Macy and Mallory were due for their annual eye exams this past week. We really like our eye doctor, but unfortunately his office doesn’t participate with our vision insurance, EyeMed (don’t get me started on my rant about insurance companies dictating what doctors we can and can’t see). Luckily, since the girls have a history of Retinopathy of Prematurity (ROP), our medical insurance (Blue Cross Blue Shield) will cover the exams, and I only have to pay our $25 copay.

Of course, BCBS doesn’t cover the cost of eyeglasses or contact lenses, so me being the bargain shopper that I am asked for a written prescription of their powers and will turn to the internet to find some affordable eyeglasses and contact lenses. Macy’s vision has changed a bit, and the eye doctor suggested that she wear prescription eyeglasses while driving and while at school. Mallory’s vision has remained the same, but she still needs new contact lenses.

I plan to check out Zenni Optical, the #1 rated online eyeglasses store that offers complete $6.95 prescription eyeglasses plus is currently having a “Buy 2, Get 3rd pair free” promo! Virtually any prescription fashion eyeglasses and/or sunglasses, even bifocals and/or progressive eyeglasses, can be ordered online from Zenni Optical. You can even try on the frame online with their “Frame Fit” system.

$279 MOSCHINO DESIGN EYEGLASSES M3173V SILVER WITH CASE US $99.00 Auction Ends: Tuesday May-22-2012 7:05:44 PDT   | Watch this Item

vintage gold plated eyeglasses rare US $35.00 Auction Ends: Tuesday May-22-2012 7:06:32 PDT   | Watch this Item

I thought my “preemie twins” were done giving me death scares. I thought wrong.

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!

This week CNN published Study: Average preemie costs $49,000 in first year.

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?

If you read our NICU story, you know that both of my twin daughters were diagnosed with Necrotizing Enterocolitis (NEC) where the bowel become infected and dies.  Macy had seventeen inches of her small intestines removed and a temporary colostomy.  Mallory only had a few centimeters removed and was fortunate not to have to have a stoma put in. Back then (15 years ago), the mortality rate for infants infected with NEC was 77%.  Thankfully my girls beat the odds.

I subscribed to TWINS Magazine when the twins were still babies, and met many new friends in similiar situations through their PenPal section.  This is before we had the internet – imagine if I had access to all of the information online back then!  I corresponded with several other moms of preemies, and I was especially interested in hearing from those who had experienced NEC firsthand.

I found some interesting trends among those that wrote to me, so when I started a website dedicated to my “Million Dollar Miracle Babies”, I made an online survey for others to participate so I could see if I got the same conclusions.  Here are some statistics thus far…

Obviously my daughters skewed the stats being female.  And usually in twins, only one (and usually the first born) has NEC.  Whereas both of my daughters suffered from it, but Macy (Twin B) was worse off.  My girls were formula fed and given meds for PDA, though.

If you or someone you know have had experiences with this deadly disease, I would love to hear your results by completing our NEC Survey.  All of your answers will remain confidential.

I would also love to hear your NICU story!  Share your story to be posted here on PreemieTwins.com!