A Month To Remember

Most people think of November as the month of giving thanks. But I feel overwhelming gratitude in September because of the miracles that I was given 14 years ago. I was only 25 years old and I had to make huge decisions on behalf of my unborn babies who were fighting a battle for their lives. 

Dr. Troy Porter - Maternal & Fetal Medicine, Obstetrics & Gynecology

Dr. Porter was the one who noticed something was wrong with my twins at just 8 weeks gestation. He told me that my little Abby was "stuck."  I couldn't understand what he was telling me.  Stuck on what??  His online bio says that he has been practicing for 16 years, which means he had only been practicing for 2 years when he diagnosed me. I always felt calm when Dr. Porter was around. He had a great way of explaining things to me in a way I could understand.

What is TTTS?

• -Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.
• -TTTS affects identical twins (or higher multiple gestations) who share a common monochorionic placenta.
• -The shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins.
• -The common placenta may also be shared unequally by the twins
• -The events in pregnancy that lead to TTTS are all random.
• -TTTS is not hereditary or genetic, nor caused by anything the parents did or did not do.
• -TTTS can happen to anyone.

 As fate would have it, I had heard about an experiemental procedure to help with Twin to Twin Transfusion Syndrome. A woman in Idaho had the surgery and I had been talking to her husband on a Twins message board. I knew without a doubt what needed to be done.

 I was 18 weeks pregnant when we flew to Milwaukee to have laser surgery to save my babies' lives. I was only the 23rd patient to ever undergo this procedure which was considered experimental.

Julian E. De Lia, MD, FACOG, FACS 

Dr. De Lia began investigating TTTS in 1983 and pioneered fetoscopic placental laser surgery in 1988 at the University of Utah, Salt Lake City. He subsequently brought his life-saving surgery to Wisconsin and Illinois.

I have no doubt that Dr. DeLia saved my babies.  He pioneered the surgery right here at the University of Utah, but I had to travel to Milwaukee to have the surgery. Abby's middle name is Julia in honor of him. 

I was ordered on bed rest for the duration of the pregnancy so that my precious girls could have the best fighting chance. As I was recovering from surgery, I was interviewed for a twin support group. 

How were you diagnosed?

Nikki: The main complication I had was that baby B was "stuck", meaning she had no fluid around her (shrinkwrapped in her sac) so she couldn't move much at all. This is actually how TTTS was diagnosed for us. We were originally told that our twins were monoamniotic because they couldn't see the second sac. So, I would put a flag out to all parents who are told that they have monoamniotic twins.. This is a big indicator of TTTS and it usually turns out that there are indeed two sacs. 
The treatments can vary from monitoring, to serial amneiosentisis to laser surgery. Share your experience:

Nikki: The complications for the babies hadn't shown up in our case yet (thankfully). The problems from TTTS are that the bigger baby who is getting all the blood would eventually die of heart failure because of trying to pump too much volume with every beat of its heart. Baby B, who is shunting all the blood, would eventually die of lack of nourishment. Suprisingly though, when TTTS occurs later in pregnancy (late enough for the babies to be delivered), the smaller baby is usually the healthier of the two.. The heart problems are the most difficult to deal with once the problem is there.
The treatments can vary from monitoring, to serial amneiosentisis to laser surgery. Share your experience: 
Nikki:There are two methods of treating TTTS.. The most effective is the surgery because it treats the cause of TTTS.. Dr. Julian De Lia is the doctor and he now practices in Chicago. The surgery is still in the "research" phase though De Lia has it all routine now. It takes about 17-25 minutes to actually get in there and get the job done. The other method is serial amniocentesis (spelling most likely wrong).. This is where they draw fluid off of the bigger baby every 2 or 3 days in hopes of keeping the uterus stable.. Sometimes it even seems to help the situation in that the smaller baby (for reasons unknown) actually starts doing better. The problem here is that couples who think the surgery is their best option should have absolutely NO invasive action taken prior to the surgery. The reason is that every time the uterus is punctured for the amnio, scar tissue builds and sometimes bleeding into the fluid occurs.. Dr. De Lia needs absolutely clear and uncontaminated fluid and a smooth surface to operate with. We figured that if the surgery was not successful then we could try the amnio. Luckily for us, the surgery seems to have been 100% effective. We were diagnosed with TTTS when I was 16 weeks along.
I am not sure what the babies were weighing at the time, but I do know that they were 2 weeks apart in gestational size and the gap was increasing. We are now right on track with Linzie (Our bigger baby A) weighing around 1.5 lbs, and Abby (Donor baby B) weighing about 1.25 lbs. They are each around 12 inches long. They are still about 10 days apart in size, at 26 weeks gestation.

