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Lily's Story: A Micro-Preemie's First Year

Lily's Health Gets Worse
Prior Segment: Lily's NICU Time

Lily was born prematurely at 25 weeks (6 months) gestation. She was a micro-preemie, weighing just 1 pound 11.5 ounces and was only 13 inches long. Lily spent her first three months in the hospital's Neonatal Intensive Care Unit (NICU). We are happy to have her home now. Today, Lily is a happy, healthy, and very vocal bouncing baby. This is her story.

It was hard on me, not getting to take Lily home, but it was worse for Jed. I just had to have all my clothes and medical supplies brought back to the Ronald McDonald House across the street from the NICU. Jed had to go home to an empty house an hour's drive away.

That night Lily was now up to 6 pounds, 6.6 ounces. We should have known that wasn't a good sign.

Two days after Lily's major episode the doctor decided she should get her recommened shots for a 2 month old. It is now standard practice that the immunization shots are given according to birth age, not adjusted age. One of the shots exaggerated her spells and caused her heart to stop. She required CPR 3 times over the course of 3 days. Again, the thought of losing her crossed my mind. And the thought that it just wasn't fair. She had been doing so well.

Lily developed reflux and for a while (was it only 2 weeks?) the doctors were recommending a fundoplication (surgery). Lily would cough and have the milk hit her vegus nerve, which would tell her brain to tell her heart to stop beating. The brains of extremely premature babies often do not have the auto-restart command figured out yet. So her brain wasn't telling her heart to start beating again. As you can imagine, it was very scary to feed her at times.

Lily had a barium swallow and a tube placed down her esophogus to test the acidity PH. She was diagnosed with moderate reflux. Which put her right on the border between needing the surgery and not needing the surgery. As I was there witnessing the episode I reluctantly was for the surgery, but my husband Jed was against it.

The NICU nurses had notes about each baby's parents which aren't supposed to be seen by the parents. However, one day a nurse left ours on the counter by mistake. Yes, I read it. It summed us up exactly, "Father is a math professor and is very concerned about accuracy of numbers; Mother cries a lot."

We had requested trying medicine to control the reflux. Lily's primary neonatoligist hadn't recommended it because she said it only worked on half the babies who try it, and it would only take one bad episode to lose Lily forever. But she agreed to give it a try as the specialist surgeon who would perform the fundoplication surgery was on vacation for a week. We are fortunate that the medicine did work for Lily.

Just when all the specialist doctors were in agreement to recommend the fundoplication, Lily's primary neonatologist decided against it. The doctor told us flat out that she didn't work so hard to keep this baby alive so we could take her home and let her die. That if we would learn CPR and be prepared to actually use it, then she would recommend releasing Lily from the NICU. That makes her doctor sound harsher than she really was. She just didn't sugar coat anything. And by this time, she knew us well enough that she didn't have to. Since the medicine was working, there wasn't anything which the nurses were doing in the NICU which I couldn't do for Lily at home. It was time to go home.

Lily got to come home in late October. Lily still has reflux as of this writing (01-14-06). She is on medicine, which helps. She is still on the Apnea and Bradycardia monitor.

Next Segment: Lily Comes Home.

Lily's Story Calendar

Prior To Lily - Something Is Wrong - Time in the NICU - Lily's Health Gets Worse - Finally Coming Home -
December 2006: Our First Holidays - January 2007: Starting A New Year - February 2007: Still Under Quarantine -
March 2007: A Baby On A Plane - April 2007: RSV Season Is Finally Over - May 2007: Spring and Song Bird Lily -
June 2007: A Visit with the Neurologist - July 2007: My Baby Turns One !!! -

An Update

You can also see a video of Lily below
or for more videos see under search Micro-Preemie Lily

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on topics such as Preemie Health, Baby Medical Issues, Parenting, Pregnancy, Family, and Shopping for your new baby

Lily of My Heart
is licensed in the State of Wisconsin
PO Box 763
Plover, WI 54467

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