Worldwide, 13 million babies are born preterm each year and one million of those die each year as a result of their early birth. Today (November 17th, 2011) is the first-ever World Prematurity Day, part of the March of Dime’s Prematurity Awareness Month, to honor these premature infants and raise awareness about the importance of striving to give every baby a healthy start in life.

So today, I not only praise the March of Dimes for helping my preemie twins, Macy and Mallory, survive almost eighteen years ago, but I also praise my preemie twins themselves for the fine young ladies they have turned out to be. Read our story.

Macy recently attended the FCCLA Cluster Meeting in Minneapolis and was so excited to tell me that one of the presentations at the convention was the March of Dimes talking about World Prematurity Day. I am hoping she decides to do a Star Project on being a preemie and share her miraculous story.

We had speech therapists, physical therapists and occupational therapists start coming out to our house before the twins were even one year old. And it didn’t cost us a dime. Once the girls turned three years of age, the school provided transportation to take the girls to an Education Service Unit school setting.

I also enrolled the girls in a regular preschool on opposite days, and let me tell you, I loved having a couple hours break from all the hustle bustle! And besides the twins attending two different preschools, we also worked on preschool worksheets at home as I was bound and determined to get my girls up to par.

The twins are now juniors in high school and still receive special assistance in school, but they are truly my miracle babies!

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A million questions ran through my mind. Did the pharmacist that dispensed Moctanin warn the doctor and staff of Unsafe Drugs side effects? Why did they think an adult medicine would work on a baby? And why didn’t they decrease the dose? And why wasn’t it administered properly? And why was my least favorite resident (he wore a huge turban and spoke very poor English) assigned to Macy’s care?

Moctanin was eventually taken off the market, and Macy lived to tell her story, bless her heart!

Mallory has been sick for over a month now with classic medical symptoms: headache, stomachache, sore throat. She was originally diagnosed with a sinus infection, but antibiotics didn’t help at all. She also said she felt like she was “blacking out” – my interpretation of “blacking out” was getting up really fast and getting that woozy feeling, which made sense since she was weak from being sick.

All medical tests had came back normal; she was negative for strep throat, mono, influenza, CSV, even carbon monoxide poisoning (that freaked me out, so I bought all kinds of testers for the house). She looked extremely pale, but all bloodwork was normal, so she wasn’t anemic. They finally did an MRI which showed “inflammation on the brain” which they wrote off as a nasty virus.

When Tatym, her younger sister, started to have the same headache/stomachache/sore throat symptoms, even both girls having a tender spleen and left ear pain, we figured it really was a contagious virus, and it would just have to run its course.

Tatym only missed a couple days of school, but Mallory had already missed three plus weeks of school. She actually seemed somewhat better last weekend, so when she was bawling that she didn’t want to go to school on Monday, Macy (her twin sister) and I chided her that she couldn’t miss any more days of school! Then during breakfast, her whole body “twitched” and Macy and I gave each other that “what the hell just happened” look.

Here, Mallory was calling those twitching episodes “black outs”. I knew the doctor’s office wouldn’t be open until eight, so I hopped into the shower. In the meantime, Mallory had another episode, causing her to drop her “fake baby” (she is taking a Child Development class and gave her baby a head violation in the process). We dropped the baby off at “daycare” aka school and headed to the doctor’s office.

Mallory had a few more twitches on the way there, and I jokingly asked if I needed to hold her hand to walk to the office. And within a second, Mallory was no longer beside me, but on the cement having full-blown convulsions in a pool of blood. I panicked. I couldn’t stop her or hold her still. No one was around to yell for help. I ran to the doctor’s office to send help.

Luckily a local businessman came to our rescue and used his coat to pad her head from getting any more damage. My daughter was having a massive seizure and there was nothing I could do to help her. But the scariest part was when she stopped convulsing and went limp. She was gray and lifeless, and I seriously thought she was dead.

–that feeling makes me cry every time I think about it, so I need to take a break in continuing writing–

When rescue arrived, I was happy that Mallory finally opened her eyes, but worried when she was in a fog and not responsive to me. My mom drove me to follow the ambulance to the emergency room. More bloodwork and a CT scan were all normal. So what was wrong with her?!

Mallory must have originally landed on the left side of her forehead as she has a huge bump there. The fall broke her prescription eyeglasses cutting her right eye requiring stitches to close the huge gap.

