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!

Friday, July 27, 2018

No Happiness or Luck Here

"Happiness and Luck"

This phrase is etched into one of the bricks in the courtyard of the hospital.  How grateful I am that we don't depend on these 2 things!  If happiness was our goal in life, these past 18 months would have broken us.  It would be impossible to remain happy all the time during the heartache we have experienced and along the long medical journey that we are on.  If we were dependent on luck, Seth, Samuel, and I may be considered some of the unluckiest!

But instead of these unreliable, emotional things, God promises joy in place of happiness!  He promises hope and a future with Him, rather than relying on luck for our fortunes!  Praise God for these gifts!

There are many days when I don't feel the slightest bit happy - days when I can't even pretend to smile - days when I have a painful lump in my throat and choke back tears constantly.  But joy?  The joy that God gives is always with us.  It's the reason that Seth and I have found ways to laugh during some of the most painful of moments.  Joy is what allows us to see and be grateful for the blessings in the midst of the storm.  We may not be on a journey that we ever hoped for, but God has been faithful to provide us with joy!
"And do not be grieved, for the joy of the Lord is your strength."
Nehemiah 8:10b
We are not dependent on luck because God has ordained every moment of our story!  He is intricately involved, and is using all of it for a purpose!
"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope."
Jeremiah 29:11
So instead of "happiness and luck", today I am thankful for the JOY and HOPE that God gives!


The end of last week turned out to be rather eventful for Samuel.  He just likes to keep us on our toes!
Last Thursday was the first day in almost 2 weeks that he didn't have a fever!  We were so excited to see Samuel feeling so much better!  But around here it seems that as soon as one thing resolves, something else pops up.
That night, after a great day, Seth and I noticed that Samuel's tunneled central line in his chest (the one they were planning to send us home with back before they realized Samuel's belly was fixable - the one that was supposed to last long-term) was leaking.  They took an x-ray and saw that it was no longer central, and had slipped completely out of the artery.  They decided that it would be best to still have central access, but instead of doing another tunneled line (since Samuel won't be on long-term TPN anymore!) they would just give him another PICC.  They stuck him for an IV just to get through the night, then Friday morning we had to send Samuel off for another PICC procedure.
But before we could do that, we noticed when we came in on Friday that Samuel had a rash up the right side of his body. Large red spots that were hard to the touch and painful for Samuel.  In the moment, it again felt like everything was against us, like Samuel just can't catch a break...
But God is continues to show us grace!
Not only did the procedure on Friday go well, but by Saturday night the rash (that none of the doctors could identify) was beginning to disappear!  Samuel remained fever-free all through the weekend and the first part of this week, and we saw so many smiles during that time and shared so many cuddles!

But then yesterday (Thursday) Samuel had another fever, and today he has been running high as well.  After a week of no fevers, we hoped he was in the clear, but now we're left wondering again.
One day at a time!

It was fun to be able to dress Samuel during the week that he was fever-free!
Seth and I have gotten to take over a lot of Samuel's care over the past 3 weeks, including giving meds through his g-tube! We are THRILLED to be able to do this after having to sit by and watch for so long!
5 months old!  Samuel has grown so much.  He is almost 12 pounds, he LOVES to sit up, and he enjoys staring at colorful things!

Prayer Requests:

  • Right now they are planning for the reanastomosis to happen the week after next, as long as Samuel is fever-free and still doing well with feeds.  At that time they will also make a decision about whether to take out Samuel's gallbladder during that surgery, since right now it has a higher chance of infection.  Please pray for wisdom in these decisions and in the timing of the surgery!
  • Samuel's sodium levels were dangerously low at the beginning of this week as a result of making the switch from TPN to breastmilk/formula.  They have been giving him lots of sodium supplements to bring his levels up but, while his levels are finally back in a good range for now, these supplements have been upsetting his stomach.  Please pray that Samuel's body will be able to maintain sodium levels soon, despite all the diuretics he's on, without the need for supplements!
  • Please continue praying for wisdom as the doctors decide on when Samuel's next heart surgery needs to happen.
  • Please pray that Samuel won't be plagued by fevers.
  • My parents and two younger brothers, as well as Seth's parents, have all made the trip out to Delaware over the past week!  We have also been reunited recently with friends passing through the area!  We are grateful for visitors so far from home!
  • Samuel is receiving his goal amount for his continuous feeds!  He is now off TPN and lipids for the first time ever!
  • 5 Months - TODAY.  5 months with our precious boy!  I am overwhelmed.  5 months ago, as I was realizing that labor wasn't going to stop this time, I remember saying to Seth through tears "he's coming, but it's going to be okay."  We had no idea if he would live beyond minutes or hours, but I felt peace in that moment - peace that God had hand-picked that time for Samuel's birth.  There were no guarantees going into that day...Each day with Samuel is such a gift, and we will never take these moments for granted!
  • Samuel does so well with his therapy!  He can now roll onto his sides on his own, and really enjoys when we read books to him!  On his good days, he also likes to smile when we make silly faces.  He is developing a personality of his own, and we are so grateful that we get to share these moments with him!
This is His story, and it is all for His glory!