My second set of twins were born on September 27, 1996. They were 8 weeks early because Abby had stopped growing when the placenta finally gave out. As a mother, I had done everything I could for them. I had to let go and put my faith in a Higher Power and the skilled professionals caring for them in the NICU.

Within hours of their birth, Linzie was taken under this man's expert care.   

Robert E. Shaddy, MD

Chief, Division of Cardiology

Professor of Pediatrics, University of Pennsylvania School of Medicine

Immediately he became Linzie's angel on Earth and the love we have for this man will never end. We owe her beautiful life to his expert care. He was so much more than just her cardiologist. He was our friend. The many children in Pennsylvania are so lucky to have him there. We love Dr. Shaddy! 

It was a brutal month of highs and lows before we were finally able to bring them both home. Surprisingly, even with her heart issues and being the smallest baby to ever have that type of heart surgery at PCMC, Linzie came home first. The Mama Bear in me fought to have Abby released 3 days later because I knew in my heart that she would finally start to gain weight once she was reunited with Linzie. Immediately after they were born, Linzie was life-flighted to PCMC and they had been in separate hospitals ever since. I am so thankful the doctors trusted me because my little Peanut started gaining nearly a pound a week once she was able to snuggle her twin every day. They were inseperable!

*A rare procedure to save a mother's twin daughters has paid off for a Salt Lake woman. 

*(KSL spelled Abby and Linzie's name wrong and I am no longer a "Randquist") 

Did all of that really happen to me? Fourteen years later, I am amazed as I think back on how huge the decisions were and how lucky we are that we had a happy ending. Two happy, healthy girls to complete my family. I am a lucky mom indeed! 

Life Lesson Number Two

Be Accountable

I often talk out loud when I am composing something in my head. Today when I was forming the thoughts for Life Lesson Number Two, I said said the title out loud... and then I laughed.  Try it.  Say "Be Accountable" out loud.  Then join me in a giggle as we imagine a roomful of confused and worried people who think we are advising them to "be a cannibal."   Haha! I am so easily amused!

As I was talking with the girls this afternoon, I explained to them that being accountable means being able to stand up and defend your actions with clear conscience and absolute conviction. Before making decisions, ask yourself if you are willing to stand up in front of perfect strangers as well as those you love and defend your choices. If the answer is no then you might want to reconsider your actions.

Life is a series of choices and not all of those choices will have favorable outcomes. Being willing to take responsibility for the bad as well as the good outcomes is a true testament to a person's character.  I am certainly not immune to making mistakes, but I am willing to accept responsibility for the consequences of my actions. Believe me, I know how easy it can be to hide until the storm has passed  but hiding never solved anything and eventually life will catch up anyway.

Yes, I believe in Karma. 

I have experienced dark days when I could not believe that the Universe allows some people to get away with terrible deeds, seemingly without consequence. I have cried into my pillow after being betrayed by someone I loved, and I openly questioned how people can skate through life without being held accountable for their actions. Then (sometimes years later) life catches up. I have seen those same people go through hard times, experience heartache and struggle and then throw their hands to the sky, wondering why life is so cruel. That person never learned to be accountable for their actions and as a result, their life is constant chaos and misery.  I doubt  they will ever understand that their actions, and absolute lack of accountability are a very big reason why their lives will always be unhappy. A little accountability goes a long way.

Interestingly enough, being accountable is so much easier if you are paying attention to Life Lesson Number One.  Being accountable is not always easy, but I promise you it is worth it.

