One Year and Counting

One year. Three Hundred Sixty-Five days. Eight Thousand, Seven Hundred Sixty (mostly sleepless) Hours. Five surgeries. Countless prayers.  A million smiles. A lifetime of precious moments.  Ups. Downs. Victory.  One year!!

Our double Twin-to-Twin Transfusion Syndrome (TTTS) survivors celebrated their first birthday today!!  I'd like to say we had a big elaborate birthday party but its more like a big sigh of relief.  We made it!!  We can stop holding our breath.  We get to keep them. :)

Happy Birthday Twins!

Birthday Girl Addie

Birthday Girl Kallie

Time has a different filter now so please forgive me for the pause in posts.  Life used to be a progression of events and activities that built on one another moving us in a meticulously planned direction.  I suppose in many ways it still is, it is just that the plan is not ours and the definition of success has been majorly redefined; we had it all wrong, success is loving deeply in all of the hard places. It's that easy and that hard all at the same time.

Sadly many people spends their days splashing in the shallow waters of what the world tells us is right and good. In reality it is just a big puddle void of true life.  (Trust me.)  It's not entirely their fault; not everyone has the same opportunities to love like we've been given.  We are one of the lucky few who have been pushed into the deep-end and forced to sink or swim. I love sharing my family's story so that other people can experience the joy and wonder of living, loving, and trusting deeply.

Our twins, who are the youngest of four small children, both have cerebral palsy from brain damage they endured in the womb from TTTS.  One is profoundly deaf, one has strabismus in both eyes.  At first glance you might think that they have a lifetime ahead of them overshadowed by the lasting effects of TTTS, but that's just what it looks like on the surface; the truth is so much deeper.

I know with all of my heart and soul that they will use the shadow as the backdrop for the light inside of them to shine.  And shine it will!! It will be a million times brighter than the birthday candle on their cake. :) Just wait, they will amaze you.  Actually, don't wait - they are already amazing. Come to think of it, so are you, so I invite you to join our hands and be the light our world so desperately needs. Xoxoxoxoxo.

Matthew 5:14-16

You are the light of the world.  A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others that they may see your good deeds and glorify your Father in heaven.

Inspirational Quote: 

Happy birthday to you, Happy birthday to you, Happy birthday Addie and Kallie, Happy Birthday to you! (I will never get tired of singing this to them!)

My Prayer:

Dear Heavenly Father, Thank You for these precious gifts from Heaven.  They are such an integral part of our family, so valued and loved.  Thank You for getting us to this very special day, there were many moments I wondered if we would get here together, but You didn't have to wonder - it is all part of Your magnificent plan.  I trust Your plan wholly and completely and I am looking forward to each day and each year ahead of us.  Please give us the strength and courage we will need each step of the way.  I also ask that You please help all of our children, and all of Your children reading about our story, feel valued and feel Your love in their hearts so that they may shine brightly for You.  In Jesus' name, Amen. 

Say "Yes"

Today is a special day.  It's a day of reflection, and celebration.  Exactly one year ago today we said "yes" to God.  That "yes" completely changed the trajectory of our lives and opened the door to blessings I didn't have the courage to even dream about.  There have been bumps and sharp turns, more than I care to count, but it has also been (and is) exactly perfect.

On this day a year ago we found out our twins had advanced Twin-to-Twin Transfusion Syndrome (TTTS).  At 15 weeks into the pregnancy it was a death sentence for both of them if we did nothing.  If we wanted to save our babies there was only one option - to leave our home in St. Louis and travel to Denver for emergency inutero surgery.  The decision had to be made that day.  Travel arrangements and doctors appointments with our new fetal care team had to be booked immediately.  There literally was no time to spare.

We could say "no" and go home to resume our normal lives; that was always an option, but doing so would mean both babies would die within a week.  Or, we could say "yes" to HOPE, but doing so would mean losing all control over our circumstances.

On average, the surgery adds 8-10 weeks to a TTTS pregnancy.  Odds were we would deliver between 23-25 weeks gestation.  (A typical pregnancy is 40 weeks gestation.) We are educated people, we knew the risks and challenges babies born between 23-25 weeks face if they survived such a premature delivery.  We knew our girls were likely to have disabilities.  We knew what that would mean for our family.  We had to make a choice: yes or no.

We said "yes" (that much is obvious if you've been following this blog).  We said yes to life.  We said yes to hope.  We said yes to God's will.

We had no idea what would happen, but He did.  We had no control over our situation, but He did.  He had a plan that would shape us into the people He intended us to be.  It required us to let go of everything that felt comfortable and hold onto hope.  Letting go was so very, very hard, but it was the only way to love - and live - the life He planned for us.  Hope was all we had.  Fortunately for us, love and faith go hand-in-hand with hope, it's a packaged deal.

Looking back over this past year I don't think we would be where we are today without that hope, love and faith.  Without it I don't think we would have had the courage to let go and trust in His plan for our lives.

Our girls were born exactly 10 weeks after the surgery.  They are healthy and strong - strong enough to overcome all the challenges they face. They amaze me every day.  Their mere presence is proof of miracles.  Nothing is impossible for God.

They aren't the only ones who amaze me.  My husband amazes me.  Saying yes to the twins renewed our yes to our marriage even though ironically it almost did end in "death do us part" when I was in the hospital sick and bleeding internally.  We said yes to God and He said yes to us, saving us and saving our girls. We are so blessed.

My older children amaze me, too.  They have grown so independent yet loving and compassionate, supporting one another in hard times and celebrating with one another in good times.  I'm not the only one who notices; their teachers and school administrators have noticed as well - they stand apart from their classmates, but in a good way. We are so blessed.