Thursday, July 19, 2018

When "Today" is Hard

Today there is no pep in my step.

Today I am forcing my smiles.

Today I am struggling to do each "next thing".

Today my words aren't flowing freely as I write.


Maybe you've experienced a day like my "today".  You are NOT alone!  Even Jesus, as He prepared to suffer and die on a cross for our sake, had a day like this.

In Matthew 26 Jesus said, "My soul is very sorrowful, even to death...My Father, if it be possible, let this cup pass from me..."

Are you overwhelmed with sorrow?  So was Jesus.
Do you plead with God for different outcomes?  Jesus, Himself, did the same thing.
When you feel alone in your circumstances, you can know that He is right there with you, because He has been there.

You are not alone.

But in the end, Jesus did not stop there.  Despite his sorrow, Jesus continued on in His prayer by saying, "nevertheless, not as I will, but as you will...My Father, if this cannot pass unless I drink it, Your will be done."

Do you have the courage to say the same?
Do you trust your Heavenly Father enough to put it all in His hands, resting in the fact that His will is best?

My prayer today - on the dreariest of days - is one of surrender.  It's not an easy prayer to make, but it's necessary.  I don't know how else I could go on in these circumstances - day after day - without being fully surrendered to God's will.  This doesn't make it easy, and it doesn't mean I will always have pep in my step...But it does mean that, at the end of the day, I will always have peace.

"Rejoice in the Lord always; again I will say, rejoice.  Let your reasonableness be known to everyone.  The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."
Philippians 4:4-7

PEACE knowing that my Heavenly Father knows best.
PEACE trusting that He is using this story - each hard moment - for His glory.
PEACE that we cannot comprehend...but I have felt - over and over again.
It's unexplainable, but oh so real.  Praise God!


Samuel is still fighting daily fevers.  They had to go up on his ventilator settings yesterday after a few days of really struggling to breathe and having a few too many episodes of turning blue.  His heart rate is sometimes over 200 when he's sleeping.  And the doctors still haven't found a good reason as to why any of this is happening.
Have there been good moments mixed in?  Absolutely!  We have had many special moments with Samuel over the past 2 weeks - from playing with new toys, to finally having the ability to establish a bedtime routine with him.

Prayer Requests:

  • We found out this week that Samuel has quite a few stones in his gallbladder.  Although this can be a cause for infection, they don't see any signs of infection in Samuel's gallbladder.  They are watching it closely and trying to decide what needs to be done.  Please pray for God to grant wisdom in this area and that there wouldn't be any infection!
  • Samuel has had cultures sent in from his trach 8+ times now.  It is not uncommon for trach cultures to have some bacteria in them, because it's a moist area, but usually just having a few of any bacteria, without any other markers, doesn't indicate infection.  Samuel's cultures have had the same kind of bacteria in it for a while now, without any other indicators of an infection in the area.  Yesterday, after sending in yet another culture, they decided to start Samuel on antibiotics again, even though they aren't really convinced it's an infection.  Please pray that God will use these antibiotics to benefit Samuel's body, and that the bacteria will not become resistant to the antibiotics.
  • We have watched Samuel's intestines drastically decrease in size over the past 3 weeks!  Please pray that this will continue so that they can reverse his ileostomy soon.
  • Samuel's lungs always take a hit whenever something else is troubling Samuel's body.  The fact that his lungs suddenly needed higher vent settings is being attributed to the fact that his body - especially his heart - is having to work so hard due to the fevers and whatever else is going on.  Pray that God will protect and strengthen Samuel's lungs.
  • The doctors are still deciding on Samuel's heart - watching to see if the coarctation gets better or worse, if the gradient across the mitral valve increases or decreases, whether the VSDs are getting smaller, and making sure that the bands on his pulmonary arteries are still doing their job without being too tight or too loose.  There are a lot of decisions that will have to be made regarding Samuel's heart, and being transferred back to Arkansas Children's Hospital any time soon depends largely on those decisions.  Please pray that God will grant wisdom to the surgeon, doctors, and us, as the time for decisions draws near.
  • Samuel is now on continuous feeds of 20 ml/hr!  This is the highest rate he has ever been on!  There is still a ways to go to get to his goal volume and calories, and to transition him off TPN, but we are thankful for progress!
  • Samuel's intestines are continuing to shrink back to their proper size!
  • Samuel's lungs responded very well to the ventilator changes!  Although it is hard to see him going "backwards" on the ventilator, we are so thankful for a machine that can help him!  Within 5 minutes of the increased settings, Samuel was back to his content self for the first time in 2 days!
  • Samuel is slowly getting stronger!  We are so thankful for all of his wonderful therapists!
Here are some pictures for you to enjoy!

