Monday, July 30, 2018

Half a Year Away

6 months.
26 weeks.
182 days.
Half a year...

On January 29th I woke up having contractions 3-4 minutes apart.  I was scared.  This wasn't supposed to be happening yet!  I was only 30 weeks along.  Samuel was already being faced with so many medical complications, the last thing he needed was to come early.  The doctors had warned me that this could happen.  In fact, they would have been surprised if Samuel didn't come early because of how much extra fluid was surrounding Samuel.  At 30 weeks my belly was already measuring full-term (40+) because of severe polyhydramnios.  This almost seemed inevitable...but we hoped it wouldn't happen for several more weeks at least.  We had been praying for God to let Samuel stay put until the appointed time...surely this wasn't it!

For the first part of the morning I tried hard to ignore what was happening.  I chugged water and laid in bed, not daring to move.  Finally I called my doctor, hoping (unrealistically) for reassurance that it was nothing to worry about.  She wanted me to come in right away, just in case.  20 minutes later Seth and I were in the car, driving to the hospital.

I never would have imagined that day as we drove away from our house that 6 months later we still would not have been back home.
I never would have thought that just 8 hours later I would be flown by helicopter to a hospital 3 hours away, and 6 months later still would not have been back to our home town.
It's been 6 months since we've seen our dog.
6 months since we last had dinner at my family's house.
6 months since we walked around our neighborhood.
6 months since we fellowshipped with our church family.
6 months since I last cooked a meal.
6 months since we slept in our own bed.
6 months of spending anywhere from 12-24 hours inside of hospitals - Every. Single. Day.

It's exhausting, and I can't begin to describe how homesick we are...There's just something about leaving so abruptly, not realizing it's going to be your last time home for 6+ months, that just makes being away that much harder.
When we left our house that morning? I still had clothes in the washer. I had breakfast dishes in the sink. Our house was not clean. Samuel's nursery was not set up. I grabbed my phone charger thinking it was the most long-term thing I might need that day...
That night we were supposed to go to someone's house for dinner. Within the next 2 weeks we were supposed to have all 3 of our baby showers. I was supposed to have a maternity photo shoot not long after. But we weren't home for any of those things.

6 months is a long time to be gone from home, and so much has happened while we've been gone. My grandpa passed away in April. My younger sister and brother-in-law graduated from college in May. We missed the wedding of some dear friends in June.  My older sister had a baby just a few weeks ago.  We have missed out on mourning and celebrating with family and friends.  Life continues to march on back home, while for us it seems that time is standing still.  I can't believe it is almost August...When we left home the temperature was in the 20s that morning!  We completely missed out on Spring (one of my favorite seasons in NWA), and we won't be home before the end of Summer.

Our hearts ache for home.  It hasn't been easy.  Am I grateful that Samuel is still here with us?  Absolutely!  God has so graciously granted our son life!  Something that many of the doctors didn't expect to last long.  We are beyond grateful for God's grace and the gift of life!
But that doesn't make it easy being 1,200 miles away from family.
The only thing that helps?  The only way we have gotten through?  Resting in the sweet promises of God.  Because, over the past 6 months, these sweet promises have become timeless truths.  We have seen them play out over and over again as God continually proves to us that He never fails.
Here are just a few of the truths that have helped me get through the first half of this year.  I pray that God will use these to encourage you wherever you may be today!

Have you not known?
Have you not heard?
The Lord is the everlasting God, the Creator of the ends of the earth.
He does not faint or grow weary;
His understanding is unsearchable.
He gives power to the faint, and to him who has no might He increases strength.
Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
Isaiah 40:28-31

You keep him in perfect peace whose mind is stayed on You, because he trusts in You.
Trust in the Lord forever, for the Lord God is an everlasting rock.
The path of the righteous is level; You make level the way of the righteous.
In the path of your judgments, O Lord, we wait for You; Your name and remembrance are the desire of our soul.
My soul yearns for You in the night; my spirit within me earnestly seeks You.
Isaiah 26:3-4, 7-9a

The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quiet you by His love; He will exult over you with loud singing.
Zephaniah 3:17

I give You thanks, O Lord, with my whole heart; before the gods I sing Your praise;
I bow down toward Your holy temple and give thanks to Your name for Your steadfast love and Your faithfulness, for You have exalted above all things Your name and Your word.
On the day I called, You answered me; my strength of soul You increased. The Lord will fulfill His purpose for me; Your steadfast love, O Lord, endures forever. Do not forsake the work of Your hands.
Psalm 138:1-3, 8

Hear, O Lord, and be merciful to me!
O Lord, be my helper!
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 you You forever.
Psalm 30:10-12

Something else that has helped to get us through?  The fact that God has graciously allowed us to walk this journey together as a family from day one!  Seth's workplace has allowed him to work remotely this whole time, so the 3 of us have not been separated since we left home in January!  We are so grateful!  In honor of our time together over the past 6 months, enjoy some of our family pictures from that time!

January 29th
The day we went into the hospital as a precaution, hoping that we would be home later that afternoon with Samuel still safely inside.  Little did we know that we would end up in a hospital 3 hours from home that night, Samuel would arrive one month later, and we wouldn't see our home for 6+ months.

February 27th
Our very first picture as a family of 3!  Although Seth had spent the entire day with Samuel, I had just arrived at the Children's Hospital after being discharged from my own month-long hospital stay 12 hours after giving birth!

