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Will’s Way Foundation Helps Preemie Families

June 19, 2015

I just learned about this cool program for preemie families from a post on AnnyWorld.

“Will’s Way devotes money and energy to supporting families with babies in the NICU. As Britt put it: “We try to give parents one moment to feel normal.”  Will’s Way accomplishes that by providing “milestone meals” to parents, such as when a baby reaches a goal weight, or gets off oxygen, dinner at a local restaurant to get them out of the hospital, and in one case, threw a wedding dinner for a couple who got married while their baby was still in the NICU.”

Read the full post on AnnyWorld and more about the Will’s Way Foundation.

Taking Care of Preemie Moms

March 27, 2015

Twenty-three years ago today was our last day on the NICU at Evanston Hospital after more than fives months. While I can’t remember much about the last week of my life, I remember almost everything about those long days long ago. I know full well that without the expertise of their excellent caregivers, Isaac and Molly would not be here today. But I knew even then that those caregivers were taking care of Kenn and me (especially me) even as they cared for our children.

Red heart treeI’ve been fortunate enough to stay in touch with many of those caregivers, and even more fortunate to have developed a 23-year friendship with one of our primary care nurses, Jill Miller Wilke. Jill quite literally saved my life when we were on the unit—finding answers for me when she didn’t have them herself, offering support and comfort, crying with me, making me laugh, and fighting tenaciously for my babies. She has gone on to have an extraordinary career beyond her 15 years as a NICU nurse. She has worked on the PICU (pediatric intensive care unit), as an emergency room nurse, a sexual assault nurse, and an organ/tissue donation liaison. Jill is now the lead educator for Bereavement Services, developing and presenting training programs for medical professionals and support personnel.

The other day, she texted me to let me know that she had written a guest post at Preemie Babies 101. While she generously credits me for having inspired the post, I can tell you this is 100% Jill, still taking care of people better than anyone I knew. Preemie moms (really, all moms), should read her post and take her words to heart. Thank you, Jill, for this and all you do.

{Professional Insight}: Loving Yourself
by Jill Miller Wilke, BSN, RN, CPLC

The month of February is full of roses, dinner dates, love letters, champagne, and sugary delights in heart shaped boxes… Not exactly the things that a mom in the NICU—sitting in a rocking chair, watching numbers on a monitor, praying her baby will be OK—is experiencing.

It’s not uncommon for a NICU mom to feel isolated and alone. Most people don’t understand what it’s like to sit, day after day, waiting patiently for a glimpse of little eyes opening, for the opportunity to snuggle, for a chance to be a parent and feel loved. As a NICU nurse for 15 years, I have heard mothers blame themselves, beat themselves up, and diminish their role as a parent, but I’m here to tell you: you are a hero. (read more)

World Prematurity Day and Happy Birthday

November 17, 2014

Ike and Molly 2014

Today, we celebrate World Prematurity Day. Not that prematurity is anything worth celebrating. It’s not, but it is worth celebrating the opportunity to raise awareness about the causes of, consequences of, and potential ways to prevent prematurity. I can’t offer you anything as catchy as the ALS Ice Bucket Challenge, but I can show you two incredibly cute spokespeople for the cause of prematurity awareness in the form of Isaac and Molly, who (coincidentally or not) happen to share their birthday with World Prematurity Day (click the link to like the Facebook Page and learn more).

Today, Ike and Molly turn 23 years old. It’s shocking to me in many ways, but particularly when I realize how deeply etched those NICU (ISCU) days are in my brain. I doubt I’ll ever forget a moment of them, or the hundreds of people who have helped them on their journey. We are are so grateful.

Here’s a little update on how they’re doing. None if this is by way of bragging, as all their accomplishments are their own. I share these triumphs to remind us of how lucky we are. I also remember being on the NICU and being utterly unable to imagine a “normal”, happy, healthy life for those tiny babies. By any definition of the word, Isaac and Molly are true miracles. Most people are never lucky enough to experience one miracle in their lives. I’ve had more than my fair share, and Ike and Molly are two of them.

In the past year, Isaac has moved on from his long-time support system at the transition house associated with his high school. He has a job. He commutes everywhere on his own, rain or shine, by public transportation. He wields his iPhone like the true technological weapon it is, and has an app for almost everything, including how to track his bus. He has held his current job for more than a year and a half, and by all accounts is doing well at it. We are so proud.

This spring, Molly graduated Magna Cum Laude from Mt. Holyoke College, and is now studying at University College London. She is working toward a master’s degree in forensic anthropology and bioarcheology. From what I can tell, she is taking London by storm (also navigating the public transportation system) and has vowed to say “yes” to as many things as possible during this amazing year of opportunities. If you’re interested, you can follow her adventures on her own blog, English Atlas. I guarantee you’ll learn a thing or two. We are so proud.

Not bad for a couple of pound-and-a-half preemies. Thanks to everyone who helped us hope for them. I literally could not have imagined how big their lives would be.

(The picture above was taken two months ago at my birthday celebration.)

Happy birthday! Celebrate with us by telling someone about Prematurity Awareness Day.

Just Breathe

November 12, 2014

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.Overcoming

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.

Just Breathe

Day 50

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.

Day 51

Isaac Very SickMy 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.

Day 57

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.”

Day 75

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.

Happy 22nd Birthday

November 17, 2013

As the world celebrates World Prematurity Day, in our home we celebrate the 22nd birthday of our very own 24-weekers, Isaac and Molly. It’s amazing to think they are 22 years old, when we spent so long thinking in terms of minutes, hours, days and weeks. Born at 23 3/7 weeks gestation, they spend nearly five months in the hospital. Each minute was a miracle—each day an eternity.

