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!

The virtual baby shower that I held for my favorite (and only) sister, Kaitlyn was a huge success! She came away with a lot of new baby gifts for Baby Leila Alexis who was born on July 21st, 2010 weighing in at 8 lbx 8 oz and 20 1/4″ long. She is such a precious baby, even if she is a bit colicky!

Some of the gifts for new baby included Havaianas Baby Butterfly flip flops, Original Beaufort Button Bonnet, Robeez Shoes from ShoeMall, new baby girl gift basket, L’Occitane Mom & Baby Body Lotion, Yellow Monkey Stripes Invitation from Polka Dot Design, Customized Baby Shower Thank You Cards from Storkie.com, Gerber Good Start Backpack, Baby Signs Books & DVD, Melvita Animal Soaps, Boogie Wipes, Baby Dipper Bowl, Bravado Designs Breastfeeding Bra, Coddlelife Anti-Colic Baby Bottles, Guardian Sleeper Security Blanket, Beautiful Diaper Cake from Rattlecake.com, Pillow Pets, Templeton’s Timeless Infant Silver Bracelet, Unique Style Baby Shower Favors and more. And those were just sponsored gifts. She received lots of other great gifts from family and friends and a Brentwood Baby Collection Swing from me. You can see photos of her gifts on Flickr.

Baby Leila was baptized this past Sunday, and I’m proud to boast that I’m her godmother! Shown above is me holding her for pictures at church with her mommy and daddy. She had had enough pictures taken by then! I love you Leila!

Great Gift! Lovely Red Baby Pant Ali Fox Plush Character Toy Doll 8'' Brand New US $7.99 Auction Ends: Monday May-21-2012 5:06:16 PDT   | Watch this Item

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Each year, thousands of children are tragically injured and killed in automobile accidents. In fact, motor vehicle crashes are the leading cause of death for children ages 3 and older. The reason why is that most parents and caregivers don’t realize that their children aren’t properly restrained in their car. The National Highway Traffic Safety Administration (NHTSA) estimates that nearly 3 out of 4 car seats are not used correctly!

As part of Child Passenger Safety Week (September 19-25), the NHTSA is sponsoring FREE car seat inspection stations on Saturday, September 25th (and continuing throughout the year). Use this locator to find a child safety seat inspection station near you. Certified technicians will inspect your child safety seat and show you how to correctly install and use it.

Additionally, the Child Passenger Safety Twitter account (@childseatsafety) will be hosting a Twitter party on Wednesday, September 22nd at 2 p.m. EST. NHTSA experts will be available to offer information and insight on car seats and how to travel safely with children. Use the hashtag #CPSweek to follow along and ask your questions.

Kaitlyn’s baby shower is only two days away, and I have so much to do before then – the main thing being cleaning! The worst part is scrubbing floors and toilets. I have some baby shower decoration ideas, and I do know that we are going with the jungle/safari baby theme. Once I finish dusting and vacuuming the family room, I will work on the Baby Shower Decorations. I received some super cute Babyshower Decorations from BabyShowerDecorations.net – a newly launched website that focuses on helping people plan, host, and decorate a baby shower. Their company has served over 100,000 customers in the past 4 years, and this newest website is exclusively devoted to baby shower planning, favors, and decorating – just what I needed! Now I just need to get my three daughters to help me finish cleaning – wish me luck!

The famous (and controversial) Nadya Suleman, aka Octomom, will appear on ABC’s “The View,” on Wednesday, February 24th, in her first-ever visit to New York City and on the show.

Suleman commented on the upcoming event, “I am elated. I am honored. I love ‘The View’ and can’t wait to meet everyone, my heroes. I can’t wait to see New York.”

This should make for an interesting show as the hosts of the show have debated the circumstances in past shows about the unemployed single mother who chose to have IVF after already having six other children.

I am a participant in a Mom Central campaign for ABC Daytime and will receive a tote bag or other The View branded items to facilitate my review.

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

I’ve been out of the deal loop for a couple weeks as my daughter had surgery, but is now recovering at home.  It is a bit ironic that I recently wrote about breast milk vs. infant formula, and how I did not breastfed my twin daughters. I wished store brand formula which is now sold at Walmart, Sam’s Club, Target, Kroger, Walgreens, CVS, and Babies “R” Us would have been available to me years ago to save 50% off the price of name-brand baby formulas such as Similac, Enfamil and Good Start.