My family amazes me. My mom, my dad, my aunt, my sister - so many people have given so freely to my family this past year, and they continue to do so as we juggle life.  They were the first to teach me love and they are here by our side to help teach our children as well. We are so blessed.

My friends amaze me.  They are there for me no matter what, no matter what I look like, how much spit-up I have in my hair, and even on the days when I don't have time to brush my teeth. (Like today. Oops.) They cook meals for me, they run errands for me, they pray with and for me, and they give the best hugs even if its just a <HUG> on a screen. (Real ones are waaay better, but its the thought that counts.) I am so blessed. 

To think that none of this would have happened if we had said "no" is almost incomprehensible.  I am so incredibly grateful for everything that had to happen to get us to this point. Every single thing. Every.  Single.  Day. We are so blessed.

God sure does work in mysterious ways.  It's unlikely that you will be faced with a crucial decision today, but, at some point, you will be faced with opportunities to choose yes or no in your life.  No matter the risks, no matter the statistics, no matter what the world tells you, no matter how terribly hard it may be, say YES to God. Love Him by letting go of whatever you may be holding onto and live the life He created just for you - you are so blessed. So celebrate today and every day and be on the look out for your next "yes"!

Acts 16:31

And they said, "Believe in the Lord Jesus, and you will be saved, you and your household".

1 John 2:15-17

Do not love the world or the things in the world.  If anyone loves the world, the love of the Father is not in him. For all that is in the world - the desires of the flesh and the desires of the eyes and pride in possessions - is not the Father but is from the world.  and the world is passing away along with its desires, but whoever does the will of God abides forever.

Romans 8:28

And we know that for those who love God all things work together for good, for those who are called according to his purpose.

Inspirational Quote

"Learn to say 'no' to the good so you can say 'yes' to the best." ~ John C. Maxwell

My Prayer:

Dear Heavenly Father, Thank You for giving us the courage to say "yes" to You and Your plan for our lives.  I didn't know I had it in me, but You did - and it was only because I had You and Your strength in my heart so thank You.  I pray for everyone who reads this, that You may give them the courage they may need to say "yes" to You and Your plan for their lives. We are all so blessed, thank You. Help us be living examples of Hope, Faith and Love today, tomorrow, and forever.  In Jesus' name, Amen. 

The Best Gifts

Friends, the thing about "the best gifts" is that they are often something you wanted but kept secret in your heart or didn't see coming at all.  They are unexpected yet at the same time absolute perfection.

My family was recently given a gift that is pretty amazing, but admittedly I may have balked at the packaging.  Okay, fine "balked" may be too soft of a word, let's just say it took a lot of tears, hugs and cookies (sooo many cookies) for me to open it an really look inside.

Before I get into the details of this particular present I want to distinguish something; I'm sharing this with you because I want to share it and I hope it will maybe someway somehow help you reconcile whatever is going on in your world with your faith as I have mine.  Friends, I want to make this very important distinction because if I'm not in someway helping other people than all I'm doing is whining into a megaphone and nobody likes a whiner.  Trust me, I have four.

Friends, our world got shaken up a bit recently with some unforeseen findings in a MRI for our Baby B; Baby B, our Twin-to-Twin-Transfusion Syndrome (TTTS) recipient has been a fighter since she was born just shy of 26 weeks gestation weighing 2 lbs 3 oz.  She survived NEC, several surgeries and several infections.  She permanently lost almost 100% of her hearing in both ears.  Our plan was for Baby B to get cochlear implants in both of her ears so she could be an oral communicator like her siblings.  Life doesn't always go as planned though.

A few months ago I wrote about one of our twins surviving a stroke (spoiler alert, that was Baby A).  Baby A is absolutely amazing; she's such a little love bug who smiles at everyone (well everyone except her Physical Therapists) and loves to hold her sister's hand.  She is 100% perfect, but the stroke did leave her with some challenges, particularly with the left side of her body.

The thing about being a parent is that you never want your kids to experience any discomfort or suffering,;you want them to be happy and comfortable until they die at a ripe old age and join you in heaven where the happily ever after will be continued for eternity.  That is what I wanted for Baby A.  I wanted to take away all of the struggles she would inevitably face in our broken world, but I couldn't, I can't, and so I worried.

I worried that she would feel inferior for not being able to keep up with her siblings. Or her classmates.  Or the fast pace of the world around us.   Her sister's hearing loss I could fix with implants and specialized schooling, but how could I fix the fact that my precious little baby had a stroke? I didn't want her to feel isolated or alone, but I kept it close to my heart because if I brought it to the surface then I would be the one isolating and stigmatizing her and that was the opposite of what I wanted.

Enter the gift.  Friends, as it turns out, our Baby B also survived a stroke - just like her twin sister. Based on the scans of her brain she will likely experience seizures at some point in her life - just like her twin sister.  And she will likely have some degree of cerebral palsy - just like her twin sister.  But then again maybe they won't.  We don't know God's plan.  They have beat the odds every step of the way so far and they have done it together. These girls...they are MIRACLES.

Like I said though, I balked at this gift.  It took me a while to look past what this news means for me (you may understand now why I gorged on desserts) and look at what this news means for THEM.  They are not alone in this!!!  They never have to feel isolated or alone.  They have someone - their sister, their BFF - who knows exactly what struggles they are facing.  They will know (please God, I'm counting on this!) how to comfort one another and how to celebrate the big victories with one another because they will KNOW exactly what it took to do what everyone else around them has taken for granted.  They will know because He knows; He knows exactly what they need.

No, they probably won't live a life free of suffering.  No, I can't fix that, but honestly if I could I wouldn't because there is no growth in easy.  There is no glory in comfortable.  But there can be grace in suffering.  Suffering, when wrapped in love, is how transformation happens.  Suffering, when wrapped in love and received with grace, is one of the very Best Gifts.