After the neurologist reviewed Mallory’s history and EEG, he diagnosed her with juvenile myoclonic epilepsy (JME), and that combined with the virus that she has been fighting the last few weeks just exacerbated each other. She had all the classic symptoms of JME: febrile seizures as a infant, staring into space as a toddler, muscle spasms the last couple of years (which we were writing off as charlie horses). JME full blown seizures typically begin at ages 13-15. Since Mallory was a preemie and still is developmentally delayed, that makes sense that hers waited until she was 17.

Indications of a full blown seizure coming on are extreme mood swing (she was bawling uncontrollably) and “twitches” which are more likely to occur in the morning. Bingo. The neurologist put her on Keppra XR, sent her home, and said to come back in a month.

After doing research (aka google) and talking with our pastor (whose wife has epilepsy) and some good friends who know A LOT about epilepsy, I made an appointment for Mallory to see Dr. Madhavan who specializes in epilepsy.

A lot of Mallory’s history is starting to make sense to me now. For instance JME affects your short term memory and ability to learn. I had always wondered why Macy excelled above Mallory at everything when Macy was the sicker baby of the two by far. I now have hope that once Mallory is properly treated, we will see a significant improvement!

Thanks to everyone for all the prayers and concerns – your friendships are appreciated more than you know!

When my girls finally got to leave the Neonatal Intensive Care Unit, the nurses gave them cute little shirts saying “NICU Graduate” with the hospital name and year on them. They have since stopped giving them away due to budget restraints which I totally understand – I’m all for keeping healthcare costs down. But I love the whole “NICU Graduate” concept, so I was happy to see that CafePress offers dozens of designs to order your own NICU Graduate Merchandise where you can get such items as a bib, custom tshirt, ornament, onesie and more.

CafePress also offers a huge selection of personalized gifts and unique t-shirts (including sports tshirts featured on the blog “Death by T-Shirt“), clothing, mugs, art & posters. They have millions of designs from shopkeepers around the world that range from funny to cool to promotional.

My preemie twin daughter, Macy has had several intestinal problems over the years.  They started when she was infant suffering Necrotizing Enterocolitis where she had seventeen inches of her large and small intestines removed (which was a huge amount on a three pound baby!) and had to don a temporary colostomy.

When Macy was finally able to come home from the hospital, she suffered severe diarrhea.  All of our baby outfits were stained – the backsides from Macy and the front sides from her twin sister, Mallory who had an esophogeal reflux and projectile vomited after almost every feeding.

I tried every brand of disposable diapers and even tried cloth diapers as poor Macy’s tiny little butt would bleed, irritated from all the action.  I also tried every kind of diaper rash cream that I could find on the store shelves, including Boudreaux’s Butt Paste (I love saying that). We eventually had to get a prescription strength ointment that was only available at a pharmacy 150 miles away from us.  Hard to believe we drove three hours to cure a diaper rash back then!

I do believe Boudreaux’s Butt Paste is the best option for “normal” baby diaper rashes though.  In fact, I am giving a tube of it to my sister for her virtual baby shower with a pack of diapers and baby wipes. Request a free sample of Boudreaux’s Butt Paste for your baby!

Mallory & Macy on their 16th birthday (1/27/2010) standing under the counted cross-stitch samplers I started while I was on pregnancy bedrest at 21 weeks.

As it snows outside today, I remember the awful snow storm we received sixteen years ago, as that was the day my million-dollar miracle babies were born.  The weather was too bad for a helicopter to fly me to Omaha, so I was put in Trendelenburg position (feet above my head to relieve pressure on the cervix) and given drugs to try to stop labor and more drugs to speed up the development of the twins’ lungs.  I remember the doctor saying, “Your tummy is a way better incubator than any hospital.”

But the drugs didn’t work in time. Six doctors and fifteen nurses were called in to help out at our small local hospital for my emergency C-Section.

At 10:52 pm and 10:53 pm, I gave birth to the tiniest babies I’d ever seen, born over 13 weeks before they were supposed to come into this world…

Twin A: Mallory Joan, 2 lb 6 oz
Twin B: Macy Annette, 2 lb 9 oz

Notice the size of the nurse’s fingers compared to the size of Macy’s arms and legs (Twin B)! My wedding ring could fit around them. And Mallory was even smaller. I tell them they could have fit in a Velveeta cheese box.

The doctors didn’t think the girls would live through the night, and our pastor came down to the hospital to baptize the girls. My husband named them while I was still in the recovery room, and I remember practically sitting up in bed when I heard that they let him name them (let’s just say I would have named them differently).  I think the grandmas may have helped as they have their grandmother’s middle names.

