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.
A toast—to Isaac and Molly on their 21st birthday. It’s been a long, long road, and yet I remember every single second of that day … their birth day. I didn’t officially get to meet Molly until November 18, 1991. Shock tends to put you out of commission for a while. That, and a lot of drugs.
I’ll be posting more over on Two Kinds of People, but I couldn’t miss the opportunity to wish Mike and Ollie a happy 21st here on the memoir blog. Their lives are true miracles, and having them in our lives has brought about many more miraculous events and feelings. I think it’s no coincidence that their birthday—November 17—is Prematurity Awareness Day.
To celebrate, I hope you’ll take a moment to learn a bit more about prematurity, it’s causes and what it takes to help preemies and their families. The March of Dimes is the flag bearer for preemies everywhere. If you are inclined to celebrate Isaac and Molly, or another preemie in your life, consider a donation to their Prematurity Campaign.
This week I was also reminded how many blood transfusions they underwent during their five-month hospital stay and Molly’s subsequent open-heart surgery. A donation of blood in their honor or in honor of another preemie could help save lives.
Happy birthday, Isaac and Molly. You may be adults now, but you’ll always be my babies. Thank you.
Congratulations to baby Kenna and her parents. This tiny baby is going home.
Isaac and Molly were born at 24 weeks 20 years ago. It’s still an amazing feat that they survived. At 1 pound 8.5 ounces and 1 pound 10 ounces respectively, they were actually pretty good size for 24-weekers. We were happy to not set any records for “world’s smallest baby” when every gram counted.
Here is a video about baby Kenna, born January 9, 2012—the fourth smallest baby in the world at just 9 ounces. She’s now a whopping 3 pounds 8 ounces and we wish her an her family only the best on the long road of preemiehood.
We’re very happy not to hold any smallest baby records. Isaac and Molly were plenty small enough and are some of the earliest surviving 24-weekers, born “way back” in 1991.
We read today about baby Melinda Star Guido, another 24-weeker who weighed only 9.5 ounces at birth. Melinda, the third smallest surviving preemie on record, is on her way home and we wish her and her family all the best. I hope her journey is as wonderful and successful as Isaac and Molly’s have been.
I look at the number and I can’t believe it: 20. Isaac and Molly are 20 years old today. How can that possibly be? How can it be two decades since that day, that day I remember in such stark detail that it has become part of my DNA. I can’t remember most of yesterday, but I do remember almost every minute of November 17, 1991.
I couldn’t possibly have imagined today back then, but the years, the images of my babies tumble in my mind like a time lapse. I can’t isolate one image from another because they scroll past so quickly. I hear snippets of their voices — as babies, toddlers, school aged children and, now, adults. I can’t figure out how they are this close to adulthood when I still feel so far away from it.
In an amazing example of serendipity, November 17 is also World Prematurity Awareness Day, this year being celebrated globally for the first time, as Africa, Europe and Australia join the United States in the observance. For me, every day is Prematurity Awareness Day. Literally not a day goes by without some image, some story, some memory, some lasting or fleeting impact of that day making its way into my consciousness.
Prematurity awareness is a part of who I am. Ironically, it’s really not a part of who Isaac and Molly are anymore. When I tell their tale to someone who has just met them, it’s hard for newbies to grasp. Ike and Molly are just so … normal. The pictures help bring it home, but unless you knew them then, you can’t imagine how far they have come. But even though they have put most of the trauma and drama behind them, little reminders creep up: an achy scar, organizational issues, unexplained illnesses that may (but probably aren’t) related to their early births.
I suppose it isn’t kosher to say that we “celebrate” Prematurity Awareness Day; I think its politically correct to say we “observe” it. Not me. I celebrate it. I celebrate Isaac and Molly’s birthday on this day. I celebrate the doctors and nurses and specialists who helped save them, and those who have cared for them since. I celebrate the work of The March of Dimes and the researchers that came before November 17, 1991, work that gave us the techniques and technology that preserved their lives. I celebrate the friends and family and strangers who hoped and prayed for them.
But mostly, I celebrate Isaac and Molly, not for who they were or how they started, but because of who they are and all they have given me. Twenty years of wonder. Twenty years of joy. Twenty years of being the luckiest mom in the world.
I hope you’ll celebrate with me. Take a minute to learn more about prematurity and the millions of preemies born this year who still have a long way to go. I hope you’ll remember the brief lives of those who did not survive, because their lives should be celebrated, too. I hope you will spread the word on this World Prematurity Day. Or take a look back at where Ike and Molly started by going back to the beginning of this blog, started one year ago today.
Happy birthday, Isaac and Molly. I can’t wait to share the next 20 years with you.
Home nursing notes
Ike woke crying at 2:00 a.m. After diaper change, bottle offered and he took 15 ccs and fell asleep. Awake and crying at 4:00 a.m. Too 30 ccs formula and fell asleep. Would not take more even with stimulation; he just became fussy. Woke at 6:30 and to0k 65 ccs formula. Changed at 7:00, but he continued to cry, so offered another bottle and he took 10 additional ccs PO. Awake and alert at 8:00 a.m. Nippled 60 ccs when fed by mom at 10:00. Awake at 11:15, nippled 60 ccs; placed in crib at 11:45. Awake and crying at noon; held and rocked and took additional 25 ccs; continues to be awake and very alert, propped on couch looking at brightly colored toys. Worked on PT/OT exercises; became fussy at 12:40 and nippled 20 ccs. Placed in swing, crying occasionally; asleep at 1:30 in swing, where he slept soundly.
Awake and fussy at 1:00 a.m. Took 20 ccs formula then fell asleep after diaper change. Awake and crying at 3:00 a.m. Took 30 ccs formula and fell asleep. Awake and crying at 4:30 Took 30 ccs formula PO, passing flatus. Awake and crying at 6:30; offered bottle and Molly took 60 ccs formula and burped well. Continued to be fussy, so gave Mylicon. Awake and alert at 8:00 a.m.. Nippled 60 ccs over 30 minutes. Continued to be awake and fussy. Nippled an additional 60 ccs at 10:00 after diaper change, placed in swing asleep. Awake and crying at noon. Nippled 10 ccs, pushing bottle away. Wrapped in blanket and placed in crib on abdomen, patting back until fell asleep. Awake at 1:15. Has upper airway congestion and occasional coughing, especially during feedings. Nippled 115 ccs (!) over 45 minutes. Placed in crib at 2:30 sleeping, but occasionally waking for very brief periods and fussing.