March 11th
The day after Samuel's heart stopped beating, and we almost lost him.  He had to lay sideways in his bed for 10 days while he was on the oscillator, and we prayed that God would allow his lungs to recover from what happened.

March 20th
The first time I got to hold Samuel again, 10 days after we almost lost him.


March 23rd
Right after we had met with our doctors and palliative care.  There were a lot of tears that day.  They didn't have much hope for Samuel and weren't sure that they could offer him a life-saving heart surgery.  If we had simply said the word they would have switched gears from keeping Samuel alive to keeping him comfortable as he passed.  This meeting led into a long weekend when we ultimately ended up making the decision to transfer Samuel to Delaware.

March 27th
Samuel's 1-month birthday! We had no idea that we would be flying out to Delaware the next morning!

March 28th
2 hours after finding out they were flying Samuel to Delaware that day, Samuel was already loaded up in the transport box!
March 30th
A few days after we all arrived in Delaware!  They were allowing Samuel's body time to rest and adjust after the trauma of being transported.

April 5th
The afternoon we found out that Samuel would be having open heart surgery the next morning - less than a 24-hour notice.  After talking to the surgeon and signing the papers, Seth and I cried so many tears.  But God provided peace as we spent time with our precious boy.

April 6th
Samuel's actual due date!  This was minutes before they took Samuel off to the OR for his first open heart surgery.

April 20th
Right before sending Samuel off for his 2nd surgery - to get a g-tube and nissen.  We had no idea that after this surgery Samuel wouldn't be able to eat for almost 3 months, and he would leave all of the doctors stumped.

May 17th
Our 4-year wedding anniversary!  Spent in Delaware with our sweet boy.  This was 4 weeks after Samuel's G-tube surgery - 4 weeks since he last ate.  Samuel continued to fight, and God continued to provide grace as we waited.

28 May
This day marked 2 months in Delaware!  We had already been here longer than anticipated.  But those precious eyes...Samuel makes every day worth it!

June 6th
Right before we sent Samuel off for surgery #3...We had been faced with another difficult decision.  Due to Samuel's GI issues, to which no one could find an answer, we decided to give Samuel a trach so that he could have the chance to move freely and develop even while being dependent on ventilator support since his belly was squishing his lungs.

June 7th
First family picture where you can see Samuel's face without a breathing tube!  We had never seen his face without tape and a breathing tube in his mouth or nose.  We still can't get over his precious cheeks!

June 17th
One of the first times holding Samuel with a "stable" airway!  After 3 months of counting the number of times that we held Samuel, the process became much more simple, and we lost count of all the snuggles we were getting with him!

June 19th
One of the first times Samuel was allowed to be held in a sitting position!  Before getting his trach, Samuel always had to lay still on his side or back, without moving his head.  Sitting up is still Samuel's favorite thing to do!

June 24th
A day in the life!  Snuggles for Mom, and Dad working diligently!

July 24th
This is what church looks like these days.  Sharing earbuds, tuned into our church back home, Bible and baby in our laps.
July 29th
Over the past 3 weeks, Seth and I have really been able to take over a majority of Samuel's care!  From the more complex things - like giving his meds, doing his trach care, and changing his ostomy bags - to the simple baby things - like changing his diapers and putting him in clothes - we love being able to be more involved now rather than having to stand by and watch!
July 27th
Samuel is now 5 months old!  It has been 4 weeks since surgery #4 when we found out that Samuel's intestines had a hidden obstruction, and realized that it was a miracle that his intestines hadn't perforated during that time.

Looking back over the past 6 months, as hard as they've been and as cloudy as the way ahead still is, we have clearly seen God's hand of guidance and experienced His loving tender grace all along the way.

This is His story, and it is all for His glory!

8 comments:

  1. WOW! Thank you for sharing your heart and your story! It is very touching. It brings tears to my eyes. I love you both so much. You are an amazing example of perseverance, strength and what a life of faith looks like!

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  2. It's an amazing walk you have! You have been so real in sharing your heart and as hard as it's been always turning to the Lord. I like the picture from June 24 -- Samuel looks like he's saying 'That's my mom! Isn't she something!' (That goes for the dad, too!)... Blessings from Jerusalem! Julie

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  3. I agree with everything Jonathan said. This brought tears to my eyes as well. You both continue to amaze and inspire me. I was so touched to watch the two you in action as you cared for Samuel. I feel honored to have witnessed a day in your routine and see how you interact with the physicians and medical personnel. You all have no idea the impact you are making on so many people. I love you all and continue to pray!

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  4. Continuing in prayer for y'all. <3 My daughter Annabelle has prayed for baby Samuel at dinner tables all over Northwest Arkansas and Texas, and we continue to pray for him and your family at nap time and bedtime. The faith of a child is truly something, and so we continue to pray!

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  5. Beautiful! Thanks for continuing to share your journey is such rare and raw form! God is truly awesome! We are so blessed to know another EVC warrior family! 😘😍💚

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  6. Beautiful! Thanks for continuing to share your journey is such rare and raw form! God is truly awesome! We are so blessed to know another EVC warrior family! 😘😍💚

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  7. Thanks for the update. Praying for you guys.

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  8. Superbly written article, if only all bloggers offered the same content as you, the internet would be a far better place.. Medical Billing Services

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