I wasn’t even put in the maternity ward after surgery, as I’m presuming they thought it would be too devastating for me. I got to see the babies for one brief minute before they were flown to St. Joseph Hospital in Omaha. A helicopter would have been too rough of a ride for them, so they were transported in a medical airplane.  I remember receiving a bill from the City of Norfolk for having to do snow removal to clear the airport’s runway for the plane.

It was not an easy journey the first year (as you can read under Macy & Mallory’s NICU Story), and they still like to try my strength and patience at times. I’m surprised I don’t have any gray hairs yet!

Happy Birthday Girls! I love you! ~Mom

Since Macy’s stomach has been hurting on her main incision line across her abdomen and not stretching as she grows, I made an appointment with the surgeon. The other indented scars seen above are from her colostomy and bile drainage tubes.

We went to see Dr. Stephen Raynor at Children’s Hospital in Omaha last week, the same surgeon that performed all of Macy’s surgeries as an infant. He remembered her well, saying she was responsible for all of his gray hair. It was nice to catch up with him, as we haven’t seen him in over a decade.

We scheduled exploratory surgery for October 5th, as the doctor thinks she most likely needs some hernias repaired. He will also be able to do some scar revision and remove some adhesions. Macy is sometimes upset that she will never have a bikini-perfect tummy, but I told her she should be proud of her battle wounds, for without them, she would not be alive today.

We could have scheduled the surgery sooner, but Macy is also a certifiable socialite and didn’t want to ruin any already made plans.  She was fussing a lot today of stomach pain, so much that I offered to call the hospital and see if I could move up her surgery. But I just got the eye-rolling look that she is not going to miss the big Homecoming dance. Everyone has priorities.

I had an appointment with Dr. Jim Albin today – the same obstetrition / gynecologist that delivered my preemie twins over 15 years ago.  I gave the nurse this web address to read Macy and Mallory’s story, and realized I have no current pics of my million dollar miracle babies on here. And none in my purse either. What kind of doting mother am I? So, here is a picture taken at the twins’ confirmation on Palm Sunday this year. And you get to see my shining face as well. 

The twins looked identical at birth, except for Macy had bigger feet. They were in separate sacs, but shared a placenta, so doctors said they could either be identical or fraternal.  Seeing them now, they are definitely fraternal!  Both girls have always been ”short and skinny” for their age, but Mallory (shown right) is the taller and thinner one of the two. And their demeanors are complete opposites!

So I haven’t been feeling well lately and have been experiencing abdominal pelvic pain. I’m sure I’ve met my insurance deductible* just on running various tests (my pesky gallbladder wasn’t the culprit after all).  Today Dr. Albin diagnosed me with a uterine fibroid tumor in the wall of my uterus. Couple that with polycystic ovarian disease, abdominal free fluid, endometrial hyperplasia, yadda yadda yadda, and the only sure-fire treatment is a total hysterectomy. I’m scheduled for surgery on June 22nd.

I know I’m still in child-bearing years at age 36, but I also know I don’t want any more biological children.  Heck, raising the four I have now alone has been stressful enough! And with my oldest now off to college, my baby making days are over!  Miss Tatym was quite estatic that she will forever be “my baby”. And I will not miss the way-too-heavy menstrual periods that I’ve had the past five years. Here’s wishing myself a speedy recovery to get on with my life!

*Maybe I should add “Group Health Insurance” to my Date Application Requirements.

The average cost of medical care for a premature or low birth-weight baby for its first year of life is about $49,000, according to a new report from the March of Dimes Foundation. By contrast, a newborn without complications costs $4,551 for care in its first year of life, the report said. Newborns with other kinds of complications, such as congenital defects, have medical expenses of $10,273 on average in the first year. Read Entire Article.

I think $49,000 seems like a low estimate. Considering by definition that a premature baby is one born before the 37th week of pregnancy, I can see how that can skew the results.  My youngest daughter, Tatym, was born over 3 weeks early (thus before the 37th week), but was still happy and healthy and a bouncing 7 lb. 4 oz. I didn’t consider her a preemie at all.

Whereas my twins were born over 13 weeks premature, and they maxed out the $1 million lifetime benefits on our health insurance.  See why I call Macy and Mallory my million dollar miracle babies?

I wonder how much the Octuplets‘ care is going to cost?!  I think I’m going to dress up as Octomom for Halloween this year! Where shall I look for a Plus size costume?