Life Lesson Number One

I have been mulling this idea around in my head for a while now, and I think it is time to bring it to the blog-o-verse. Anyone who knows me, really knows me, will tell you that I have a set of rules that I live by.  Not the ordinary clean your room and wash behind your ears kind of rules.. (Don't get me wrong, those are good practices in general, just not quite what I am going for here.) No, the rules I want to write about are more in the category of  life lessons that, I believe, will mold and shape a person's character for the better.  I've been on this sparkly blue planet for a while now and I think I can say with a measure of experience that I do know what I am talking about.  I hope to be able to spend some time discussing each of these Life Lessons in detail, for as long as it interests me to do so, and hopefully something useful will come of my musings.  If nothing else, my girlies will have even more evidence that their mom is a nutjob! (Albeit a nutjob with really good Life Lessons to share!)

If you don't agree with any of the Life Lessons I post here, that's fine.  You are welcome to start your own blog and write about everything that you believe in. These Life Lessons are mine, and although you are welcome to adopt them and use them in your own daily life, especially if you happen to be a member of my family, you will never take them away from me. So don't even try it.

Life Lesson Number One

Be kind in everything you do.  Seems simple, right? I am often shocked at how the world we live in is seriously lacking in kindness. When did we stop believing that the way we treat other people matters? 

I grew up in a house where we went to church on Sunday and I was taught "The Golden Rule" as a child. As a rule, it's okay, but it smacks of religion and, let's face it, it's a bit antiquated. (Is it wrong to call the Bible antiquated?) 

Do unto others as you would have others do unto you. Seriously? When I go to the hairdresser, I want her to do unto my hair. But if I follow The Golden Rule, does that mean before I get a cut and style I have to do unto the stylist's hair first? Believe me, I don't think she'd appreciate it, and then who would do unto MY hair? I'd have to go around butchering half of the town's carefully coiffed hair just to find someone who would surrender and do unto my hair like I wanted in the first place! I'm exhausted just thinking about it! The same goes for the mailman, the butcher, the baker, and even the candlestick maker. You get the idea. If we are going to insist on continuing to use The Golden Rule, it would have to first be rewritten for modern times.

Here are some ideas for rewriting The Golden Rule:

• Do unto others as they would like to you do for them because, frankly, if they wanted to do it or were capable of it themselves, they wouldn't have asked you in the first place. Others will do unto you in a manner that you will find pleasing and appropriate to the amount you paid for their services in money or trade.
• Do unto all others, regardless of race, sex or religion,  in a politically correct manner, exactly what they have asked of you in a legally binding contract so that you will not find yourself in litigation later.
• Do unto others as they have earned through their own deeds and actions. In my world, respect is a two way street, fellas. If you earn it, you'll get it! 

See? All that doing unto others is complicated and just plain exhausting.  I gave it up years ago for the simplified version.  Be kind. 

My kids have heard it a million times. Be kind!  All I have to do is look them in the eye and say, "What is my number one rule?"  Even the hubby knows what I am talking about. I have learned over the years that we cannot ever control the actions of others, so wishing for them to treat us the same way is complete nonsense. Standing around sulking about how you were nice to someone but they weren't nice to you in return won't solve anything either. Get over it.  That's all you can do.  Going to bed with a clean conscience, knowing that you were kind and did all you could do, is all anyone can hope for at the end of the day. The rest is out of our control.

I'm not saying that you should try to be best buddies with someone who uses your heart for target practice, and I'm not suggesting that you give up all of your worldly possessions and go live on a mountaintop in Tibet either. Kindness doesn't have to be wrapped up in a Mother Teresa gift box with a Gandhi bow on top, it just has to be something that comes from the heart. It's that simple. 

I one hundred percent believe that so many altercations could be avoided, so many hurts healed, if people would take the time to practice kindness in their words and actions. If you see someone having a bad day, give them a smile or a hug... you'd be surprised how powerful that can be. When someone is upset and wants to vent, take the time to listen and let them know you understand their feelings.. you don't have to agree with them, but everyone is entitled to their feelings and sometimes all they want is someone to listen. Do kind things for other people. Help someone with their chores or their homework, bring them a treat for no reason whatsoever. Take the time to say kind things to others. Don't ever assume people know how you feel - and even if they do know how you feel, it is really nice to actually hear it from time to time.

