Friday, May 31, 2013

A Year Ago Today

A year ago today we got to bring home our precious baby girl.  What had started out on May 3rd 2012 as a brief stint of breathing tubes, supplemental oxygen, configuring the perfect calorie concentration, and a possible (and later confirmed) diagnosis of Jeune's syndrome had turned just 4 weeks later into two first time parents bringing their baby girl home with nothing more than a car seat. 

We were so excited to bring home our previous baby girl to the nursery we had prepared for her. Throughout the entire pregnancy and her NICU stay, Derrick and I had been preparing our lives and our hearts to become Mama and Daddy to Aubree, and she was finally coming home with us. No more driving home night after late night from the NICU with an empty carseat.

It was honestly hard to leave the NICU behind in a way because the group of doctors, nurses, and therapists there had become like family in four short weeks. They had taken care of our daughter at such a critical time in the most caring and skilled way possible, had patiently explained every step in the NICU to us, and had supported us throughout the roller coaster of progress and emotions that is the NICU. Having literally travelled to some of the best hospitals all over the country, we have yet to experience anything like the level of care and dedication that we did at the Willow Creek NICU. We thank God continually for Willow Creek NICU!

That afternoon on May 31st, we signed discharge paperwork, buckled her into her carseat, and Daddy carried her as we went down the elevator where the car awaited us. daddy drove home while Aubree and I sat in the back. It was very surreal to leave the hospital with our girl having no monitor or support whatsoever.

We arrived home to balloons and welcome signs. Once we arrived home, we took Aubree on a tour of the house with extra time spent in her nursery. God had blessed us with being able to take our little jewel home, and we were so thankful!

With it being such a big day, all three of us were pretty exhausted so we took a family nap with Aubree in the bassinet beside us in the bed. Only the peace of God could explain us being able to fall so hard and fast asleep with no monitor attached to Aubree or eyes actively watching her for the first time in four weeks. We had trusted God with Aubree's life from the beginning (which He worked miracles in from the start), and we had to keep trusting Him for her well being.

Since Aubree came home, our walls have never been filled with more love, joy, excitement, laughter, and sweet baby chatter and giggles. Daddy has commented on the deafening silence and emptiness in our home without Aubree in it. I can only imagine and know it must be so very hard on him when he must be there all alone without "his girls," as he calls me and Aubree.

A year later, we find ourselves back in a hospital room so very far from home. While the length of stay Aubree's current hospitalization has far exceeded four weeks in the NICU (previously her longest hospital stay), we remember the sweet joy of taking our daughter home from the hospital and look forward to that day. While we know it will not be soon, God already knows when we will be taking Aubree home from CHOP. We look forward to her homecoming in God's timing, just like we did a year ago.

Monday, May 20, 2013

Mommy & Daddy's Anniversary at CHOP

Seven years ago today, I married the absolute love of my life.  Derrick is genuinely the sweetest, funniest, warmest, most infectiously happy person I have ever met.  We seriously have so much fun together no matter what we are doing.  I still find myself rolling laughing at him at the silliest things, but I genuinely think he is still hilarious.  Without a doubt, I hit the husband jackpot, and I remind him of that frequently! He's the best!

God really knew what He was doing when He paired us together.  While we have completely the same viewpoint on the big stuff (God, money, politics, raising Aubree, etc.), we are so different in so many ways, and it makes the best balance.  We are definitely never bored with each other!  He is so organized in his thought processes, and my mind can run 90 miles an hour on a million different things at once.  He laughs and says he can see when my wheels are turning in my mind.  He cleans one room of the house at time until they are all done while I do tiny bits throughout the house and get them closer to clean.  He is an early bird, and I am a night owl.  He is a planner, and I am very spontaneous.  We definitely balance each other! 

After almost 6 years of marriage, we just thought we were happy.  Then, we got the icing on the cake when Aubree came into our lives. She was the missing piece that we didn't know was missing!  Our sweet girl is a balance of us, too!  Aubree looks just like her Daddy, and acts just like her Mama!  Oh my! He is the "fun" one with Aubree that can always make her laugh and giggle and smile like crazy, and I am the comforter who can always get her to sleep or calmed down.  With all of Aubree's medical things, he deals with all of the insurance, medical bills, and such, and I worry about appointments, therapies, and supplies.  He is seriously the very best Daddy to Aubree, and I love him even more than I thought I could by seeing him love our daughter with all of his heart. 

In the midst of all of the joy we have experienced with Aubree, some of the most difficult times of our life together have been watching our sweet baby fight and struggle from a respiratory standpoint.  During these times, we have clung close to one another.  Throughout all of these difficult times, from the NICU, to the hospital stays for surgeries and illness, Derrick has been my rock.  The roller coaster of these experiences with so many highs and lows are so very excruciating, it is difficult for me to express in words.  When in the midst of a low point when Aubree seems to be doing worse, it sometimes feels like it is breaking me irreparably.  But Derrick always comforts me, consoles me, and points me right back to God who knows what the future holds for Aubree regardless of whether we do or not.  When I occasionally have slipped into darkest of places trying to deal with all of the unknowns that are before us, he always points me back to the light and hope in Jesus Christ.  I am so thankful for him loving me in spite of the bawling, broken mess that sometimes comes out and doing everything he can to help put the pieces of me back together.  Thank you Lord for a spiritual leader who You use to bring me always back to You, where all hope is found!

