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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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3 Comments leave one →
  1. February 5, 2013 7:59 pm

    I won’t tell you that I got teary eyed reading that. As always neat neat story Susan!

  2. Elysa permalink
    March 30, 2013 12:32 pm

    Thank you so much for sharing the inspirational story of your twins. I have 24.4 week fraternal twin boys who are currently in the ISCU at Evanston Hospital. They would’ve been 36 weeks if I was still pregnant. They have serious lung issues, but other than that thry are doing great. I saw your poster with the names of the nurses that cared for your children. Our son Bradley’s nurse is Val. She said she worked with your twins when they were here. Your story has given me hope for my boys.

    • April 2, 2013 11:00 am

      Glad you found the site, Elysa. Let me know if I can help in any way. Best of luck to you and your boys.

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