In case you missed it..

Tweet I'm 20 weeks pregnant.

I thought about doing a comparison shot from 20wks with Klaw...but no.

With another boy.

We are calling him Scream. Why?

Even my midwife laughed at this.

Yep, he's already upped the creepy factor by 11. Definitely my kid.

So, anyways, this has been keeping me busy. I don't do pregnancy well but at least I'm not as sick as I was with Klaw.

I am definitely showing earlier than I was with Klaw, which has been weird. The 20wk ultrasound looked good, everything was where it was supposed to be and working properly. Naturally, like a boy, Scream was very cooperative when the tech went looking for proof of his sex.

Does that ever change?

We had a nice Thanksgiving and got to see a lot of family members. My aunt & uncle conveniently live halfway between Chris's mom & dad's homes, which is nice. My mom & nana were able to come up so we got to see almost everyone in one fell swoop.

3 of the 4 cousins

The cousins had a great time...even though Klaw wanted to take ElfBabyK home with him (she is the tiniest, cutest thing ever). We've also noticed that ElfBabyK's twin brother, W, favors Klaw. Which is odd. I'm going to assume Brooks (BIL) and I are related somewhere down the line...it's safer that way.

Klaw also got a piggy back ride from my cousin, Luke...

Yes, 4 legged family members outnumber the bipeds on my side of the family.

There are a few other things on my plate now, too...but I'm waiting a little while to unveil them.

Any big changes on the way in your lives?

For the Love of Kathryn (TTTS)

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Today, a dear friend of mine, Alexa, is sharing the story of her experience with Twin-to-Twin Transfusion Syndrome (TTTS).

 Alexa and I met while we were both living in Charleston, SC and became fast friends sharing a love of laughter, good food, and, well, shenanigans. We met through a mutual friend, eventually lived in the same apartment complex, and she helped me get a job with her at a tiny little French restaurant. Later, I moved on to outdoor education and running a canoeing program while Alexa learned about four different languages in her spare time (I may be exaggerating, but not by much) and joining the military. Years passed and we have reconnected on another level as mothers.  Alexa's experience with TTTS was the first time I had ever heard of the syndrome and I find her story informative and her strength inspiring.

For the Love of Kathryn

Did you know that TTTS kills more babies than SIDS?  TWICE as many babies!  Was your first question after you read that “What the heck is TTTS???”  A year ago, that would have been my reaction.  Yet I bet everyone is familiar with SIDS.  Well, I am altogether too down and personal with TTTS because it killed my daughter.  

TTTS is Twin-to-Twin-Transfusion Syndrome.  If you EVER know of anyone pregnant with identical twins, you need to tell them to stop, do not pass go, and head directly to the TTTS Foundation webpage.  (Contact information at the end of this post.)   And don’t allow them to be like I was.  My thought was “What can some woman in Wisconsin do to help my situation??”  So I never made that call to Mary at the TTTS Foundation.  And that will haunt me forever. Turns out, she has saved a LOT of babies. 

I was stupid.  Ignorance is not always bliss.  In my case, ignorance is a lifetime of pain and loss.  Earlier intervention, more ultrasounds, knowing the signs and symptoms, knowing the treatment options (since even many OBs do not!) can help change the outcome for babies.

Our story is written.  But I can try to help change someone else’s story.  That is why I am dedicated to raising awareness.   So to do just that, I’d like to share some of our personal journey.

September 28, 2011.  It was approximately 1:30 p.m.  My husband and I watched the ultrasound screen in amazement.  Identical twin girls!  Even though we found out very early, at just six and a half weeks, that we were pregnant with twins, we still were reeling from the idea!

This being our third pregnancy, we were experienced with the 20 week ultrasound, but I wanted my husband to be there anyway.  I knew he’d regret it if he never got to see how the awesomeness of the two babies interacting in the womb.

Thank the Lord he was by my side that day.  

The ultrasound tech seemed different to me that day.  There was something about the way she was telling me the information.  She was very matter of fact, and seemed to be in a hurry.  I commented on how big these girls were going to be when she told us Baby A already weighed 15.8 oz at 20 weeks and 3 days.  And how odd that Baby B only weighed an estimated 8 oz…

Then, the words that forever changed my world.  “See this black area in Baby A’s belly?  This is fluid.”  As soon as the words came from her mouth, tears started streaming down my face.  My husband looked at me and laughed.  “Don’t start imagining scenarios!”

“This is bad hon,” I told him.

And it didn’t take much longer before he understood the degree.

The ultrasound technician hurried through the rest of her exam and told us that we had TTTS and the Doctor would tell us more about it.  As we sat with the doctor, she told us the basics – when twins share a placenta (called monochorionic-diamniotic or mono/di twins – one placenta, two sacs) there is a high risk that they will not share fluids from the placenta equally.  One twin winds up “donating” fluids and the other receives too much.  This is why there was such a size difference in the babies.  The “black” area in the belly indicated hydrops fetalis – or a build-up of fluid in the baby’s abdomen, indicating heart failure.  

