Arkansas Bound!!!

Samuel David - caught daydreaming....

Daydreaming about going back to his beautiful home state of Arkansas. Daydreaming about the day he finally gets out of an Intensive Care Unit. Daydreaming about the day he can live life out of a hospital for the first time. Daydreaming about the day he can finally go HOME!

Lord willing, one of those dreams will become reality TODAY!!! Just 6 days short of spending 5 months at A.I. Dupont Hospital for Children in Delaware, the plan is to transport Samuel back to Arkansas Children's Hospital today! We will still be 3 hours away from home, but that's so much closer than half a country!

Praise God that insurance finally approved the transfer after several denials!

Prayer Requests:
1. Pray that Samuel does exceptionally well being transported! It would be awesome if they allow me to comfort him during the trip.
2. Seth has to fly separately out of Philly because the transport team can only take one of us. Pray for us as we are apart for a large part of the day, and for safe travels for us all!
3. Pray for Seth and I as we transition to a new hospital with new doctors, nurses, policies, ways of doing things...new everything!
4. Pray that if this transport isn't supposed to happen today that God will make that clear SOON!
5. Pray that God will give wisdom to the new medical team that will be caring for Samuel.
6. Pray that God will work in ALL of the details, and that He will receive glory through this journey!

Thank y'all for praying!
Arkansas, here we come!

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

God Works in the Waiting

This photo is answered prayer.  This photo causes us over and over again to raise up our voices in thanksgiving to our gracious Creator.  This photo is so sweet to see!
Because in this photo we are reminded yet again that God is in control - He is in every detail.  God so carefully ordains the timing of everything.  Even though we may never quite understand in our lifetime why a certain thing happened at a specific time, we can trust that God's reasoning far surpasses our limited knowledge.

The "standby" screen in the picture above?  That's the screen on the hospital-grade ventilator that Samuel has been on since birth.  The blue unit with it's screen lit up?  That's a HOME ventilator.  Yes, H-O-M-E.  That's a type of ventilator that Samuel could actually leave the hospital with.  It's not as powerful as the "cadillac" hospital version, so it's not uncommon for the transition to take lots of time and many failed attempts.

On Friday they had tried to transition Samuel to the home vent, but he had failed in less than a minute - which is quite unusual to fail so quickly.  So when Monday rolled around, inquiring minds were baffled by the fact that Samuel hadn't seemed to handle the switch even for a moment.  So they decided they would try again.
But when they turned on the unit to match the settings?  The settings from Friday's attempt were still programmed in, and they realized a LARGE mistake had been made which caused Samuel to receive MUCH less support than he was used to getting.  No wonder he seemed like he was drowning so quickly!

Let me tell you that, at this point, it would have been easy to point fingers and get upset about a mistake made.  But to be honest?  That didn't even cross my mind.  What ran through my mind immediately (and I'm pretty sure came out of my mouth too) was praise and thanksgiving!  Mistakes?  Those happen.  Samuel wasn't any the worse off for it.  Sure, we had spent the weekend somewhat discouraged, and we were worried about the upcoming transport which would also require Samuel to be on a less powerful vent, but we continued to trust God to work in ALL of the details.  There must have been a reason for Samuel to not transition before the weekend - even if it was just God teaching us the lesson of trust, yet again!

When they transitioned Samuel on Monday?  After putting in the correct settings?  He hardly noticed!  Not only that, but lots of times when transitioning to a home vent they have to go up on the settings some to try to actually match the support that the more powerful ventilator was giving.  But they didn't have to bump Samuel up on any of his settings!  Within 30 minutes he was sound asleep - the only difference being a higher than his "normal" respiratory rate.
Today?  Two days later?  Samuel is STILL on the HOME ventilator, and seems to be doing even better than when he first got on it.

ALSO on Monday, we were told that we would be flying out of here on Wednesday at 11!  We were ecstatic and nervous all at the same time, but mostly just excited to get back to our home state!
But that was all pending insurance...which yesterday ended up denying the initial request for transport.  So today the wonderful team here is working through some extra steps to appeal the insurance and try to get us back to Arkansas Children's Hospital.  We are so grateful for the countless hours they are putting in to try to make this happen! Because of this, we will likely not be leaving today, but it could still be by the end of this week if insurance approves of the transport.