I can celebrate this news because God knows how to give the Best Gifts ever (#Jesus).  I can trust His plans for me.  I can trust His plans for all four of my children.  I can trust His plans for you.  I hope you can, too.

Don't worry Friend, trusting doesn't mean you don't have feelings; you are absolutely entitled to have feelings.  Here's a hug <SQUEEZE> and permission to eat anything you want to help you get through whatever you're feeling right now (I recommend chocolate chip-coconut-oatmeal cookies).  Just don't forget - it's rude not to say thank you when you're given a gift so say THANK YOU and give Him all the glory for the incredible gifts He's given you! (Just so we're clear this advice falls under the Best Gift category.  You're welcome.)


James 1:17

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

Proverbs 17:17

A friend loves at all times and a brother [or sister] is born for a time of adversity. 

Inspirational Quote:

"God's dream is that you and I and all of us will realize that we are family, that we are made for togetherness, for goodness, and for compassion." ~ Desmond Tutu

My Prayer:

Dear Heavenly Father,
I thank you from the bottom of my heart for all four of my children.  They are all so different and yet I love them each the same.  You knew them before I did and You know exactly what each of them needs.  Thank you for making them the way You did and thank you for giving them what they need.  Please help me be the very best mother I can be to each of them.  Please help me show them love, teach them to give and receive grace, and allow them the freedom to suffer (just a little bit!) in a supportive and loving environment so that they may flourish and grow. Thank you for Your love, thank you for Your everlasting presence and thank you for Your perfect gifts. In Jesus' name, Amen.

BFFs

We're Fighting...

Friends, my son has a plan.  He really, REALLY, wants "tying" shoes or at the very least flip flops so he took the liberty of planning a trip to the shoe store for us anytime that is convenient as long as its now.  I mean his shoes are SOOO old. (We bought them three weeks ago.)

Virtually everyday I get assaulted with requests, and, depending on how tired he happens to be, sometimes even demands.  What kind of a mother doesn't buy very much needed shoes for her own son? Everyday my response is the same; "I will absolutely buy you tying shoes...when your feet grow and you can prove to me you can actually tie these fancy new shoes."  I have given him a standing offer for lessons and 9 times out of 10 I'm turned down.  He wants what he wants and he wants it now.  Not later.  Later is simply unacceptable.  (No, the apple doesn't fall far from the tree.)

Sometimes he accepts my answer but sometimes he digs his heels in and puts up a fight.  Feet start stomping, tears start streaming, books and/or toys start flying. (He did NOT learn that from me. Okay, fine, maybe he learned that from me.)  Little fists of fury pound on the walls of his own room during time-out.

Then there are the words, words that are designed to cut deep, to hurt as much as he's hurting.  "If you don't buy me new shoes I'll never share my toys with you again"; "If you don't buy me new shoes I'll never love you ever, ever again"; "If you don't buy me new shoes I'll take God away from you." Bless his little heart.

I hold him.  I tell him I'll love him no matter what.  Sometimes that's enough, but sometimes he's not finished being angry with me and that's fine, too.

Friends, today I was that little child who wanted something so badly that I yelled at my Father - my Heavenly Father - when I didn't get what I wanted.  And, boy, did I let Him have it.

There I was in the pediatric operating recovery room holding my precious eight-month old Baby B who was disoriented and hurting from abdominal surgery.  The thing about your kids is that when they are in pain - truly in pain - so are you.  Their pain is your pain.

Alarms were going off left and right, her oxygen levels were dropping and fast.  Her little body squirmed this way and that in my arms and she had the most pitiful moan.  Her eyes were squeezed shut so she couldn't see that I was there.  She is profoundly deaf so my voice did nothing to calm her down.  She had an oxygen mask over her tiny little baby face so she couldn't smell that it was me holding her and she couldn't tolerate being touched.  I was so...helpless.

Amidst all of this one of her many doctors (she had numerous procedures done today) dropped by on his way to the airport; he had read her MRI and the nerve that is required for cochlear implants, which would allow her to finally hear, was not present in the left ear.  Meaning she will never hear out of her left ear.  Her right ear looked more promising, but there was something else...something more significant.  The MRI showed some neurological problems that had been previously undetected, but for answers to our questions we would need to see a neurologist. And then he left on vacation and I was left sitting there holding my wailing baby.

Well, I stomped my feet right up to God's throne and I demanded answers. This. Was. Not. Acceptable.  She was supposed to get cochlear implants next month and finally hear - out of both ears, thank you very much! She was supposed to be an oral communicator and mainstreamed with her peers by first grade.  That was the plan so WTF!?!?

I was angry. I sobbed.  I pounded my fists against the walls of my own heart.  This must be my fault, my fault for sinning; if I hadn't sinned then she wouldn't have been born like this. If I hadn't selfishly wanted to her to survive everything she had survived then she wouldn't have to face such a harrowing future. 

Then there were the words, words that were designed to cut deep, to hurt as much as I was hurting.  What kind of a Father punishes sweet innocent little babies for sins they didn't commit? Why do I even bother loving and serving Him? We are SO fighting!  

I sat there pushing Him away as I tried to hold on tighter to my daughter who was pushing against the pain she was feeling as well.  I can only imagine what the scene looked like from the heavenly perspective; there I was holding a baby who was inconsolable and completely unaware that everything was okay, she was in her mother's loving arms.  And yet there we both were, in His arms, and I was inconsolable and completely unaware that everything is going to be okay.

In the middle of all of this a friend and fellow NICU survivor mom texted me to let me know if I was mad at God I should let Him know.  She said, "The Lord knows your heart, yell at Him if you need to.  Trust in the Lord with all your heart and lean not on your own understanding.  In all ways submit to Him and He will make your paths straight." Proverbs 3:5-6 (Thank you Liz, I really, really needed to hear that!)

