the answer before we even asked. What a gracious Father.

The following day we learned that Cora had MRSA pneumonia. They immediately put her under “isolation precautions”. Each time anyone touched Cora they had to gown, glove, and mask. Since she shared the room with her sister, Jane, we also had to follow the same precautions. It felt a little ridiculous that we had to do this since the day prior to Cora’s pneumonia diagnosis we had just held the girls together. For a couple weeks, they asked us to put gloves on before touching her. It felt sad to me that while she was sick she only felt the touch of her parents through cold gloves and scratchy gowns.

Again, my mind went racing with worst case scenarios when we were told she was positive for MRSA. I knew that MRSA was essentially everywhere, but what did it mean to have this bacterial infection in your lungs? I knew that MRSA staph infections could be difficult to treat because of their resistance to antibiotics. So again, what did this mean for an immunocompromised, premature baby with underdeveloped lungs? Somewhat afraid of her answer, I asked the doctor if preemies survive this type of pneumonia. With a shrug of her shoulders and furrowed brow she replied, “they can”. While this was a better answer than what I was conjuring up in my worried mind, her lack of confidence didn’t instill much peace of mind. She went on to say that it would be a long road to recovery for her. They would start her on some strong antibiotics (which also put her at risk of other things, like hearing loss), adjust her vent settings, give her a blood transfusion, and hope that she would begin turning a corner. When the doctor left, I wanted to fall apart. It’s not that I forgot the scripture God had given us a few days before, but I began to question if I was somehow twisting a coincidence into what I wanted to be true. I began to doubt. Not God, but my perception. I cried the whole commute home that evening, begging that God would not allow Cora to die.

That night while I was spending time with Asher at home, we were watching a Bible story cartoon. It was about the apostle Paul’s shipwreck at the Island of Malta. In this account, Paul encourages the other passengers on the boat, telling them not to worry, that he knew everything would be okay. The next morning (Thanksgiving Day) when I was going up to the NICU I kept thinking about that story. I thought “I wish I held that same unwavering confidence that Paul held onto during that shipwreck. Here they were in the midst of a storm and yet he was so sure that God would bring them through it.” I knew I wanted to read the account in my Bible once I got up to the girls’ room. In Acts chapter 27 it explains that the ship Paul was on had been in a terrible storm for many days. They threw many of the ship’s cargo overboard, including their food. They had gone so many days without food that they began to question if they would survive. That is when Paul stood up and said the following in verse 22-25:

“Yet now I urge you to take heart,

for there will be no loss of life among you, but only of the ship.

For this very night there stood before me

 an angel of the God to whom I belong and whom I worship, and he said

‘Do not be afraid…’

So take heart, men, for I have faith in God that it will be exactly as I have been told.”

Here I found myself in awe again, that God confirmed His word and His answer to my questions:

me: Will Cora survive MRSA?

God: There will be no loss of life among you.

me: Am I misinterpreting Your Word to fit the outcome that I want?

God: It will be exactly as you have been told.

With grateful tears streaming down my cheeks, I looked out the window up into the sky and said “Okay, Lord. I think I heard you correctly this time.” It was obvious He was confirming what He had already told us in John 11:4, that this illness would not lead to death. I clung to these scriptures for the next 6 months and even still today.

Over the next few weeks, Cora would make slight progress from a respiratory standpoint, but then often regress again leaving her unable to make it back to baseline. We were so thankful the MRSA was treated and that it did not turn into sepsis for her. We were also told how encouraging it was that she was still active, fever free, and tolerating feeds. At a certain point, the doctors commented that she just wasn’t making the respiratory progress they would have hoped to see by now. They kept doing echocardiograms to check for suspected hypertension, which thankfully they never found. They started checking for infection again, which also came back negative. She no longer had active pneumonia, but pneumonia left her with a lot of inflammation and scarring in her lungs. They explained that now it would just take time. I can’t tell you how tired I got of hearing that one little word “time”. I kept praying and expecting for God to show up in a big, miraculous way to bring healing to Cora’s lungs. I thought, what an amazing testimony it would be if He just healed her overnight –  in a way that could only be explained by God’s healing power. But the miracle didn’t come that way. It came over time, with a million little miracles along the way. When it looked like there was no progress being made for Cora, I believe with my whole heart that God was keeping her from so many other things that could have happened, but didn’t.