Not all babies with TTTS develop hydrops… the craziest thing about TTTS is how varied the outcomes can be.  Single loss, double loss, double survivors, some with severe disabilities and those that have no disabilities at all.  And then, because many of them are born so premature, they are faced with all of the challenges of severe prematurity.  There is no certainty about anything with this disease of the placenta.  But one thing is certain – you can’t fight something you know nothing about!  So learn, be aware, and share that awareness!  You never know when someone in your life may be impacted by this!

The card below gives some very key points and information.  

The details of the next few minutes, hours, days, weeks would fill a novel for me to write.  If you are interested in knowing what transpired in the months to follow, please come visit my blog “No Holding Back”.  Luckily our story doesn’t end completely dismally.  Our donor baby, Tiny as I refer to her, although only 1lb10oz at birth, has overcome all odds and is a perfectly healthy and very happy baby!

Thanks to Dana for allowing me to use her Blog as another opportunity to spread awareness!

An Interview with Colby Wren #KnowAboutMito

Tweet Last fall, Colby Wren hit the front page of  "mito" news when he was interviewed by several news outlets, including the Atlanta Journal Constitution and CNN. He was a baseball player for Georgia Tech, is the son of Braves Manager, Frank Wren, and lives with mitochondrial disease. When I read an article and found him on twitter, I immediately sent him a tweet thanking him for going public with his struggles.

We are big sports fans in this house and I have mentioned our hopes that Klaw will be the best pitcher ever recruited by the Chicago Cubs. When we got the VLCAD Deficiency diagnosis, we were afraid that Klaw would no longer have the option to pursue sports even if he desired it.

Over the past year, I've had the opportunity to get to know Colby better and I'm glad that he can be a role model for Klaw and other kids with mitochondrial disease. Colby's story highlights how different mitochondrial disease an cbe for each person affected and it serves as a source of hope and determination.

Colby took the time to answer a few questions for me to feature on this blog during Mitochondrial Disease Awareness Week:

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1 - Thankfully, many infants & children are being diagnosed with mitochondrial disease. You weren't diagnosed until you were high school. What were some of your thoughts when you got the diagnosis?

Some of my thoughts were how am I going to have to change my life/lifestyle and what am I going to have to give up or start doing differently.

2 - As an athlete, you put your body through more stress than the average person. When you add mito to the equation, you have to take even more precautions to maintain your health and stamina. Describe a typical day with how you prepare yourself for baseball and how you recover.

Well, now I am a student coach at Georgia Tech so I have had to change up my routine. My old routine was wake up for a 6 AM workout and then hope and pray that I had enough time for a nap before my next class. Practice from 3:00-6:30 and do it all over again. Things that helped me and my body recover were proper nutrition, knowing my personal limits in workouts and exercise, and as much sleep as possible throughout the day.

3 - Looking back on your younger self and knowing what you have learned about mito, what were some of the biggest warning signs that are clear with 20/20 hindsight? 

Well my gastrointestinal problems have been apparent since I came home from the hospital. (bad reflux and couldn't hold down food as a new born) I would always get sick always throw up, but since I never truly played a sport that was extremely high intensity until I was in 4th grade I didn't see a lot of the more intense signals and problems occur.

4 - What advice do have for parents of mito kids who are athletically inclined, to the best of their abilities? What should we pay attention to when our children are playing or exercising that a child may ignore because they are having fun?

This is my personal opinion and knowing that each child is different here are some basics that can be applied to a larger spectrum.

1. Know your body and your personal limitations with energy. 

2. Be very careful about heat and hydration. The hotter the days the more water needed and the less activity should be accomplished. 

3. Slowly work into athletics or exercise. Never just jump into things until you have specifically talked with your doctor/physician about what he thinks should be your boundaries and work from there.

4. There is a big difference between pushing yourself physically and being stupid. There are times when a little extra push or energy is okay, but then again it is up to the individual. DON”T try to impress people and end up hurting yourself I have done that many times and it never ends up doing me any good in the long run.

5 - What advice would you give a kid like Klaw who will likely face similar issues that you have dealt with should he pursue athletics?

I would give any kid with the ability and well-being to play athletics to pursue them and just enjoy every bit of them. There are some kids who just hate sports, but if you have the passion or the itch you just have to go for it. Keeping yourself active is not only good health wise it is also good for you energy levels. Whatever you can physically do can help your body and have fun at the same time. It teaches life skills and personal skills that cannot be taught by a book, but by just experiencing it first hand.

6 - Can you give some info in the foundation you work with and how others can get involved?

The Foundation for Mitochondrial Medicine supports the development of the most promising mitochondrial disease research and treatments of the many forms of mitochondrial disease. Formed in 2005 and renamed in 2010, our Atlanta-based non-profit organization financially supports treatment based research. From functional brain MRI studies on cognitive fatigue to testing of new drug compounds, including the first FDA-approved drug treatments that began in early 2010, FMM focuses on supporting Institutional Review Board (IRB) or FDA approved studies. Stated simply: we're funding the cures.

The foundation's stewards and founders are parents of patients and medical experts. We were created to accelerate the development of the most viable mitochondrial disease treatments and therapies.

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To read more about Colby Wren's story, check out these articles:
Son of Braves Manager Battles Genetic Disease (AJC)
Human Factor: College Athlete Battles Mitochondrial Disease (CNN)