Last night I crawled into bed with Jethro and I told him the story of his birthday.
It’s never an easy story for me to tell, as his birth began one of the hardest seasons I have ever faced.
I told him that Mr. B. and I woke up super early for my scheduled C-section. We got to the hospital and they checked my belly and its precious contents. Then they rolled me into the operating room where we waited with hearts bursting to meet our little Jet Jet.
But when they brought Jet into the world, the upbeat spirit in the OR turned instantly serious and quiet. There were no comforting newborn cries or joyous exclamations.
The doctor worked quickly and with laser focus to try to help our baby breathe. Then suddenly Jethro was thrust into my face for a brief encounter, only to be swept away to the NICU while my husband overheard the doctor say on his way out, “It could go either way…”
But even in this unexpected turn of events, as they finished my surgery, I felt an overwhelming sense of the Lord’s presence and an assurance that it would be okay.
I wish I could say that I walked faithfully under the umbrella of that good word over the next 97 days of our time in the NICU, but I did not. The doctors believed Jet’s rapid breathing was because he had aspirated at birth, but a few X-Rays later ruled this out. A heart specialist paid Jet a visit to see if he had any issues there, but, again, that was ruled out. They continued him on oxygen and an NG tube because he was too weak from breathing to eat on his own. He finished a round of antibiotics and a doctor called us in. I hoped that he would give us good news and tell us we could go home. But he showed us a different set of X-Rays and pointed out the possibility that one of Jethro’s diaphragms had developed too high and was therefore bumping into his lungs and making it hard for him to breathe normally. The doctor said there was nothing more they could do with their limited facilities. A hospital further south was our next step.
I broke down in Mr. B’s arms when they transferred Jethro in an ambulance to another, better equipped hospital and I wasn’t allowed to ride with him. He could have died on the way and it was all I could do to hold on to hope. I remember we went to Panera to pass the time, but I wasn’t hungry and to this day I pray for every ambulance I see on the road and for the mama of whoever is inside.
The new hospital was big and everyone told us we wouldn’t be there too long. As we waited in the waiting room for Jet’s bed to be ready, I met a young woman who smiled and welcomed me. She shared that she had given birth to twins at 24 weeks and one passed before she even got to meet him. The other was a little over 1 pound and in critical condition. She had already been in the hospital for over a month. I grieved for this precious woman who appeared so calm and in control in spite of so much loss, and then I selfishly grieved for myself, too, because I was not calm. Inside I was struggling with a deep disappointment and growing fear for my own baby’s future.
We got to Jet’s bed and I tried to nurse him, but he couldn’t latch. He had no strength. I decided then that trying to breastfeed was too much for my heart to take, so I resigned to pumping around the clock, finding comfort in this one small thing I could offer in a world where confident, knowledgable nurses seemed to handle my baby better than me.
Days passed and everyone said we would be able to go home soon, but then suddenly they moved us to a private room and my hubby grabbed me by the shoulders and said as I cried, “Baby, this is not a sprint. It’s a marathon.”
We saw so many doctors and nurses – some good, some not so good. Some who said too much, some who didn’t say enough. Some who comforted me and some who stirred up my fears. Some who wanted to try radical therapies and medications because “it could be XYZ,” and some who just wanted to wait.
Like the day Mr. B. and I arrived at the hospital to visit our boy and a doctor told us they wanted to put Jet on a CPAP machine. They assured us it was just like the nasal cannula, no big deal. When I walked in to see Jethro later, however, I was so shaken by the sight of the intrusive breathing equipment that I had to leave the room. Mr. B. caught me as I stumbled out, and by God’s grace, a team of elders from our church happened to be arriving at the same time to pray for us. I will never forget the timing of their visit… as I weakly walked down the hallway depressed and anxious, a group of 15 or so strong, good, faithful men turned the corner and headed toward us. It was like an army of angels and their presence and prayers helped me see past the CPAP.
Early in our time at the hospital, I had a vision that we would be able to leave the hospital with our baby completely healed. I dreamed of them wheeling us out and the hospital corridors would be lined with our church friends. The people who were faithfully praying day and night for a miracle. I imagined us celebrating God’s mighty work in the life of our son who would be leaving the hospital with a clean bill of health.
But days turned to weeks.
I had to sleep at home and keep things somewhat normal for Noah, who was 2 at the time. But I usually ended up crying when nothing seemed normal and Noah always wanted to read the little board book I’m a Big Brother and I sadly wondered if he would ever get to actually be one.
The middle of the night pumping sessions were my times of desperate crying out to the Lord. I sat hooked up to my Medela with a Bible open in my lap, weeping as the Psalmist’s laments resonated in my soul like never before.
“But as for me, I am poor and needy; may the Lord think of me. You are my help and my deliverer; you are my God, do not delay.” Psalm 40:17
Back at the hospital the infectious disease doctor wanted to treat Jet with 6 weeks of a chemo-like drug. Around the same time a geneticist wanted to test Jet for a genetic disease called Spinal Muscular Atrophy. That test would also take 6 weeks. My stomach churned at the thought of spending another 6 weeks in the NICU. We were so tired.
