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.