Available exclusively at Walmart, special cans of the store brand Parent’s Choice Infant Formula are currently on sale for only $5.00. Parents have the choice of Parent’s Choice Milk Infant Formula in a 15.5 oz (440 gram) can and/or Parent’s Choice Gentle Infant Formula for babies with fussiness or gas in a special 12.9 oz (366 gram) can.

All infant formulas marketed in the United States are subject to the same FDA standards, so you can be assured that even store brand formula meets minimum and maximum nutrient specifications.

If you are currently receiving formula paid for by the Women, Infants and Children (WIC) program, there have been new changes in the WIC program which may reduce infant-formula subsidies.  So you may want to check into your eligibility and stock up during Walmart’s sale.

If you are not familiar with the WIC program, visit the USDA website for more information and to apply for assistance.

WIC provides Federal grants to States for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age five who are found to be at nutritional risk.

My daughter, Macy has a high pain tolerance. I attribute it to the fact that she endured a lot surgeries and setbacks as an infant.  She was a very high-maintenance child, and I could actually tell when she was sick as she would be still, quiet and not throw her normal tantrums.  So now when she does actually complain of not feeling well, which isn’t often, I know something is definitely wrong with her.

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.

I get repeated emails asking how my twins girls are doing now.  
So, I’ve created this page to keep you all up to date, not only about them/us, but current happenings at PreemieTwins.com….

May 19, 2006
We are finally moving up with Technology!  New Updates and Such will be Posted in our Blog!!   

February 17, 2006

We now have a Forum at ShoppingBookmarks.com!
We have moved our Share Your Story submissions as well as created new Topics, such as Children With Special Needs.  Please “Share Your Story” with us for Inclusion on our Site! If you have an additional topic and/or would like to help moderate the new forum, please contact me.

January 17, 2006

March of Dimes – How Can You Help?  Donate. Participate. Volunteer. Partner. Click for More Details.

December 21, 2005
I apologize for the delays in updates. I invite you read our Christmas 2005 letter I sent out with a picture of my cute kids!

Free PREEMIE Magazine Subscription for Parents of Preemies and Professionals

November 28, 2004

Click to Receive a FREE Child Identification Kit! This kit helps you record all the information, hair samples and fingerprints necessary to find your child if he/she is ever abducted. Request one for your child, grandchild, niece, nephew, student, godchild, etc!

October 21, 2004
I have been busy making up a website detailing how to support certain charities.  I have special sections for Premature Infants and
Seriously Ill Children. I encourage you to check them out.

June 6, 2004
The girls and I attended their NICU reunion yesterday in Omaha – it was their 10th year from graduating!  Not only has the hospital changed names, but they have a whole new NICU ward.  My how technology has changed in the last 10 years!  I, alone, feel aged seeing how young the new nurses look!  We were lucky to get to visit with all of our primary nurses: Monica, Alice and Dianne. After seeing all of the attention (and prizes) that the twins got, my younger daughter, Tatym, was upset that she didn’t get to be in that hospital.  She doesn’t realize how lucky she is to not have been!

May 24, 2004
In an effort to ward off spam, we’ve eliminated all of our PreemieTwins.com email addresses.  If you desire to contact us with questions, comments and/or concerns, please use the Contact Us Form.  Thank you for understanding.

These Links have been Updated:  Read Other Stories and Submit Your Story

February 8, 2004
The twins turned ten last week!  Medical Neonatology technology on has steadily advanced over the last ten years.   My twins were lucky enough then not to be born ten years earlier, as they would have not survived. 

Cool Quote:  There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle. - Albert Einstein, born prematurely (1879-1955)

November 26, 2003
FREE Birthday e-Cards for Twins
Have a Happy and Blessed Thanksgiving from our house to yours.

October 15, 2003
Did you think I abandoned the site?  Nope, just been a little stressed.  After 11 years of marriage and four children, my husband and I got divorced.  Things weren’t good for awhile, so the infidelity thing was my sign to get out. It has been final for a few months now.  The kids took it harder than me.  On top of that, Macy has been diagnosed with Bi-Polar and Obsessive Compulsive Disorder (OCD) and so has Taylor, my older son (something they inherited from their father).  So, this being a single mom of four has really taken a toll on me.  Macy was unexpectedly admitted to the hospital last week.  She had signs of blood poisoning, and they treated her for staph infection.  I’ll try not to be a stranger for so long again…..