So here I am, submitting to Him.

I love you Father, no matter what.  I do not like this, I do not like this one bit, but I am going to lean on Your understanding not my own.  I am angry with You.  There, I said it, I'm angry with You.  But above that I love You and I trust You.  I trust that in all things You work for the good of those who love You and are called to serve according to Your purpose. I am Your servant and even now I want to give You the glory for the goodness that is here now- the goodness in life, in medical interventions, and in friendship.  I also want to give You the glory for the goodness that is yet to come.  

Please hold us and remind us that you will absolutely give her everything she needs in Your perfect timing according to Your perfect plan.  Father, I don't know what else to ask for, but since Your thoughts are higher than my thoughts and Your plans are higher than my plans please bend my will for my daughter toward Your plan for her.  May the works of God be displayed in us.  Thank you, in Jesus' name, Amen.

John 9:2-3
His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."

Inspirational Quote
"Surrender to what is. Let go of what was. Have faith in what will be." ~ Sonia Ricotti

My little fighter....dukes up and ready to go!

Beauty Secrets

Beauty.  It truly is everywhere.  Our journey over the past year with Twin-to-Twin Transfusion Syndrome (TTTS) has really opened my eyes to the beauty in even the darkest days; in two tiny little heartbeats; in two bigger yet still so small smiling faces; in tears; in hugs; in friendship and in prayer.  

First and foremost, thank you so much for walking this path with us, you are such beautiful people! I have really enjoyed sharing this experience with you; so much so that I have decided to keep this blog going even though our battle with TTTS is over.  After all, we now have a much longer road ahead of us raising our four little blessings to become beautiful people who know, recognize, and demonstrate love while living in an imperfect world. Easier said than done, but oh so important!

When I first found out that our precious Baby A may not walk without the support of braces on her legs or that Baby B may not be able to hear fully without the support of cochlear implants my heart was crushed for them - not because they were less perfect (they are absolutely perfect!), but because of how the world will treat them.  Don’t get me wrong, I am very much at peace and content with our circumstances - incredibly grateful even - because I know we are right where God has planned for us to be.  And as imperfect as it may appear on the surface I can trust with my whole heart that what God has planned is more beautiful than what my mind can comprehend.

So they need some support; what is support? It’s just help.  And what is help? It’s compassion.  And what is compassion? It’s love.  So what exactly is there to be upset about? Nothing. 

Essentially, what my kids need is just a little extra love in their lives, but who doesn’t??  We could all use a little extra love and compassion either physically, emotionally or spiritually.  So the next time you see someone struggling with something shower them with love, compassion and acceptance.  Not one of us can survive without those three things.  We weren’t designed to! God is Love.  Out of compassion He has accepted us as His heirs and His children so that means we are love, too. It’s what we’re made up of and its what we were made to do!  

I’m gonna let you in on a little secret; we may live in an imperfect world, but that is exactly what gives us an opportunity to highlight the beauty within the imperfection.  We can do this by shining a light on the things that are beautiful which others have trouble seeing.  Help them open their eyes by being LOVE.

I’m not going to lie, sometimes I flat out don’t feel like loving everyone and everything.   I’m certainly not overly loving when there is a shark under the bed in the middle of the night or when I have a gazillion things to do and places to be and someone can’t quite get with the (aka “my”) program, but I have to remind myself that I was not really put on this earth to sleep my life away, or let myself get so busy with stuff that I don’t put people first; I was put on this earth to love.  That’s it. Its that easy and that hard all at the same time.

So please, for you, for me, for your children, and for mine, LOVE the day away and get up and do it again tomorrow and the next day and the next day...and let’s make the world a more beautiful place!

Love

Compassion

Acceptance 

Ecclesiastes 3:11-12

He has made everything beautiful in its time.  He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.  I know that there is nothing better for people than to be happy and to do good while they live.

Inspirational Quote:

“If you look closely at a tree you’ll notice it’s knots and dead branches, just like our bodies.  What we learn is beauty and imperfection go together wonderfully.” Matthew Fox

My Prayer:

Dear Heavenly Father,Thank You for this beautiful life! I'm so honored You chose me to walk this path.  Please help us spread Your love and open the eyes of those who cannot see the beauty that surrounds us all on so many levels. Send us into the world You created for us so that we may do Your work.  In Jesus' Name, Amen.

Precious Treasures

Glassblowing is an art. Beautiful treasures can be created by manipulating molten glass, but in order for the glass to take the desired shape it must first be exposed to fire, often repeatedly in a short amount of time, to make it soft and yielding. With a careful and intentional orchestration of tugging and pulling masterpieces emerge from the flames.

My family had the privilege of watching an artist blow glass once on a family vacation and it was an incredible experience to witness. I was fascinated because it didn't seem entirely intuitive to me; the color crystals didn't always create the color I expected; the pulling and tugging all had different results; there was carefully orchestrated "breaking" involved.  I guess the most surprising part of it for me was the breaking; I had always considered breaking glass a bad thing, a messy thing, even a potentially dangerous thing. But under the right circumstances broken glass can be beautiful, stunning even. 

Right now our family is like an incomplete sculpture.  Some days it feels like we are thrown in the fire and forgotten about but it is always followed by this incredible tugging and pulling on my heart shaping me and transforming me.  I don't know what we will look like when this is all finished, but then again I'm not the artist.

Nothing about this past year has happened as I expected, but the end result is nothing short of miraculous.  We may still be unfinished, but I know with all of my heart that we are at the hand of a magnificent Artist and crafted out of love. I'm thrilled to report that after 123 days in the the flames (aka the NICU) our family has finally emerged stronger than ever before with the addition of our sixth and final member.  Welcome home Baby A! THANK YOU JESUS!!!

