November is a big month around here. It is Prematurity Awareness Month® (read more about it here), and mid month, November 17, is Ike and Molly’s birthday and World Prematurity Day (that’s not a coincidence, it couldn’t possibly be). This year, I’ve decided to share a piece I wrote about when Isaac was terribly sick during his NICU stay.
Originally published in the anthology Overcoming, “Just Breathe” includes parts of the journal entries I wrote at the time (which are published on this blog), and some reflection on how Ike’s catastrophic illness affected me and all the people who have known and loved him (and even some who don’t know him). I hope it will be part of a memoir I’m writing about our prematurity experience. For all the journal entries, scroll back to the beginning of the blog to follow Ike and Molly’s journey on the NICU (or ISCU, as it was known to us). As always, this is dedicated to the hundreds of people who helped us along the way, and to preemie families everywhere.
Good things, Ike. You gained more weight last night. Dr. H. was really impressed by how big you have gotten. He thinks we should get you a flannel shirt, like Daddy’s. You still need a lot of oxygen, but overall you are doing well. I thought as you started to get better, things would be easier for me, but I’m more anxious than ever. Waiting for you is so hard. But you’re worth it, big guy. Just 28 grams until you reach your birth weight.
Fifty days after my twins were born, my son Isaac had still not regained his birth weight of 685 grams. To put that in perspective, 454 grams equals one pound. Born 16 weeks early, he was too small to have to fight as hard as he did, but by day 50, we had settled into a new normal, where small was big, hospital was home, and hope seemed to be working. Now it was just a matter growing them big enough to bring home.
That’s what we thought, but just two hours after my promising visit on day 50, the phone rang. When you have a sick baby in the hospital, the ring of a telephone is an alarm bell heralding disaster, but I had let down my guard.
I don’t remember the words of that phone call, only the urgency. I do remember trying to find care for my stepchildren, who were visiting. I remember feeling terrible that our plans for my stepdaughter’s already-belated birthday celebration were being scuttled. I remember focusing on those practicalities because I didn’t want to focus on the scary things going on at the hospital. And I remember realizing, maybe for the first time, that you can’t quit the job of being a parent.
My dearest Isaac, my sweet boy. What you have been through in the last 22 hours! Yesterday morning you were doing well. Two hours later, you were back on the ventilator. Daddy and I spent the night to be near you. You’re on all kinds of medicine, with so many tubes and lines sticking out of your beautiful little body. I love you so much, Isaac. I hope you can sense that. I’d do anything to help you through this, but it is something you have to do yourself. Be strong. Life is worth it. There’s a place in my heart—Isaac’s place—that no one else can fill. I promise life is better than what you have known so far. Just be your feisty self and keep fighting. Stick your tongue out at the world and prove the odds wrong. I love you. I love you.
Isaac blew up like a water balloon, the edema nearly doubling his weight. Doctors, nurses and respiratory therapists crowded around his bed. His primary care nurse cried during the six hours it took her to write up the notes from her shift, and we stood by, shocked, helpless, and barely able to breathe.
Bad things always seem to happen on weekends. That terrible Saturday night, the doctor on call was a floater—she didn’t know us or our babies. At about 10:30, she sat down with us and said the words we had heard many times before: “The next 12 hours are critical.” She listed everything that was going wrong with our boy. She looked compassionate, but somehow resigned. She tried to hold my hand, but I wouldn’t let her.
Kenn kept interrupting, saying things like “But he’s going to be OK, right?” and “Yeah, but he’s overcome stuff like this before.” The doctor repeated: “He’s critical.” I heard what she was saying. I took Kenn’s face in my hands and made him look at me. “She’s telling us that he’s probably going to die tonight.” He half shook his head, looked back at the doctor, who looked down at her hands, and then he completely deflated. “The next 12 hours are critical.”
Every night after the babies were born, before we fell asleep, I asked Kenn if they were going to be okay. He always said: “They’re going to be fine. They’re going to grow up and have happy, healthy lives.” I never really believed him, but it helped to hear the words. That night, as we stood over Isaac, he stared back at us through swollen eyelids, seeming to see right into my doubting heart. Kenn squeezed my hand and said: “See, he’s going to be fine.”
Isaac didn’t die that night, but he continued to get sicker and sicker. His lungs filled with thick mucus and he had regular episodes where his heart stopped and he couldn’t breathe. Dr. Abby Adams, the neonatologist who had taken care of the babies the night they were born, was also on call on day 56.
Oh, boy, did you have a rough time last night, Ike. Dr. Adams rushed to the hospital (she even got stopped by a policeman for speeding) and I called Daddy and we all worried over you until about 3:00 in the morning. Dr. Adams decided to give you some medicine that they give to kids with Cystic Fibrosis. She said it had less than a 50 percent chance of working, but it seemed to help.
The medication Dr. Adams decided to try that night had only been tried on three other preemies and had worked on only one. Isaac was patient number four. I remember her talking to him as she flew around the room. “I’m trying, Ike, I’m trying. We’ll figure this out.” That’s when I broke down completely.
She knelt in front of me and took my hands. “He’s still here,” she said to me. “He’s on paralytic medication, but his eyes are following my every move. He’s still here, and as long as he keeps fighting, I’ll keep fighting too.”
It sounds melodramatic, I know, and it was. But she was right. You could feel Isaac watching you, and his strength never seemed to waiver. If he wasn’t giving up, and she wasn’t giving up, what choice did I have except to fight right along with them?
The hours and days dragged on, and Ike seemed stuck in an endless cycle. They would suction him to clear his lungs, but more mucus would build up. His tiny veins were collapsing from all the IVs and they had to shave his head for more access. Still swollen, his toes looked like overripe peas ready to pop off his feet.
It sounds funny, but our greatest prayers at that time were for him to pee, because that meant his kidneys were still working. We’d watch and wait and beg him to pee. “Come on, Ike, pee for Mama. You can do it. Just a few drops, that’s all we need.” I had never understood before how elemental life really is: breathing, peeing, sleeping. Those are the things that matter. Later, eating, drinking, and pooping become important too. The rest is merely diversion.
By day 73, Isaac was overcoming the infection. His swelling abated, and he was starting to gain real weight again, not just fluid weight. I couldn’t believe someone so small could be so resilient. Strangers stopped by to congratulate him—first, nurses and doctors from other parts of the NICU would give him the thumbs up, but soon news of his heroic recovery spread and we got visitors from all over the hospital. One custodian from the cardiac unit stopped by: “You the man, Ike. One tough little dude. Way to go, buddy.”
You couldn’t wait, could you, Isaac? You went ahead and pulled out your breathing tube last night. And you are doing great! And guess what? I got to hold you today. It was wonderful. You are so tiny and warm and beautiful. I love to look at your little mouth. You have such an expressive face. You raise your eyebrows, or scrunch your forehead, or open your eyes really wide and look right into me.
They pulled the last vestige of Ike’s devastating illness, a special catheter, on day 86. The doctors had sworn to me that they weren’t going to remove it until he left for college—just in case—but Isaac had other ideas. It was almost seven more weeks before he finally came home with us, on day 132, weighing 3 pounds, 14 ounces, huge in our eyes.
While his illness had been conquered by the world’s smallest superhero, Ike would continue to fight to overcome the ramifications of his extreme prematurity for many years to come. He has approached each new therapy with joy, and confounded every naysayer who has ever doubted him. Some days, I’m completely calm, knowing that he will figure things out in his own Isaac time, in his own Isaac way. Other days, I panic and start to hyperventilate, sick with worry about him and his future. It’s on those days that I remember the first and most important lesson he taught me: just breathe.