February 3, 2003
I added a new picture to Our Picture Page!  I also found some much requested Preemie Patterns – Link on our Resource Page.
Hard the believe the twins’ 9th birthday came and went so fast!  Talking with new mothers of preemies, it seems they rarely come home on monitors now-a-days!  We had them at our house for 2 1/2 years!  I think they helped with my sanity as I didn’t have to go test to make sure they were breathing as I did with my other kids (natural maternal instinct, I think

January 3, 2003 Happy New Year!
Design a free webpage for your baby or twins in a matter of minutes at BabiesOnline.com!

October 8, 2002 New Recommended Resources
MSPI Guidebook/Cookbook for those with Milk Soy Protein Intolerance (Macy has this!)
NutriSystem Whether you want to lose a few pounds after pregnancy or make some extra money, this is great!

September 5, 2002 I have updated the NEC Survey with a few more questions, as new discoveries are being made.  There is litigation that babies given PDA medicine (for the holes in the heart) are more susceptible to NEC.  Also, the use of steroids given the mother before delivery is supposed to reduce the risk of NEC.  So, I incorporated these questions to compare.

I have also added a Free Stuff for Multiples page to the site!  If you know of any additional Freebies for Multiples not listed, please let me know to add them!

August 30, 2002  The girls are adjusting well to the new school.  Macy receives SPED 15% of the day, and Mallory 40%.  Some days I get discouraged because they struggle so with school, but then I am thankful that they are as “normal” and healthy as they are.

July 27, 2002 We have decided to switch our girls from parochial school to public, not only so they can receive more special ed, but so they can be in separate classrooms.  Macy tends to dominate over and talk to Mallory, so this should gain her some independence.  They will be in the second grade.

April 20, 2002 Are you an NICU nurse, neonatologist, developmental specialist, etc?  Request FREE PreemieTwins brochures for your patients.

April 1, 2002 I wrote an article about NEC featured at ThePreemiePlace.

March 22, 2002
I took Macy and Mallory to see Dr. Isburg (a neurologist) yesterday for a check up.  When I said I was concerned that we read for hours every night, and girls aren’t catching on, especially if a word is repeated right afterwards (ie the big big cat), we still have to sound it out twice.  So he asked me a bunch of questions…. Can they tell me what the story is about after they read it?  Not really; they look at the pictures and guess.  Could they tell me what the story is about if I read it to them?  Yes.  He has diagnosed them with Dyslexia.  I reacted that I guess they do tend to reverse some letters around.  He said Dyslexia is much more than that and commonly misdiagnosed.

Dyslexia is not that they are “stupid” but do not comprehend what they read.  I always wondered why Mallory can remember every word to various songs, but not remember what she read.  Or why Macy can recount an exact conversation but now know what she read either.  Dyslexia is usually hereditary, but he feels this case stems from the twins’ rough premature start.

He said to suggest to the teachers to use more visual and verbal teaching methods with the girls.  He said the hardest for them will be around third or fourth grade, and they may need to take oral tests.

The doctor suggested a prescription for Concerta, which is a stimulant drug that improves concentration and alertness.  I haven’t decided if I will try it with them or not.

Also with Mallory’s past, we have a EEG scheduled for Monday. If normal, great.  If not, he will set up another appointment with him.

March 20, 2002
New Womans-Net Forum – 25 Topics, including Preemie Parenting!

March 3, 2002
What do you think of the new site design?  Please Contact Us to let use know!

February 13, 2002
My “preemie twins” are now eight!  Yes, indeed miracle babies.  They are still developmentally delayed, and we have retained them in the first grade. Being determined to send our children to a Lutheran school, I have fought to get the public and private schools to work together for special ed for our daughters.  If you read our “story“, Macy was by far the sicker baby of the two, but Mallory seems to be the most challenged. Otherwise, besides being little for their age (they wear size 6x), they are “normal” little girls involved in ballet, tap dance, and other social activities.  Mallory is the only one to wear glasses so far and still receives Speech Therapy and Occupational Therapy.  We see the neurologist for a check up next month…

If I tend to lapse on the updates, Contact Me with a Reminder!  Thanks.