I always tell my girls that being kind is something they will never regret in their lives.  Did you know kindness is contagious? Try it and see what happens! 

Looking Forward

At this time last year, our hearts were heavy. Broken. We mourned the loss of one of the greatest loves of our lives and suddenly the world felt wrong. Back to School excitement was put aside and we tearfully added one more stop to our busy shopping schedule. One more outfit to purchase for each of us.. something to wear that would be appropriate for a funeral.

We didn't know it then, but we were about to embark on a tough year filled with too much sadness and loss. We forgot what it was like to live without pain, sadness and regret for all the things that would never be.
As time passed, I observed each of us coping in different ways. Some needed extra love and affection, while others needed space. Some of us cried openly, even as an aching silence crept into our home. Occasionally there were feelings of guilt if we had a good day, but mostly I had to learn how to accept the feeling of helplessness and just be there for my girls as we mourned the loss of friends and family gone from our lives much too soon.

If mortality was our lesson then love was the anchor that kept us from drifting apart during those turbulent months.  Over and over, I reminded my girls that it was ok to cry. I believe with all my heart that tears are a gift... a way to release the overwhelming pain and then rest when the tears subside. Last year we cried more than we ever had before.

Here we are one year later, about to face the first day of school. This year, the girls are planning on being there when that first bell rings. We have shopped and prepared, discussed and planned. Everything seems in order... except we had the shadow of 2009 hanging over us.

So I decided to do something about it.

I wanted to give the kids something positive to think about as they begin the school year. Abby and Linzie will finally get to have their first "first day" of Junior High and Carley and Madi will have their last first day of  High School. (Ouch!) And Emily...  well, she just might get a driver's license this year, so watch out!

If those aren't things to celebrate then I don't know what is!

I thought what we needed was a party and I was determined to make it happen.Yesterday we held a "Back to School" party for all the adorable kiddos in our lives who are returning to various schools and preschools tomorrow morning. Bill was in fine form as he manned the grill, we had lots of food and the grown ups and little people we love arrived by the car load!

Earlier in the day, Carley and I had made a trip to the store to get fun little things to fill bags that Carley labeled "Back to School Survival Kit." We filled the bags with crayons (Not just for the little ones), cookies, pencils and pens, happy stickers, note pads, play dough, hand wipes, elastic bands in fun shapes, suckers, nail polish (for the girls), color changing hand soap (for the boys), animal print band-aids, cupcake scented body spray, kool-aid flavored chap stick, gum and tic-tacs, and a ginormous bottle of bubbles on which Carley had written, "Don't blow off your homework!"

 The squeals of  surprised delight and laughter were music to my soul. The little ones beamed from ear to ear and the big kids also enjoyed the fun. They made plans about where each item would fit in their backpacks and talked about how fun it would be to blow bubbles at the park across from the high school. The little ones didn't waste any time and opted to enjoy the treats right away!

My heart felt uplifted and I knew that this was the perfect way to kick off the new school year. I am certain the kids enjoyed it too. We celebrated the great things to come in 2010 and made sure the adorable kiddos all knew how special they are. I listened to them talk excitedly about their classes, teachers and friends that they have missed and I smiled. That childhood excitement is exactly what I had hoped to tap into and it was happiness in the purest form.

Girls, I hope each of you always remember how special you are! You are so smart, funny, talented and above all, kind.  Remember all the things I have taught you and go out and learn a bunch of new, great stuff! Please try to keep the last minute homework to a minimum... remember that your mama is too old to be staying up all night making posters and writing book reports. Don't be afraid to try new things and make lots of new friends. Remember that they are probably just as shy as you are! I know you will always do your best and I am so proud of you!

It is going to be a great school year!

Missing Person Report

Today I thought I'd explain my absence from the blog-o-verse.  Or, as I frequently say scream in my head,

 "WHERE THE FREAK HAVE I GONE?!!" 

This is a picture of a black hole. Or a cosmic toilet flush.. Either way, I think I'm stuck in one of these. But I think I lean more toward the toilet theory because I wouldn't say I'm feeling Stellar.. more like crappy! (Get it?)