In many ways it feels like we have been at this forever but it also very much feels like a new beginning.  Some quiet time would be nice (figuratively speaking, not literally - with 4 kids 5 and under our house is anything but quiet), but if we get thrown back into the fire again that's okay, I'm not afraid anymore; as long as we choose love above all other emotions and choices we cannot be broken...at least not in a way that wouldn't bring us closer to God - and that my dear friends is a beautiful thing and something to be treasured.

We're thrilled you're home, too, Baby A!

My treasures, my heart, my purpose.

Hebrews 12:29
For our God is a consuming fire.

Colossians 2:2-3
My goal is that they may be encouraged in heart and united in love, so that they may have the full riches of complete understanding in order that they may know the mystery of God, namely, Christ, in whom are hidden all the treasures of wisdom and knowledge.

Isaiah 33:6
He will be the sure foundation for your times, a rich store of salvation and wisdom and knowledge; the fear of the LORD is the key to this treasure.

Inspirational Quote:
"God has entrusted us with His most precious treasure - people.  He asks them to shepherd and mold them into strong disciples, with brave faith and good character. ~ John Orthberg

My Prayer:

Dear Heavenly Father,
You have blessed us beyond what our imaginations were capable of imagining. You saved us when we were on the cusp of being lost forever.  You have loved us faithfully every step never leaving our side.  Through this experience You have brought us - and so many others - closer to You so that we may know You more personally and trust You more fully.  "Thank you" doesn't seem nearly sufficient for what You have given us. I know You must have big plans for these little girls and their siblings otherwise the enemy wouldn't have tried so hard to take them away; the enemy is always lurking when Your work is being done.  Please help us nourish our children with the love and values they will need to continue the good fight. Please protect all of their hearts and give us the courage and strength we will need to step back into the fire when the time is right.  In the meantime please give us peace and quiet to enjoy and cherish these four tiny little blessings.  Thank You.  In Jesus' name, Amen.

Finding Adventures in Detours

Our eldest child, our son, was born right smack dab on our wedding anniversary. That day was such an incredible celebration that we decided the only way we could top the next year was to do something big for all of us. That "something big" was a trip to Russia. 

You might think we were crazy to take a 12 month old on such a trip but we are always up for new experiences and adventure. We were also very prepared. To mitigate the risk of unpleasant layovers or delays and being trapped in an airport with a baby we drove 4 hours to Chicago. We carefully selected an international flight that would align well with nap times. We made arrangements for a car service to pick us (and our 10 bags. Yes, 10 bags. No, I'm not joking.) up at the airport and drive us to the port town outside of London where we would embark on our cruise the next day. We prepaid all of our excursions eliminating the need for cash. We called our credit cards with the dates and locations of our cruise ports. We had thought of everything.

Everything went perfectly according to our plan. Well, until it didn't...when we arrived at the hotel after several days of traveling with a tiny companion there was a message waiting for us with our keys - the cruise ship had caught on fire and was stuck at sea. The trip was cancelled. We were screwed; we had no money, we had no access to our credit cards, we couldn't call our credit cards without paying to use the phone, our phones didn't work internationally and Gmail was down (when does that ever happen??) so we had no way of notifying anyone who might be able to help us of our predicament. We had no food (other than pumped breast milk) and no return flight for another two weeks. Oh, and we had a baby. And 10 bags.

We had no idea where we were going to sleep, where our next meal would come from or what we would do, but guess what? We weren't alone - there were hundreds of people in our same predicament. Maybe not traveling with a baby, but still the same. 

Some of them immediately became victims and those victims became angry and those angry victims wanted justice; they grouped together and plotted about how they would contact the local media and tell the whole world how awful it was to be them. I've got to say it was pretty awful to be them; they were so busy getting their revenge that they didn't stop to think about other ways they could be spending their vacation. 

Some people were so worried about how they were going to eat that they were too worried to eat when food was provided. Some people were calm (I'd say we fell into this category) and some people were...wait for it...happy. Yes, their plans were shot to hell but they still found a way to be happy and if they could find a way to be happy then so could we!

We negotiated an alternative cruise to the Mediterranean five days later and in the meantime bounced around hotels and cities and even countries courtesy of the cruise line.  We may not have had any money or any say in where we were going but we could certainly control how we spend those "thought" hours and use them to figure out how we could make the best of a less than ideal situation. 

Fortunately the car service we used to get from the airport to our hotel took a risk on us that we would work out payment so every day we took a new unexpected adventure. We even told the driver at one point to just surprise us and take us some place new and unique - and he did - so we saw some really great places and got to experience some really great food...all because we threw our doubts, fears and reservations to the wind. Or out to sea.

Our perfectly planned nap schedule was shot, our clothes were not weather appropriate, we lost all but one precious binkie (if you have small children you know how serious this is), we were tired (and tired or carrying a mountain of bags) but with positive attitudes and determination we turned this unexpected cancellation into a detour and the detour into an adventure. Eventually we made it to Russia...just a year later. 

Not Russia

Definitely not Russia

Finally Russia!

We recently encountered another unexpected detour in life that I know will certainly call us to have that same positive attitude and determination; last week we were absolutely stunned by the news that our Baby B was completely and permanently deaf in both ears.   

Although it is impossible to tell what caused this, it was likely the antibiotics she needed after getting E. Coli infections in her incision after both of her surgeries for NEC.  It would be easy to allow myself to be angry with the hospital and doctors for the infections, but it would be wrong.  It would be easy to allow myself to be angry with God for taking away her hearing after everything else she had been through, but that would also be wrong.  Two wrongs don't make a right.