We are lucky beyond belief that they survived. We are immeasurably blessed that we have had 22 years with them, and look forward to a lifetime. Happy birthday to my babies. Your birth day was the hardest and happiest day of my life.

Read more about their story starting here.

IM Birthday 11.17.13

World Prematurity Day is Coming Up

October 9, 2013

World Prematurity Day 2013As some of you know, November 17 is Isaac and Molly’s birthday. In a true example of serendipity, November 17 is also World Prematurity Day. Coincidence? Probably, but nothing about their births or their lives has been less than miraculous, so who am I to question this cosmic accident. Perhaps its just a way to bring more attention to the good works done by the people who support and care for preemies and their families.

Each year around this time, people find this blog, which covers the 5+ months that Ike and Molly spent on the NICU (at Evanston Hospital, it was called the ISCU—Infant Special Care Unit). I posted verbatim the daily journals I kept back then. If it’s your first visit here, I suggest you start with the first post. The videos are pretty awesome, too.

I am working on a memoir about raising these amazing people. One essay, called “Just Breathe”, about Isaac’s near fatal illness during his NICU stay, was recently published in the anthology Overcoming.

For those of you counting, Isaac and Molly will turn 22 this November 17. (Another miracle, since their mother just turned 25 in September ;) ) I’ll post a new picture soon.

If you have a preemie story, I’d love to hear about it. Just leave me a message.

Choosing Your Preemie’s Pediatrician

February 5, 2013

When the NICU nurses started bandying about that magic word “home”, I remember asking them which pediatrician we should choose. They gave the standard, professional, appropriate response by offering us a list of pediatrician’s in the area. “Fine,” I said to one of nurses with whom we were particularly close, “but who would you choose if you were me.” I won’t tell you her name even now, because I promised I wouldn’t, but she took me aside and said “Dan Lum” in a whisper.

Daniel TM Lum has been our pediatrician ever since. There are many stories to tell about why he is such an amazing doctor, but for now, I’ll only tell you the first one. The most important one.

Molly was released from the NICU on March 10, 1992, about 10 days after her due date. We were told that most preemies who make it tend to go home on or around their due dates, but we never believed it would happen for us. Just before she came home, Dr. Lum came up to the unit to take a look at her. I discussed his views on immunizations, particularly the live polio vaccine that they wanted to administer as she left the hospital, and the brand-spanking new (at the time) chicken pox vaccine. He gave a brief, user-friendly review of the current research, his opinion and his reasonings behind it, and he said, “Of, course, it’s your decision.”

Exactly a week after her homecoming, Molly was scheduled for her first official visit at Dr. Lum’s office. Isaac was still on the unit. Dr. Lum’s office, at that time, was in the hospital. The home healthcare nurse on duty, Kenn and I travelled with Molly the two miles to the hospital. As soon as we got to the parking lot, Molly decided to stop breathing and turn blue. It was something she would do on a fairly regular basis in the coming years, but this was terrifying.

We were told that once she was released, she could not be seen on the unit as a patient again. They didn’t want outside germs brought onto the unit, which made perfect sense. So, she was a “regular” patient, except of course, she wasn’t. Still well under five pounds, she was way more preemie than infant. Being the rule follower I am (or was), I took off for the emergency room. Our nurse was performing CPR in the car. Kenn, much more practical and far less worried about rules than I, grabbed the car seat and ran up to the Infant Special Care Unit, where Molly had lived for five months and where her brother was still an inpatient.

Kenn’s version of the story is that he was told they couldn’t take care of her on the unit. He said: “Fine, let her die.” Of course they didn’t. Of course they cared for her. You know she lived.

It turns out her heart anomaly (an atrial septal defect [ASD] that kept aggravating her PDA) was more significant than the echocardiogram had indicated and she needed open heart surgery to repair it. Our hope had been to hold off on the surgery until she was at least a toddler, and a lot bigger and stronger. That was not to be.

Evanston Hospital did not perform the kind of surgery that Molly needed, so she went to Children’s Memorial Hospital (now the Lurie’s Children’s Hospital) in Chicago. And here is where we get back to our wonderful pediatrician, Dr. Lum. Molly’s heart surgery itself is a story for another day, but this is the part you need to know. Unbeknownst to us, Dr. Lum came down to Children’s to observe her surgery. We didn’t even know he was there.

Before she was even out of surgery, Dr. Lum was the first person to come out to the waiting room and tell us she was off bypass and doing well. I was stunned to see him and told him then and there that he was not allowed to move or retire until Ike and Molly and all our future children had graduated from high school.

I’m happy to say he followed instructions and is still our pediatrician. When Molly went for her pre-college physical, he offered to stay her doctor during her college career until she had settled somewhere permanently. “Of, course, it’s your decision,” he said. “You have a long, complicated medical history and I’m happy to be a resource for you.” She decided to take him up on his offer. Smart girl.

I won’t tell you that one of the nurses told me that he got a little teary-eyed in the hallway after that pre-college visit. I won’t tell you because the nurse made me promise I wouldn’t. I will tell you that he has been a wonderful doctor for all my children, and that I don’t think I would have survived Ike and Molly’s years of preemiehood and recovery without him.

This post was prompted by another one I read today (see link below) about choosing a physician for your preemie. It has some good advice, but I thought I’d add my two cents:

  • Ask the NICU nurses and doctors; they’ll be reluctant to choose one doctor over another, but they know your preemie best.
  • Choose a pediatrician’s office that has an accessible parking lot. We drove about five miles further for years to go to a secondary office that had better parking. Two babies, two oxygen tanks, a huge stroller, a stuffed diaper bag and one Mama made easy access essential.
  • Trust your gut, and when you find a good pediatrician, hold on for dear life. I recommend a binding contract.

Choosing Your Preemie’s Pediatrician.


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