Actually, I can't help but notice that no one has reported me missing, no one has called to ask if I'm conscious or breathing, and no one has volunteered to come over and clean my house.  (My kids are going to be really annoyed by that last attempt at humor and I'll explain why in a bit..)  For those that are dying to know, I am conscious, even when I don't want to be, I am breathing - although a lot of time through clenched teeth, and the house is getting clean... sort of..  sometimes. 

So what is my deal? Quite simply, school starts on Monday. MONDAY! And I work for an online high school.  There are students to enroll, orientations to schedule, computers to assign, staff to placate, and mountains of paperwork to create and file! I can't remember the last time I had a weekend or an evening off, my email is up in the thousands and my phone never quits ringing. That's right, the school phone is a cell phone and like a tick burrowed in deep, it goes everywhere with me. 

I am beat to a pulp and so brain dead it isn't funny.  

But the silver lining is that my family is rockin' awesome! The girls clean up the house with gentle reminding, a few have resorted to going to work with me so they can remember what I look like, and they always greet me with a smile and "I missed you, mom!" Sweet girls, thanks for being so forgiving when your overworked mom falls asleep at dinner, forgets words in the middle of a sentence, and can only stare blankly when asked a question. I appreciate the fact that they are old enough to handle school shopping somewhat on their own.. and I really hope they will forgive me someday for not being there.

This too shall pass.  I hope! 

The People In My Blog Neighborhood

Each morning, when I wake up, I grumble.  A lot.  I'm not really a morning person. I'd like to be... but it's just so eaaaarrrly.  I could totally be a morning person if it happened later in the day! To ease the pain of being a night owl that is forced to wake up early, I grab the laptop from under the side of the bed and I take a stroll through my blog neighborhood.

You guys should see my neighborhood! Unlike my actual neighborhood in my real world, I really like my blog neighbors. Each one was hand picked by me, and I can swap them out whenever I feel like I need a change. It is much more satisfying than rearranging furniture. I mean that!

*Side note: My girls love to rearrange their furniture. I don't know if I am missing that genetic compulsion or if I've just grown out of it, but I like my furniture where it is, thankyouverymuch!

So I love my virtual neighborhood... and I also happen to love vintage Sesame Street clips. No other television show ever taught me so many fundamentals of life. Seriously. How else would I know that NEAR means my lovable furry pal, Grover was closer to me, and FAR meant he was a tiny speck of blue? I can also attribute my rudimentary understanding of Spanish to Sesame Street. To this day, when I see the "Cerrado" sign at my favorite local farm, I proudly exclaim to anyone in the vicinity that the farm is CLOSED! Boo-yah, look who can read Spanish!

I remember vividly the day that I introduced my husband and my girls to my favorite Sesame Street aliens by way of You Tube. We spent hours... at least an hour...  some quality minutes laughing hysterically at the "Yip yip, ah-hunh ah-hunh" antics of those mop-like Muppets.  To this day, you can hear one of us imitate the aliens saying "chiiiiick-en" and then at least one of us laughs hysterically rolls our eyes at the dork that brought it up.. again. (Hubby just came in while I was previewing the link and he laughed! This is good stuff I tell ya!)

This morning as I was reading through my favorite blogs, I genuinely appreciated the fact that I can experience such diverse views of life on a daily basis.  I am charmed by comedians, gently advised by others who have "Been there, done that", and I choke up over the adversity others face. Thanks to those people and their awesome writing skills,  I laugh.. I cry.. I stare at the screen in amazement... and I never, ever walk away without feeling immense gratitude for the blessings in my life.

Today I was thinking how these blogs are my virtual neighborhood and suddenly, a favorite Sesame Street song popped into my head. Just like that, a light bulb went off.  (Isn't that how all blog posts are born?) So I immediately went over to You Tube and started surfing some vintage Sesame.  Is there a better way to start the day? I don't need coffee, I need some Ben Stiller and Tele!

To my blog friends, I hope you enjoy the clip I scrounged up for you today. I'm sure it will roll around musically in my brain all day.. I may even hum or whistle while I work. I especially hope that my new friend, Abe,  over at the Blog O' Cheese will get a kick out of this because it is kind of fitting for him.

Roll It!