It has been nearly a week now and although I still have my moments of emotion, I've discovered through leaning on God's understanding rather than my own that everything happens for a reason.  I don't know why this happened, but He does.  He gave us these precious babies just as He gave us our two older treasures.  Each child was chosen for us.  Each child was given to us and each child is a blessing.  

What has really brought me peace is recognizing that He also gave us to them.  There was something He saw in us that made us a perfect match for them and He has given us everything we need to provide for each of them individually and collectively.  He knows we will do everything possible to give them the best opportunities.  He knows we have an incredible support system with a loving grandmother and great aunt among others.  He knows she will not walk this alone.  He knows we will turn this new path in our lives into a detour and this detour into an adventure just as we know He will give us everything we need in order to do so.  She is a special girl but not because of her special needs - she is an over comer. She will overcome this setback just as she has so many (far too many for such a tiny little baby IMO).  She will learn to speak and share her story someday - this is just a detour in her path not the end of the road.

Our precious Baby B - we will do whatever it takes to help you get to "Russia"

This is the first time I have publicly shared this information so if this is the first time you're hearing of this please do not offer your condolences - it is what I thought I wanted to hear but I don't; they only weigh us down and if I've learned anything it is the importance of packing light.  Instead, please pray for our family and wish us the best of luck on this new adventure!

Matthew 11:28-30

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke us easy and my burden is light.

Inspirational Quote:

"Character cannot be developed in ease and quiet.  Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. ~ Helen Keller

My Prayer:

Dear Heavenly Father,

My heart broke for my little girl and yet you hold the pieces in your very capable hands; I trust you with the pieces of my heart.  I trust you with the plans you have for my family.  I trust good to come out of this pain and discomfort.  Please help me keep my focus on you and of the good that will come out of this.  Please help me see the blessings you have given us and those which are yet to come and please don't let me get distracted by the things that do not matter.  Father, I know that what matters is that my children - all of them - grow up surrounded by love; love is something you feel not hear so please help our Baby B feel your love and mine.  I pray that she is a good candidate for cochlear implants so that she may one day hear my voice and the voices of her father, her brother and her sisters.  More importantly I pray that she hears your voice in her heart.

I pray that you guide our choices in her care and development.  I pray that she will not be labeled and if she is, I pray that she knows she is more than a label.  I pray for her brother and sisters that they may all love one another equally as we do and in the process be more empathetic to the needs of those around them in any and all situations. Thank you for this detour; I may not be able to see where we are going, but I trust it will not only be great when we get there but great getting there as well. In Jesus' name, Amen.

Home Stretch

God is good! God is very, very good!  I have a baby in my arms. On my couch.  At home. Did ya catch that? At home!!!

Baby B, our TTTS recipient, came home after 110 days in the NICU weighing a whopping 7 lbs 10 oz (birth weight was 2 lbs 3 oz)!!!  Jesus kept her safe through NEC, two surgeries and all of the other hurdles she's overcome just by being a micro preemie.  Pretty amazing stuff if you ask me.

She isn't the only one familiar with the OR though; her sister, Baby A, decided she wanted a really cool NICU battle scar, too, so she developed pulmonary hypertension (high blood pressure in her lungs) resulting from a large opening in her heart (patent ductus arteriosus) which needed to be surgically closed.  The hypertension developed quickly and she didn't love the medication much.  At fist we were told she would need to be transported to a different hospital within 24 hours.   Fortunately they were able to find an available surgeon (apparently they get called into all day emergency surgeries a lot) and an OR that met our criteria (apparently they have to be kept at a higher temperature for preemies) a day later so she was able to have the surgery at our hospital.

Having two kids in two different hospitals and two at home probably would have been enough to push this momma over the edge.  It was hard.  Really, really hard.  On top of it all I was sick with a nasty upper respiratory infection and the thing about having a baby with lung problems is that you can't be around them with upper respiratory infections.  There were definitely some moments during this that I was really mad at God for not letting me see my girls.  (That's right, it was His fault.)  It felt like He didn't really love me, I mean if He did, then why would He let me get so sick so I couldn't be with my baby when she was so sick?  Fortunately He didn't hold a grudge and changed my heart from focusing on the love I wasn't feeling to how much I knew He loved my little Baby A.  She is His baby, too, and He loves her more than I ever could.  Focusing on His love for her brought so much peace.  And you wanna know what?  The trouble we had locating a surgeon and an operating room gave me the extra day I needed to get better and see my precious baby before her surgery.  She is recovering quickly so hopefully she will be able to come home, too, very soon.  Yes, God is good. :)

Here are just a few of the ways God has been good to us since my last post:

Baby A recovering beautifully from surgery - without O2 support!!! 

Baby A doesn't look too thrilled about sharing. Such is life when you're a twin sweet thing. 

....And this is why I have to dress in layers. #drool #soworthit

Life at home keeps going!

....and going...(Yuck! Snake worm - this is why God gave me 3 girls!)

"Is she for real? Can I kiss her?" ~ Big brother

"Nose." ~ Big sister

Very happy to be home!

Colossians 3:1-2

If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God.  Set your minds on things that are above, not on things that are on earth.

Psalm 30:11-12

You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness, that my glory may sing your praise and not be silent. O Lord my God, I will give thanks to you forever!

Inspirational Quote:

"Find a place inside where there's joy, and the joy will burn out the pain." ~ Joseph Campbell

My Prayer:

Thank you Jesus, thank you Jesus, thank you Jesus!  Thank you for your never ending love; thank you for your forgiveness; thank you for your presence; thank you for your perfect timing; thank you for your bountiful blessings.  Thank you my Lord Jesus for helping Baby A get the surgery she needed and for helping me get better all according to your perfect plan.  Thank you for the doctors and nurses who have taken such excellent care of our girls helping them grow and develop so that they may come home.  Please help Baby B continue to thrive at home, please help her brother and sister adjust quickly and please help Baby A continue to make progress so she can come home as well.  I also ask that you strengthen the other families we have met along the way with babies fighting just as hard as ours.  We know you love them as you love our children.  Thank you, in your name Amen. 