We were nearing the end of December and Cora was still no where near extubation. I was growing weary of watching her fight the vent. I prayed over and over for God to just make it easy for her to breathe and to make her comfortable. She was still having difficult days where she’d be requiring near 80% oxygen while intubated. I wondered why God was allowing this to happen. I wondered when Cora would turn a corner. Again, on my drive home one evening, I was praying for Cora’s lungs after a rough day. As I was praying, the word “Restore” came out of my mouth. It felt as though God had placed it there and when that word came into my mind it felt so fitting it. It was the perfect word to pray for Cora’s lungs. That God would restore what lung function had been lost due to the pneumonia she had a month prior. I wasn’t even praying sentences anymore, I just kept repeating the word restore over and over again.

That evening while I was cleaning off a counter in our kitchen, I opened a drawer that had a small devotional someone had given to me shortly after the girls were born. This wasn’t a book I had looked at often, but I opened it up to a random page in the middle. This was the scripture from the NLT:

“In just a short time He will restore us, so that we may live in his presence.

Oh, that we might know the LORD! Let us press on to know him.

He will respond to us as surely as the arrival of dawn or the coming of rains in early spring.”

Hosea 6:2-3

The NLT version of the Bible is not one that I own, but it is one of the few that use the word restore in Hosea 6:1, and this one NLT scripture just happened to be in a drawer in my kitchen. Do you think God wanted that word to stick with me? Absolutely He did. Even though the road felt long, I KNEW God was restoring Cora’s lungs. And so from that day forward, when the days and weeks and months felt long, I kept repeating, “In just a short time He will restore Cora’s lungs, so that she may live in His presence.” It didn’t feel like a short time, but in comparison to the life that was out in front of her, it was indeed a short time.

A couple more months went by, with details and stories that I plan to share in other writings at some point, but for now – can we skip to the good part? On February 3, 2020 Cora had her breathing tube removed for the last time. The relief shown in Cora’s body language after they pulled that tube was indescribable. She was relaxed, peaceful, and comfortable. Something I hadn’t seen for her in a while. Two years she has been free from that breathing tube and I am so happy for her. Cora had been intubated for almost 4 months and had failed 2 previous extubation attempts. It had been over 100 days and the considerations of a tracheostomy were beginning to float around in conversations with the team.

I can still remember the anticipation I felt the night before she was going to be extubated. I had such hope that this time it would be different. Third time’s a charm, right? So, in honor of the celebratory events that would be taking place, I brought muffins in that day for her care team – extubation muffins, if you will.

You may argue that it was the steroids that kept her extubated, but I’m convinced it was most definitely the muffins ;). I say this all in jest because if you made it this far into my post, you’ve witnessed how evident it was that it was most definitely God.

I realize extubations happen frequently in the NICU. And that this may have felt like an ordinary day of work for many on her care team, but for Cora and our family, it was extraordinary. This day was a turning point in Cora’s journey, and it was the first time we began to see a light at the end of the NICU tunnel. The tunnel still felt long (and it was) … but we could finally see the light! It was a day I will never ever forget.

At the ripe old age of 2, God has given Cora an abundance of amazing testimonies that I pray will one day be building blocks to her own faith. Through many trials and much hardship beauty was born. He gave us beauty for ashes through her story and He has redeemed our pain time and time again.

So, on the 3^rd of February, we’ll be enjoying muffins for breakfast in the Kirsch household, in remembrance of that very special day! If you feel so inclined, please join us in the celebration by enjoying an extubation muffin of your choice <3

Cora Bell,

God is magnified in each and every breath that you breathe!