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

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 loving baby. This is her story.

Something Is Wrong

Jed and I met late in life and then took additional 7 years before deciding to begin our family. We weren't expecting all the setbacks which came our way.

I was told by a doctor not to worry about my symptoms a few years ago. That I was just reacting to a strong antibiotic. She was wrong and that diagnosis would delay finding the true problem by another year.

Finally, a different doctor told me I had pallops which would need to be removed by surgery. After the surgery the diagnosis changed to Endometriosis with acute atypia. In laymen terms, precancer of the uterus. We were told the usual treatment was a hysterectomy. As my doctor knew we wanted to have a family, she offered another treatment. High doses of hormones to stop menstrual flow to give my body a chance to fight off the precancer. She said it didn't always work and we needed to stay on top of it and have another surgery in 6 months. Thus I began taking eight times the hormone dosage of a birth control pill. That amount of hormones definitely changes a person's personality. On top of that I was laid off from my job due to overstaffing and had to find a new job in a small community. I was able to find another job, but had to take time off for the second operation two weeks after starting.

The results of the second operation came back as cured and to go ahead and try and conceive naturally, which we managed after 6 months.

I couldn't believe it when we finally got a positive result. Jed was much more laid back about it, saying he was now prepared for this. If only he knew then...

We read a lot of research and things were progressing normally. At two months I started bleeding and left work to go to the hospital. Luckily, it was just hormones. An ultrasound showed a little tadpole like spot with a beating heart. My thoughts were, "Wow. This is real." Further reading revealed "spotting" was regular.

At my three month visit my doctor couldn't hear the heartbeat as would be normal. I am not a thin person and so she wasn't worried. She used a portable ultrasound and found the heartbeat, but also thought she saw a two images. She scheduled another ultrasound on the "big" machine. It should only one, but a very active little kicker. We were so thrilled. The doctor came in all happy and said, "I'm so excited as if this were my own!" She was wonderful.

Next came our genetic testing for Down syndrome and various other things. At work I got the call that the test came back positive for Down Syndrome and to schedule a visit with the Geneticist and the OB Specialist in Marshfield. It was a few days before the Memorial Day weekend so it would be five days before the tests could be scheduled. Jed was also going to be going out of town shortly afterwards to work in Denver for a week. When it rains, it pours.

We took the long drive to Marshfield Hospital which was an hour away. The nurse asked if I wanted to go to the Ladies room when we got there. I asked her how she knew and she told me I wasn't any different than any other pregnant woman after a long car drive. When I got back to the meeting room, Jed and the geneticist were laughing. As my nerves were fried, I wasn't sure how to take that. As usual, Jed starting asking questions as soon as she walked in and hadn't waited for me. But, I was told not to worry. Any woman my age would come back with a positive Down Syndrome test, but that the results of the rest of the tests showed everything was normal. They also showed that I should be considered three years younger than I actually am, which I found quite interesting. We spoke at length with the geneticist, going over every condition anyone in our family had. She put in a request for us to get Tay Sachs testing because of both of us coming from Jewish heritage. It takes two carriers to come together, so it didn't matter that it was a long way back on my side.

We then went in for the ultra sound on the level 3 machine, which was the best in the region. They were looking for a thickness in the neck, which is a sign of a Down Syndrome baby. It came back negative. The baby also sat with its legs crossed the entire time. What happened to my little kicker we nicknamed Froggy? Now all the sudden modesty was everywhere. The specialist, Dr. Meier, wanted an amniocentesis. We said no because the odds of it finding Down Syndrome now were something like 365 to 1 and the risk of a miscarriage due to the procedure was 200 to 1. It wasn't worth the risk. We came back home relieved.

Our 20 year old cat wasn't doing so well, but Jed had to go on his business trip anyway. Three days into it I was calling him saying Ebony was not going to make it much longer. He was already on his way to the airport. His employers were sending him home to be with me during a "family crisis." They were so nice about it. Jed arrived home on Monday.

By Wednesday we decided it wasn't fair to Ebony to keep her on medical equipment and die in a cage. We assisted the doctor in removing her IV's. During the procedure, I was nicked by Ebony. We washed it out straight away, but missed a spot on the back of my hand. We took Ebony home to pass away in loving arms.

The next night I was in the emergency room with a swollen hand. I felt silly going in, but was told it was absolutely appropriate. The doctor first said penicillin was the first choose of treatment. I told him I was allergic to Penicillin. Next came a drug which we couldn't use because I was pregnant. The next drug could be used because I wasn't in the first or third trimester. The emergency room doctor said he was going to write a paper on this experience because he had to do so much research to find out how to treat me. Eventually, I was put on an antibiotic IV for an hour and given pills to take for a week.

About a month later Jed and I were watching television in the evening and I felt like a little foot was pressing down. The next day was our 6 month exam, so we just thought we would tell the doctor then.

Next Segment: Lily's Health Gets Worse.

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

Read Information Articles
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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