Mary's Garden

Five years ago when my husband and I were expecting our first child (wow, a LOT has happened in five short years!), we took a trip to the Mediterranean and spent some time in Turkey.  It was one of those packaged tours where you follow a pre-determined itinerary.  I was looking forward to exploring the ancient city of Ephesus but on the way we made a short stop at the House of the Virgin Mary.  At the time I was not a Christian - well I celebrated Christian holidays, but I certainly didn't know Mary from Eve.

To be honest I didn't know what to make of Mary's home.  From my perspective it was just tiny, old, dark, and eerily quiet given the number of people who were there.  It seemed like everyone who was there was there because they were on a spiritual pilgrimage and there I was plopped in the middle of it somewhat disoriented and out of place.  It's not that I felt unwelcome, I just didn't know how to fully appreciate the opportunity.

The tour allowed for plenty of time to worship and pray and since I didn't really know how to do either I found myself drawn to her garden.  Compelled may be a better word.  There was just something about her garden that pulled me in in a way that I can't quite describe.  In this garden (I use the word "garden" loosely here because there really was only one flower at the time) there was a rose.  It was an absolutely stunning rose, captivatingly beautiful.  What made it spectacular was that there it was standing tall on the side of a mountain; a rough jagged mountain close to the coastal line with strong winds.  We were also in the midst of a season change with temperatures warm one minute and very cool the next yet there was, this delicate rose standing tall against a stone wall, seemingly untouchable by the winds, the sun, and the coastal weather.

I probably spent more time mesmerized by this rose than I did exploring any other part of the grounds.  In fact, I can remember being pulled back several times over the course of our visit, just staring in absolute awe of this rose.  Even though I really had no idea how to pray, I made a wish.  I wished for a family and I wished for happiness - that's it, just those two things.  That is all I wanted - lots of kids running around and a happy home.

Fast forward 5 1/2 years and here we are with four amazing children and I'd say that Mary heard my wish that day.  Our double Twin-to-Twin Transfusion Syndrome (TTTS) survivors were actually given names meaning "Happiness" and "Flower" - just like Mary's rose they are delicate but so amazingly strong.

Yet just like Mary's rose there are winds threatening to pull them down; winds threatening to take away our "Happiness".  One of our girls, and it doesn't matter which one, was recently diagnosed with a significant brain injury in the right hemisphere of her brain, which was the result of an in utero stroke.  I've held off on writing about this up until now mostly because I didn't understand how to interpret my own feelings.  I still don't fully know how to put this in words so please bear with me.

The news was shocking and a bit overwhelming and I kept waiting for the wave of emotion to hit like a tsunami...but nothing happened.  There was no hysteria, there were no waterworks, there was no grieving. I keep asking myself what is wrong with me that I'm not crying my eyes out over this news.

I've spent a lot of time thinking about this and I realized that the reason I haven't had much of a reaction is because it simply doesn't matter.  Let me repeat: It. Does. Not Matter.  I love her and nothing is going to change that fact.  Nothing about what the future might bring will scare me away; not Cerebral Palsy, not seizures, not learning disabilities, not any of the other million what-ifs our future may hold.

We love her and will do everything in our power to give her everything that she needs to stand up tall against the winds of life and all with unconditional love.  If anything when I look at her I look at her in awe, like I did that flower in Mary's garden, just captivated by her strength and beauty.  Plus Mary, who has become my go-to girl for prayer, is literally the Mother of God and she is quite the gardener so I trust her with our "Flower" and our "Happiness".

Hail Mary full of Grace.  Our Lord is with thee.  Blessed art thou among women, and blessed is the fruit of thy womb, Jesus.  Holy, Mary, Mother of God, pray for us sinners, now and at the hour of our death. Amen.

Inspirational Quote:

"Unconditional love really exists in each of us.  It is part of our deep inner being. It is not so much an active emotion as a state of being. It's not 'I love you' for this or that reason, not 'I love you if you love me.' It's love for no reason, love without an object." ~ Ram Dass 

My Prayer:

Oh Mary sweet Mary, from one mother to another I thank you for hearing my "wish".  My children are my treasure just as our Lord Jesus was yours.  Please watch over all of my children and help them grow and learn and develop.  Please help our little angel baby make progress so that she may play and keep up with her brother and her sisters.  Please pray for patience for all of us so that we can allow her the time and support she needs to learn and master new skills.  Please soften the hearts of the children and teachers she will grow up with so that they can see her for the beautiful rose that she is, and not focus on the areas where she may be lacking.  Please help her feel valued and loved unconditionally.  Thank you for your love, prayer and protection. Amen.

Baby Steps

Our girls just celebrated their three-month birthday!!! We are finally in the home stretch, but likely have another month ahead of us until both girls are home from the NICU.  We are very fortunate that Baby B's second surgery went well and both girls are stable.

Right now we are just waiting for them to learn to eat; up until now they have been fed through a tube in their nose and since they haven't been drinking amniotic fluid for quite some time now they need to learn to suck, swallow and breath (in that order).  It seems so simple, but watching my girls learn this new skill it is clear to me that it is not an easy task.  Some days they do really well and take the whole bottle in 10 minutes some days they don't quite have the stamina to empty their bottles and some days they choke.  Regardless of the end result I just love watching them try and I cheer them on as they tackle this huge obstacle.  When they take a full bottle I'm thrilled and so proud.  When they struggle I'm proud of their effort and when they choke I hold them so they can compose themselves and try again.  The nice thing about eating every three hours is that they always have another chance to try and there will always be someone there cheering them on and patiently helping them grow.