Although he's been rocking the no-clothes and wet-rag-on-the-head look for nearly 2 weeks now, Samuel still finds reasons to smile!  We pray daily that God will give this little guy joy, and although a lot of the days have been rough with tears and pain, God has graciously granted moments of joy!

Samuel got a new play mat! He was pretty overwhelmed at first by all of the new things to look at, but he loves his new toys!

No matter how bad of a day you might be having, it can always be made better by sitting in daddy's lap to read books!

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

Tuesday, July 10, 2018

Pictures, Prayers, and Praises!

Sometimes life is hard...

Some days you just need someone's hand to hold.

Some days you just need to know that someone is there for you, so you don't have to do it alone.

Some days you just need to stare deeply into someone's eyes to find strength for the next moment.

Some days you just need to be held...

And held...
And sometimes being held is all you need to bring a smile to your face.

Sometimes the discomfort you're feeling is just too much and you can't hide it anymore.

Sometimes you just need to cry on someone's shoulder.

Sometimes the hardships you're facing take so much out of you that you fall exhausted at the end of the day.

Some days you may even just need someone to carry you through.

Yes, some days are hard....

BUT God always gives grace!  God always provides us with ways to get through each moment.

Some days being surrounded by friends gives you the determination to get through!

Some days you can find joy in the simple things, even when you don't feel very good!

Some days you feel loved and supported by way of a listening ear!

Some days God surrounds you with family or friends to provide you with the strength you need!

Some days that strength will give you the confidence to do great things!

And some days that strength will even provide you with JOY to smile in the midst of it all!

Yes, God is so gracious to provide you with JOY for the journey!

And some days things that used to get on your nerves can make you smile!

Some days you you will be able to distract yourself from all the hard stuff by rocking back and forth while making funny faces and learning to make noises with your mouth!

And God will always provide you with sweet rest in the midst of the chaos.

Yes, God always provides you with what you need, even though the road often is not easy.
Can I challenge you to rest in Him today?

We are so thankful for God's abundant grace! Giving us so many things that we don't deserve. Each moment with our sweet boy is a gift!

Prayer Requests

  1. We are still waiting for Samuel's custom trach to arrive. Please pray that when it does arrive it will help Samuel to breathe more comfortably and keep his airway from collapsing!
  2. Samuel has still had many days with fevers, including the past 3 days. He is currently on antibiotics (again) even though they haven't found a specific infection. Please pray that they are able to figure out the cause of these fevers!
  3. Samuel has been getting continuous trickle feeds since Thursday evening. They started him with 2 ml/hr and he is now up to 6 ml/hr, so I really do mean a trickle! So far his belly seems to be staying soft, is not tender, and he is having good output into his ostomy bag. Please pray that he will continue to do well with the feeds so that they can keep increasing his intake!
  4. Please pray that the inflammation of Samuel's intestines will continue decreasing so that they can reverse the ileostomy soon!
  5. Continue to pray that God will grant the doctors wisdom in every decision. We are still waiting for them to make a decision about Samuel's heart, and whether we will need to stay in Delaware until his next heart surgery or if we will be able to head back to Arkansas Children's Hospital for a while once the trach and GI issues are resolved.
  6. Pray for rest and healing for Samuel's body. His lungs, heart, and GI tract still have a long way to go, and it is often hard for Samuel to get comfy and rest with his fevers. Along with his fevers his heart rate and respiratory rate always shoot up and he gets pretty fussy. Pray for rest and comfort for our brave boy!
  1. Samuel has the biggest smiles! It is so fun to watch his personality develop!
  2. Samuel has been getting milk for the first time in 2.5 months, and seems to be tolerating it well!
  3. We have had a few visits from family members and friends in the past few weeks! It always lifts our spirits, gives us a taste of home, and is refreshing to be able to get out of the hospital for a bit!
  4. Seth and I are allowed to handle Samuel quite a bit more on our own now! It is fun to be able to move him around in different positions, and be able to get him out of bed some!
  5. We still just feel so blessed every day to have a place to stay at the Ronald McDonald House!
This is His story, and it is ALL for His glory!

2 BIG Updates!!!

It has been a long time coming, but we are back! Back in the blogging world. Back to sharing our story in order that God may be glorifie...