I promised myself I wouldn’t look the geneticist’s concerns up on Google, but in a moment of weakness at home, I tapped out my questions into the search engine and was completely horrified by the information I found. If diagnosed, Jet would not live to his second birthday, at best.
I called my pastor’s wife and we wept. She told me that no matter what, we would get through it together.
One day I was in the hospital and the geneticist came in. His presence was like a dark cloud. He brought in another doctor who looked over Jet’s X-Rays and labs. I wanted desperately to hold fast to the whispered assurance from the Lord that day Jet was born, but I crumpled when the doctor patted our shoulders and said, “You might as well prepare yourselves to take him home, make him comfortable, and get ready to say goodbye.”
My world spinning, I ran to the bathroom. I thought I was going to lose my lunch. Collapsing on the floor, I cried out to Jesus. How could I keep my eyes upward when everything outward was pointing to my biggest nightmare? My phone dinged as a text came in. I opened it and saw a message from a dear friend. It read, “Julie, I feel the Lord wants me to tell you something. He wants me to tell you this – Your son will not die, he will live. He will not die.”
Manna in the desert.
With God’s help, we made it through a few more weeks. Jethro finished his 6-week chemo treatment, but the genetic test results got pushed back a few more weeks. At the same time, Jethro was not eating well. Feedings were slow and he wasn’t taking in the amount they thought he needed to grow. Many of his feedings relied on the NG tube and I felt like I lived in 3-hour roller coaster pockets waiting to hear whether or not my boy had eaten a sufficient amount.
After 3 long months, the doctors were finally ready to let us go and wait for the genetic reports at home, but on one condition. Jethro would need a feeding tube. We were tired of fighting. We wanted to be home as a family. All of my fears and pure-hearted desires to see a full healing were brought to a humble surrender. A cry heavenward for, “Not my will, but Thy will be done.”
So we had the surgery. I had a billion feelings. Sadness for all that we had lost, anxiety for what still laid ahead, and disappointment that things weren’t turning out the way we had all hoped and prayed. But in that broken place I found Jesus like never before. No more would my tidy, predictable faith be acceptable. The Lord wanted all of me – desperate, honest, broken, and trusting.
Our release from the hospital happened quickly after Jet’s feeding tube was in place. Before we knew it, they were giving us some final instructions, handing over all my frozen bottles of pumped milk, and we said goodbye to a place that held so many terrible memories, and yet felt so… safe.
A nurse walked us out and that was that. My dream of a grand, celebratory exit shattered on the pavement like so many other hopeful prayers I had prayed over the last 3 months. But at this point, I was becoming familiar with the drill. The Lord was prying my clenched fists into open hands of trust.
We drove home – all 4 of us – finally a family. I had all the emotions as we traveled – was my baby uncomfortable? Were the car seat straps making his feeding tube dig into his stomach? Did I even remember how to use the feeding tube? Would it get infected? How in the world was I going to entertain Noah while I took care of Jet?
Distracted and trying to cast my cares on the Lord, Mr. B. turned the corner on our little street and his eyes danced. As we got closer to our house, I saw dozens and dozens of cars lining the street. Faces of beloved church friends passed my passenger side window as we pulled into the driveway. Chalk drawings exclaiming loving affirmations led up to our front door, dozens of balloons, and homemade signs accompanied the loud cheers of all the people who had loved us through every disappointment, every desire unfulfilled, every fear, every doubt, every sorrow, and every crazy turn in this journey of Jethro’s life all right there on our front lawn ready to be with us come what may.
It was not what I expected, but in a way, it was so much better. It was real. Because often we don’t get the happily ever after we think is right and sometimes the only thing to do is stand on the unfailing promises of God and the precious love and support of His people. That day was a beautiful mess as we unloaded our baby who still faced so many unknowns – but we had a great hope that we would not be alone.
The next year was not easy by any means, but we saw a slow and gradual healing. He didn’t have SMA, but rather mitochondrial myopathy – something that, to this day, I refuse to accept because he has never once presented as a typical case. His feeding tube came out months before anyone ever imagined it possible. He gained strength each week, eventually learning to roll over, crawl, and walk. Never on time, but slow and steady, as we committed his future each day to the hands of Jesus.
His low tone continues to be an issue and he is the pickiest eater alive, but today Jethro is happy and healthy. He hides old bananas at the bottom of our laundry hampers, has some of the sweetest dance moves, can get naked in 2 seconds or less, is always humming a tune, greets us every morning as if we have been apart for weeks, is still obsessed with DVDs, likes to never wear shoes, would eat cheese sticks as his only form of sustenance if he could, and has a sense of humor that keeps me laughing my head off each day.
Like that time last night when I was telling him about the day he was born and I told him that one of the first things Mr. B. and I did for him after he was born was sing worship music over his little incubator. Mr. B. had pulled up a chair, brought out his guitar and we sang reminders of our faithful Lord over the little one He had entrusted to us.
After telling Jethro this, he looked up at me with bright eyes and exclaimed, “Oh! I remember that!”
I laughed out loud and said with surprise, “You did?”
He nodded enthusiastically.
“What did we sing to you?” I asked.