We are trusting that God has a reason for this delay!  We are trusting that His timing will be perfect!  So we are not despairing today that we aren't on a plane...we are instead choosing to rejoice that Samuel has more time to strengthen first!  We are looking at this as an opportunity for the team here to have more time to tie up loose ends!  Besides, we've been waiting in Delaware for almost 5 months now, so what's a while longer?

And Samuel doesn't seem to mind all of the waiting, as long as he is getting attention!

But if there's one thing we learned from our transport up here, it's that things can happen at a moment's notice!  So we are all packed and ready to grab our bags at any time, trusting that none of this is a surprise to God.

Prayer Requests

• Please pray with us that insurance will approve the transport, and that it will happen in God's perfect timing.
• Please pray that Samuel will continue to thrive on the home vent.
• Please pray that Samuel's belly girth will regulate, and his intestines will be able to speed up a bit. While he is passing gas and stooling, things seem to just be moving quite slow, and his girth some days is quite large.

Praises!

• Praise God for Samuel's successful transition to the home vent!  This was a necessary step before we would be able to complete all of our training to take him all the way home!  So we are one step closer.
• Praise God for working in all of the details!
• Praise God for such a hard-working team of people up here who are working to get us back to Arkansas!

This Could Be the Week!

That's right, this could be the week that we get back to Arkansas!

Listening closely to the good news!

Samuel is pretty excited to be going back to his home state!

Based on Samuel's echocardiogram last week, the doctors were all in agreement when they met last Thursday.  Samuel's heart is functioning well for now, and shouldn't need any interventions for at least several more months.  Because of that, they see no reason to keep us in Delaware, and they have already initiated the transfer process back to Arkansas Children's Hospital!  This can take quite some time to jump through all the right hoops.  But, as we know all too well from our transport up here, some times it can happen much quicker than anticipated!  So we spent the weekend making sure we have everything packed up, just in case!

It still feels surreal that after almost 5 months we may finally be heading back to Arkansas!  We will still be 3 hours away from HOME when we are transferred back, but it will feel so much more like home than Delaware.  However, we are so grateful for our time here! We are thankful that God led us to the DuPont Hospital for Children when He did.  Otherwise Samuel might not still be here with us.

Along with our excitement, there is also fear and anxiety fighting to creep in.  As we found out back in March, different hospitals function so differently.  They use different equipment, different techniques, and they don't know Samuel.  They won't know what Samuel's "normals" are.  They won't know what Samuel likes and dislikes.  So Seth and I will have to boldly advocate extra hard for Samuel over the next few weeks.  We are praying for boldness and wisdom, as well as discernment to know when a change might be a good thing.  We are also asking God to fill us with peace, so that fear and anxiety have no room to dwell here.

So the adventure continues!  Things could always change, as they have before.  We are praying that God will just cause everything to fall through if it's not our time to head back yet.  Otherwise, we're praying for a smooth hospital-to-hospital transition! We will keep y'all posted as we know more.

He is Worthy of Praise!

One year ago, yesterday, we saw our precious Samuel David for the first time!  We were overwhelmed, and our hearts were filled with joy when we saw his tiny heart flickering!  God had again placed life in my womb, and we prayed that this time we would be given the unspeakable joy of holding that life in our arms!  We had no way of knowing that day just how special that tiny flickering heart was.  We never would have imagined how much help that tiny heart would need to be able to function well.  But we praised God then, and we continue to praise God now, for Samuel's precious heart!

In fact, praising God for things has become a big part of our every day life.  We start every prayer by giving thanks and praising God.  We are learning to praise God in EVERY circumstance.  And, believe me, it changes your perspective!  It forces you to focus on God's unfailing attributes, rather than the circumstances surrounding you.  We praise God for the little things, we praise God through the hard things, we praise God even when prayers aren't answered the way we hoped.  Because God always remains faithful and worthy of our praise!

I will extol You, my God and King,
and bless Your name forever and ever.
Every day I will bless You
and praise Your name forever and ever.
Great is the Lord, and greatly to be praised,
and His greatness is unsearchable.
Psalm 145:1-3

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Tomorrow is a big day!  For the past 4 months Samuel's heart has really taken a back seat to his other struggles.  They have still monitored it very closely (we are in the CICU, after all!), but if his heart were the only challenge we would have been back in Arkansas 3 months ago!  But since we have been here 3 more months dealing with other complications, that means Samuel's next heart surgery is 3 months closer.  The problem is that we don't know just how far out his next surgery will be.  So now that Samuel's GI issues are resolving, and he is able to breathe more comfortably, Samuel's heart is back to the forefront of the discussion.