One day, a very special young man will have EXTREMELY big shoes to fill to capture the heart of our sweet Aubree because her Daddy already has her heart and takes such sweet care of it.  I can only pray that she finds a man one day who is as good to her as her Daddy is to me.  A man who leads his family to the cross of Christ, loves his family unconditionally, and is the most fun, handsome man on the planet!

Happy 7th Anniversary, Babe!  I love you and love being by your side as we live life together.  Everyone, please pray for me as Derrick must return to work for few days each week starting tomorrow, and I have never had to do any of this without him.  Please pray for Derrick also because this will be his first time to ever be away from Aubree since she was still in the womb when I was a few months pregnant.  He in no way wants to leave his girls, but it must be done.  God give us strength through the times of separation.  Most of all, Lord, continue to work in Aubree's health and life and help us to make the best decisions for her. 

Friday, May 3, 2013

Happy 1st Birthday, Aubree!

A year ago today, Derrick and I anxiously awaited meeting the sweet baby girl whom we had grown to love over the last nine months.  Though she was already in existence and very much alive, we couldn't wait to meet her face-to-face.  With the majority of both of our families living hours away, it was a blessing for a C-section for breech to be scheduled.  This meant all of our family members and friends could be there for Aubree's birth without travel time interfering.  26 people were in the waiting room anticipating the birth of Aubree while Derrick and I were back in the OR. 

Our sweet girl just a few minutes old (and the first time I got to see her!)

That afternoon, our sweet girl came out silent, but kicking.  While she was beautiful in our eyes, she looked a terrible gray color and was immediately receiving help from NICU staff that was present.  Another blessing from the C-section was that NICU staff were already present per hospital policy.  God knew what he was doing making this baby breech!  Instead of Derrick carrying Aubree out in his arms as was the plan, she was wheeled out in an isolet with our family and friends only getting a glimpse of Aubree on her way to the NICU. 
Our sweet Aubree, less than a day old with a breathing tube in.  She didn't have to keep it very long. 
So beautiful and such a fighter even then!
We will be forever grateful for the excellent, loving care Aubree received in the Willow Creek NICU.  While it was extremely unexpected for Aubree to need such assistance after birth, God took care of Aubree and held us up in such a trying time.  Also, having literally taken her to other places in the state and across the country, we know Aubree could not have gotten better care anywhere else.  Thank you Willow Creek NICU for all you did and have done for us and our girl!

Sweet sign Derrick's mom (goes by Lady to the grandkids) made to help celebrate Aubree's birthday.
While there have been surgeries, trying medical times, and so many other hard times throughout the last year, none of those things pale in comparison to the love, joy, and happiness we have experienced since Aubree was born.  Aubree is the bright light in our lives we didn't know we were missing.  Made in His image, Aubree has shown us even more glimpses of the joy of the Lord.  Also, we have an even greater understanding (though still not a full understanding) of how much our Heavenly Father loves us and Aubree.  We love our precious daughter more than we ever thought it possible to love another person, and God loves her even more than we do!  Hard to even fathom because we love her so very much! 

Sleeping beauty in her birthday bow and bib
Also, having Aubree has really brought to light the great sacrifice God made on our behalf of sacrificing His Son Jesus Christ so that the debt of our sins could be paid so that we might spend eternity in Heaven with Him.  What great love God must have for us to sacrifice His Son so that we might become sons and daughters? I cannot fully comprehend this because I cannot imagine having to turn my back on Aubree and for her to die the most painful of deaths so that others might have eternal life.  Thank you Lord for giving us the hope of eternal life by trusting and believing in Jesus Christ! 
Still smiling!

Aubree has also brought so many people to the feet of Jesus, crying out to Him to heal and comfort this sweet baby.  So many prayer warriors and some praying for the first time in a while have come alongside us and prayed on behalf of our sweet girl.  And, what glory God gets when she has improvement, shows signs of healing, or even remains stable.  Our great God is definitely in control, yet hears and answers the prayers of His people. 
While it has been the hardest, this has truly been the very best year of our life!  It has been so much greater than we could have ever anticipated!  We are so thankful for everyday that God has given us with Aubree and look forward to each additional day the Lord gives us with her.  I know that this is not the typical 1st birthday post with milestones and statistics (which are great to record and celebrate), those are not the things that came to mind when thinking of the blessing our sweet Aubree has been to us over the past year.  We are most thankful for who she is, the way God created her before we even knew she would be coming, and the sweet spirit He instilled in our girl.  While milestones and places on growth charts are great, we don't love Aubree for what she can do or how she appears physically.  We love our precious jewel for who she is, our precious daughter made perfectly in the image of a King! 
Banner made by Derrick's mom (goes by Lady to the grandkids). 
So sweet that she worked so hard to help make Aubree's birthday special in the hospital.