And he smiled and said, “The National Anthem.”
Happy 5th Birthday, sweet Jet.
Your life might have ushered in the hardest season I have ever faced, but your life also gave me the best season I have ever faced.
It was the best because it gave us YOU. But it was also the best because we got to witness what the Lord did in us and through us and in spite of us, and through the precious people of God. Jet, your life is a TESTIMONY of God’s faithfulness.
We can stand 5 years later not mourning our losses, but celebrating our gains. We know Him more because of you, Jet.
And that is a gift far greater than anything I could have ever imagined.
Just as the Lord whispered to me on your birthday 5 years ago – everything is okay and will continue to be okay because of Jesus.
We love you, Jethro! I would do it again! <3
“Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ and be found in him…” Philippians 3:8-9
To God be the Glory!!!
You, by the grace of God, made it count!! May He continue to bless you and others!!
Tears in my eyes! Thank you for sharing the story again 🙂 Love you and miss you all!
Oh, Julie! I have tears streaming down my face. Such a painful, hard season. But God is good. Last night I shared prayer cards that I’ve used on and off for, apparently, 5 years?!?, with my small group of college girls. I have a card for people who are suffering, and “baby Jet” was on my card, with a little check mark by his name that clearly represents so many answered prayers. I love you! So thankful for God’s faithfulness and grace!!
Beautiful! Had me in tears all the way through. So grateful to God for this story!
Thank you for this lovely reminder of God’s faithfulness! Just went though my last few tissues!!! 😉 He is SO handsome!!! May the Lord continue to work in your lives!
Wow, Woman of God!!! There are NO words to describe…so inspiring. Needed to hear this. Jet has an awesome Calling on his life. My birthday too:)
Has it really been 5 years already?? I rarely comment, but I remember praying for you everyday as your family endured this trial. I remember thinking how amazing you were. Crazy at it may seem, your pumping journey ended up being a blessing for me just last year. God has a way of using everything for our good and His Glory. So blessed by you and your glitterific attitude. Thanks for sharing so much of your life with a perfect stranger. 🙂
I still think of you and your beautiful family. It was a pleasure to bring your sweet baby into the world. Love your labor nurse.
This was so amazing and beautiful to read! I had tears streaming down my face most of the time. Thank you for sharing! 😊❤️
Thank you for this sweet re-telling of our story, my love. I would do it again, too. And not just because his story had a happy ending but because, as you alluded, we were gifted resurrection sight on our journey through a cold, dark place.
Ryan (AKA “Happy Hubby”)
Hi! I’ve been reading you for years! Love your posts! They’ve taken on new meaning for me recently as my second son, born in 2016, was in NICU for a short time. Thank you for sharing your experiences and the things God showed you in the midst of them. Reading your articles has been encouraging and healing for me.
Happy Home Fairy
Lisa! You just made my day! Thank you SO much for leaving this precious comment. And thank you for sticking with me all of these years. I am SO encouraged by that! Have a wonderful day! <3
This post was amazing GLORy to God for everything I cried reading this God bless you!!!
Hi Julie. This is like reading about my own life right here! Truly amazing. God is awesome. Your family is beautiful and blessed:) I would really love to email you and ask you a few questions about Jet’s progress over the years e.g milestones, etc, as my 2 month old, according to the doctors, also has hypotonia. Many thanks.
This is an absolutely encouraging story. The part that made me tear up was when you mentioned what the doctor said to you about saying goodbye to your son. This happened to me. I have a baby named Grayson who was born at 25 weeks. He weighed 1 pound 12 ounces. One night around 9:30 a nurse practitioner sat by my side and said to me, “You do understand that he will never hear you, see you or recognize you. He will never walk or crawl.” I just cried my eyes out….How dare you say this to me. But the next day I told Grayson’s dad that no matter what they (doctors, nurses, practitioners) say we will smile and say Grayson is strong and he can handle it. Grayson is now 4 months old and weighs 11 pounds. His eyesight is excellent and he passed his hearing test. He’s still in the hospital but not at the one that gave us little to no hope. Thank you for your story and strength.
God gave me a message a long time ago. He told my you don’t have to take man’s word for anything. This is an example of just that
I read your account with my hand at my throat. We too spent much time in the NICU with our son 5 1/2 years ago –88 days. No one knew, nor does anyone yet know, what made our boy so sick, but we know how he recovered: the grace of God.
I love the bananas comment. Mine, too, has a particular sense of humor and seems to bring love and joy to all he meets. What special little people we have. Thank you for sharing your story.
Tears. Wow. God is faithful. The constant surrender is so hard sometimes. Love the illustration of God opening your clenched fists. This testimony is powerful.
Your story brought tears to my eyes. My best friend is in the NICU with her newest little as we speak, and I am at a loss as to how to help her and be there for her. I am praying desperately for her and her sweet baby girl, and I’m encouraged by the growth you experienced in those hard times and how your faith grew. Your story brought joy to my heart too, as you saw healing and the miraculous power of the Lord move in your son and in your family, as only He can do. Thank you for your openness and honesty, and thank you for sharing the Lord’s victory in your life.