Tomorrow morning (Thursday) Samuel's case will be presented at the weekly cardiology conference, and all of the doctors will give their input.  They will be deciding what interventions, if any, need to be done in the immediate future.  They will weigh the risks and benefits of trying to balloon the scar tissue in his aorta again.  They will be trying to predict how far out we may be from Samuel's next heart surgery.  And these decisions will dictate our timeline for getting back to Arkansas Children's Hospital - whether we are just weeks away from transport to our home state or if we still have months to go here in Delaware.

We have witnessed, time and time again, how God has used doctors to make the right decisions at just the right time.  We trust in His sovereignty of bringing just the right doctors to us at just the right time.  So tomorrow we are again praying that He will have just the right doctors there.  We are praying that He will impart wisdom to make the best decision.  And we are praying that God will allow the doctors to speak in unity.
As always, we are anxious to get closer to home, but we also want to do what is best for Samuel, even if that means several more months in Delaware.

Prayer Requests:

1. Pray for unity and wisdom tomorrow as the doctors meet to discuss Samuel's heart!  We likely won't get an exact answer tomorrow, but that's when a majority of the discussion will be happening.
2. Pray that Samuel's GI tract will continue to regulate and do well with feeds!  For the first several days his stools were very loose, which caused his electrolytes to get thrown for a loop as he became dehydrated.  His levels are looking better now, but pray that things will continue to regulate since it's been nearly 4 months since everything was functioning!
3. Pray that the site where Samuel's ostomy was will heal up well.  They closed it with a wound VAC, which was left on for several days post-surgery.  When they took it off Sunday the wound wasn't completely closed, but also didn't look too bad.  They are just keeping a close eye on it to make sure it closes on its own and that it doesn't get infected.

Praises!

1. Samuel is back up to his goal amount of feeds, as of last night!
2. So many dirty diapers!
3. Samuel is developing so much physically! His head control has improved leaps and bounds just over the past week! He is also responding to us with so many smiles now!

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

Post-op

Samuel's surgery yesterday went well!  The surgeon was able to cut out the dead part of the intestines, and connect them back together since they are roughly the same size now.
Samuel's recovery is also going fairly well!  He has just been needing a lot of hands-on affection today, and I don't blame him.

So for now we love on him as best we can, and we wait.

We wait for more dirty diapers as a sign that his system is ready for food.
We wait for Samuel's ostomy site to heal up so the wound vac can be taken off.
We wait for the pain to decrease so he will be back to his normal self.
We wait for doctors to make decisions about Samuel's heart.
We wait to find out what the next steps are now.

Praises? Oh yes, there are many!

• Less than 24 hours post-surgery, Samuel had already pushed out some stool!  It has been 4 long months since he last did that...Praise God!  The doctors are still wanting to see a little more output before they start feeds back up, but this is progress!
• The levels the doctors had been watching, following the discovery of Samuel's gallstones, had normalized over the past couple of weeks!  Because of this the surgeon didn't think it was necessary to remove Samuel's gallbladder during the surgery.
• Samuel only required one dose of Morphine right after surgery, and one more overnight. Other than that, his pain has mainly been controlled by Tylenol!  This greatly lowers the risk of him having to go through narcotic withdrawals again!
• This surgery didn't have holding restrictions like most of Samuel's other surgeries, so we were able to hold Samuel right away!  Which was exactly what he needed to lower his heart rate post-op. Praise God for snuggles!

I could go on and on!

Please also join us as we pray for these things:

Pray that Samuel can begin getting feeds again soon!  I'm pretty sure part of his fussiness is due to hunger.

Pray that Samuel's ostomy site will heal up quickly!

Pray for no infections!

Pray for wisdom as Samuel's team of doctors makes decisions regarding his heart, lungs, and timing of future procedures/surgeries.

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

It's Surgery Time!