I've come to realize that this is probably how God views us - we are his children after all.  He asks us to love one another - a seemingly simple task, yet SO difficult.  When we are loving, kind and obedient He is thrilled; when we struggle He is there to help us; when we choke He holds us, offers forgiveness and gives us another opportunity to try again.  Every day is a new opportunity.  I know I've certainly struggled these past few months and choked more times than I care to admit...Like daily and sometimes hourly.

I start the day off with the intention of being loving and kind and then I get overwhelmed or worn down.  Having two kids at home and two kids in the hospital, medical bills out the wazzou, laundry x 6 people, meals to cook, dishes to do, diapers and groceries to buy, field trips to chaperone, temper tantrums to calm (sometimes my own), vomit to mop up, sibling arguments to mediate makes keeping my focus on being loving and kind so freaking difficult.  Its easy to forget that is what we are called to do in that moment...which is to love. Since love is a verb this requires deliberate action...not snappy reactions, which happen to be my specialty.

Its easy to forget that trials like these are what shapes our character.  Its easy to feel unnoticed and under appreciated.  Its easy to choke.  But just as I'm there cheering on my girls through the good feedings and the bad, our Heavenly Father is there cheering us on through our good choices and our bad ones.

My girls have no concept that if they can master the the bottle then they get to go home where there are really good things in store for them. Like a big brother and sister who can't wait to meet them.  Like unsupervised snuggle-time.  Like unconditional love and protection from the people who want to give it to them the most.  If we can give our girls a new take on life after the NICU then what could God possibly have in store for us for mastering the art of loving even when its difficult?  I think really great things. :)

Okay, okay, okay, I've given you my two-cents worth now here is what you're probably waiting for:

Matthew 7:11

If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!

Hebrews 12:1

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us. 


Inspirational Quote:

"Feelings are indicators, not dictators.  They can indicate where your heart is in the moment, but that doesn't mean they have the right to dictate your behavior and boss you around.  You are more than the sum of your total feelings and perfectly capable of that little gift...called self control." ~ Lysa TerKeurst

My Prayer:

Dear Heavenly Father,The more I think about it the more I am utterly amazed at these gifts You have given us and how perfect Your timing was saving all of us.  I want to be patient and loving and kind as You have asked of me but somedays I struggle.  Some days I choke and don't feel worthy, but I know if I turn I will see all the ways You love me.  If I listen closely I can hear the cloud of witnesses cheering me on just as I am cheering on those around me.  Thank You.  Please help me to pause, turn to you to regroup and try again when my focus strays.  Please help me choose love over anger, kindness over cruelty, and compassion over resentment.  Please shape me into the person You created me to be, even if it is in baby steps. 

Please give our girls the strength and coordination to master bottle feeding so that they may finally come home.  Please help each four of my children to master each phase of their respective lives and do so with a loving hand and heart so that they, too, can grow into their full potential.  Thank You for these incredible blessings and thank You for these valuable lessons.  I pray that You will also be with the other families affected by TTTS in the past, the present and the future; they truly are some of the strongest people I have ever encountered, but I ask that You continue to strengthen them as well as their beloved babies here on earth and those in heaven with You. I love You and I trust You, In Jesus' name Amen. 

I'm With the Band

Our little Twin-to-Twin Transfusion Syndrome (TTTS) survivors are really rocking it in the NICU! Eight weeks in and I have nothing but good news to report:

• Both babies have more than DOUBLED their weight! Baby A started at 1 lb 12 oz and is now 4 lbs 1 oz.  Baby B started at 2 lbs 3 oz and is now 5 lbs 2 oz (and outgrew preemie clothes btw)
• Oh, yeah, they are in clothes now!
• And in open air cribs!
• Baby B's infection in her incision is clearing up beautifully
• Both babies are weaning off their oxygen support
• Both babies are regulating their body temperatures really well
• Both babies are interacting with us during their care times
• We can pick them up by ourselves like real parents without two nurses facilitating all transfers
• Best of all...I got to hold them both at the same time yesterday, which was the first time we were all reunited in 60 days!  Thank you Jesus!!!

These little girls have really stolen the show and I've just gotten to stand back and watch them hit the high notes. We are so grateful for these tiny miracles and for all of you out there who are praying for our family.  Your prayers are being heard and answered so thank you, thank you, thank you!  I'm keeping it short today because life is crazy busy, but here are our little rockstars who want to thank you, too!

 Big brother and big sister deserve a shout out, too, for being really great about sharing mom and dad...and for making me laugh by being ultra silly!

Colossians 3:15
Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.  

Psalms 107:1
O give thanks to the LORD, for he is good; for his mercy endures forever. 

Inspirational Quote: 

"The more you praise and celebrate your life, the more there is in life to celebrate." ~ Oprah Winfrey 

My Prayer: 

Dear Heavenly Father, You have gotten us through so much these past few months that my heart feels like it could burst from all of Your love.  Thank You for being there every step of the way and thank You for giving us a reason to pause and celebrate all of the good things.  Let my words of thanks be my song for you.  

I know we are only halfway there but I also know You will continue to sustain us and give us opportunities to praise and give thanks. I am so grateful for this experience and all of the wonderful friends you have given us - both old and new, the near and the far, the believers and the nonbelievers.  May You shower your blessings on them all as You have blessed our family.  

I also pray for the many families who are currently battling TTTS and especially for those who have lost their babies to this devastating disease.  May You flood them with peace and send their little angels down to hug them.  Help them trust in Your plan. Thank You, Amen.