It looks like another surgery is on the horizon for tomorrow!  This is scary and exciting all at the same time.  Sending our precious baby off to surgery never seems to get easier, and I don't expect that to change.  It's hard to send your child off to get cut into yet again.  It's hard knowing that so many things can go horribly wrong during even the most routine of surgeries.  It's hard waiting - waiting to get an update of how things are going in the operating room - waiting to hear how our son is doing.  It's hard when the surgery goes hours longer than expected with little to no updates...It's hard walking in seeing Samuel sprawled out, with his tongue hanging out of his mouth, not initiating any breaths on the ventilator, with new areas of glue or sutures, lines and tubes.  It's hard watching as he tries to fight the sedation - when we know he is in pain, but he doesn't understand and just wants to wake up.  It's hard seeing that look on his face...that look that I've seen too many times - that helpless look begging you to take the pain away, knowing that he desperately wants to be held, but realizing it will probably be several more days before I am allowed to hold my son again.

Nothing about this is easy.

BUT this surgery tomorrow has been much anticipated!  This surgery tomorrow will, Lord willing, be the completion of a saga that added 4 months to our stay in Delaware!  This surgery tomorrow will get rid of the bag on Samuel's stomach and allow him to have his first dirty diaper in 4 months!  (Who ever thought we would be excited about that?!)  This surgery tomorrow will allow Samuel's intestines to function normally - after being told 3 months ago that they were unfixable.

But Samuel is a fighter.

And God works in mysterious ways.

Lord willing, Samuel will have his reanastomosis surgery tomorrow. This is nearly 6 weeks after his last GI surgery when they found the hidden obstruction that miraculously had not perforated, and gave Samuel an ostomy to allow his intestines time to heal and return to their normal size.

As with any surgery (and every other day in the life of Samuel), there are many prayer requests!

1. Today Samuel can only have clear liquids through his g-tube, so his belly will likely get to feeling pretty empty.  Please pray that this won't cause extra fussiness, and that he will have a great day leading up to surgery!
2. Last week Samuel began having fairly frequent fevers again.  In anticipation of surgery they went ahead and started him on an antibiotic, even though they didn't find an actual infection.  Since starting the antibiotic on Saturday Samuel's fevers have disappeared and his secretions are clearing up!  Please pray that this course will completely clear out the Pseudomonas bacteria from his trach so it won't keep popping back up.  Pray that the fevers will stay away, and that this won't effect surgery in any way!
3. We don't actually have the official word yet that Samuel will be going for surgery tomorrow.  He was put on tomorrow's schedule 2 weeks ago because things seemed to be progressing well, but the surgeon was out of town last week so we haven't heard whether he is pleased with the results of Samuel's contrast study and x-ray from last week.  Please pray that this surgery will happen in God's perfect timing!  From our human standpoint we are praying tomorrow is the day, because this ostomy care is no joke!
4. Speaking of ostomy care...the skin around Samuel's ostomy has gradually gotten worse over the past 6 weeks.  It's nearly impossible (especially on a squirmy baby) to keep the stool from the ostomy from getting trapped between the skin and the bag, which just eats away at the skin.  But the more you take the bag off to clean the skin, the more irritated the skin can become.  Then you have to reapply the bag to the already irritated skin...The area around Samuel's ostomy has become very raw (I'll spare y'all a picture!).  Please pray that this area won't become infected, that it won't hinder surgery, and that it will heal up quickly after surgery!
5. It has been nearly 4 months since Samuel's intestines last functioned completely normal.  Please pray that they will return to normal function immediately following surgery!  We are praying that Samuel will be able to return to full feeds quickly after surgery, and that there will be no complications!

Thank y'all for continuing to pray with us!  God has done great and marvelous things all along this journey, and we have come to trust Him more and more with each passing day.  We know that, no matter the outcome, we can continue to trust Him because He is using all of this for a greater purpose.  Samuel's story has spread further than we ever could have imagined, and God is using his life to touch more people than we could have dreamed.  We love hearing from y'all about how this journey has touched your life or someone else you know.  We are humbled and grateful that God chose us to be the parents of this sweet, special boy!  I often stare at Samuel David in awe of the fact that I am blessed to be his Mommy!

Surgery #5, here we come!

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

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!

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!

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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.

Praises!

• 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!

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.

Today....

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!

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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.

Praises!

• 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!

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!

Praises!

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!