By the Numbers

This has been a big week of milestones.

Monday marked 12 weeks since we've been home. 12 weeks of living in 4 different hospitals.

Wednesday marked 4 weeks of living in Delaware. 4 weeks since we made a leap of faith and left Arkansas.

Today marks 3 weeks since Samuel's open heart surgery.  3 weeks since we placed Samuel back in God's hands, for the thousandth time, and waited in HOPE.

Today Samuel is 2 months old. 2 months older than many of the doctors ever thought he would be!

Our brave boy is finding his smile!

Confession: I went back and read all of my blog posts yesterday, because I needed encouragement. I needed to remember. I needed to be reminded of how far God has brought us, how many miracles have been performed on Samuel's behalf, all of the ways God has shown Himself to us along this tiring journey.

I was blown away. Again!
So many things I had forgotten. So many little markers from God along the way that I haven't thought about recently. How GOOD and FAITHFUL He has been! I am so thankful that we have those things recorded as continual reminders, so even in the hardest of moments we can look back and say, "Yes, God is good. Yes, God is faithful. He has not forgotten us. He will not forsake us."

We are still praying for Samuel's digestive system to begin working so that he can eat again.
We are still praying for healing and strength for Samuel's lungs as they prepare to be tested.
And we are still praising God for each day if Samuel's life!

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

A Slow Process

This week hasn't been what we hoped.
We were supposed to be working on weaning the ventilator and working towards extubation (hopefully the last big step before we can go back to Arkansas!).  But Samuel had a little setback this week.  After his G-tube surgery they started feeding him again Friday night, and he seemed to be handling it well all through Saturday.  So well that they even had him back up to full feeds by Saturday night!  But throughout the course of Saturday night, Samuel's belly became distended and his body temperature dropped.  They had to stop feeding him and took cultures to see if he had an infection.  It became clear that Samuel hadn't been properly digesting the food he had been getting.

Over the course of this week all of the cultures have come back negative, but they have kept him on an antibiotic just in case something was missed, since he had so many markers of infection Sunday morning.  They also think that the slowed movement of his intestines may just be from the surgery itself.  Samuel's surgery wasn't just a "simple" G-tube surgery (which can cause the digestive system to slow down for 2-3 days), they also had to take out his intestines to check for the malrotation that they had seen on the scan the day before.  This puts the intestines into even more shock, and would explain a longer recovery time.

It is now day 6 post-op.  We are praising God for some quiet bowel sounds that returned yesterday, which indicates that things may slowly be getting back to normal!  Hopefully his recovery will continue moving in the right direction, but it still may be a few more days before they are able to start feeding Samuel again.  In the meantime, they don't want to test Samuel's lungs while his stomach is unhappy, so extubation will have to wait.

It's hard to accept another slow-down to the process, especially when Samuel had been doing so well.
It's hard to watch Samuel cry when I know part of that is due to an empty stomach that we can't fill.
It's hard.
But we know that God's timing is perfect.
We are trusting in that.
We HAVE to hold on to that!
Maybe Samuel's lungs need an extra week of growth and healing before they will be ready to breathe on their own!
Only God knows, and that's okay.

Right now, we are simply loving being able to love on our son.  In the past 2 weeks Samuel has really begun responding to his mommy and daddy's voice and touch!

He KNOWS when we are here, and he responds when we comfort him!

I can't tell you how much good this has done for our hearts.

As hard as it is to watch our brave little Samuel David going through all of this, it brings me so much JOY knowing that he feels loved.

From the time he was born we asked God to allow Samuel to know what love is - despite all the tubes and needles - especially when we had to be hands-off with him.  We asked God to comfort Samuel when we aren't with him, and to hold Samuel even though we can't.  He has done ALL of those things, and now I believe God is allowing us to see that Samuel does feel our love!  Samuel does know our voices!  But more importantly, I hope that he knows his Heavenly Father's voice.

"My sheep hear my voice, and I know them, and they follow me.  I give them eternal life, and they will never perish, and no one will snatch them out of my hand.  My Father, who has given them to me, is greater than all, and no one is able to snatch them out of the Father's hand."
     ~John 10:27-29

My greatest prayer for Samuel?  My heart's deepest desire?
That Samuel will hear and respond to his Heavenly Father's voice all the days of his life.
That, when he is old enough to understand, Samuel will daily choose to follow God.
That this story which God has written for Samuel David's life will always be a reminder to Samuel of the loving faithfulness of God.
That Samuel will bring glory to God all the days of His life!
That Samuel's lungs, which we daily pray for God to heal, will praise God with every breath!
That Samuel's heart, that the doctor's at one point said was too small and too broken, will continue proclaiming God's goodness with every beat!

Please pray:

• That Samuel's digestive system will begin functioning normally again.
• That Samuel will be able to start feeds again soon.
• That Samuel will be able to remain comfortable as they continue to wean his sedation meds.
• That God will use this "extra" time to continue healing and strengthening Samuel's lungs for the big test that is to come!

Praise God:

• For His continued provisions while we have been here in Deleware!
• That we are able to interact with and comfort Samuel!
• That we are one day closer to HOME!

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

A Stone of Rememberance

One year ago yesterday, April 20th, Seth and I walked into our doctor's appointment with so much anticipation and joy, only to find out that our precious second child, Jahleel, no longer had a heartbeat.  We found ourselves thrown back in the midst of unimaginable grief, less than 3 months after losing our first child, Penuel.  April 20th has been etched in my mind as a day I will never forget.  A day that continued a season of deep mourning and grief, but also a day that began to teach us what it meant to truly trust God.

We didn't get the miracle we wanted that day...and we had no idea whether God would ever grant us the joy of holding one of our children.

This year April 20th had a different tone to it.  We walked into the hospital yesterday with anxious hearts and desperate prayers as we spent time with Samuel before they wheeled him off for surgery.  Little did we know that this time we would get a miracle that we weren't expecting!

Earlier this week, the EVC team in Deleware decided that the next best step for Samuel, after recovering well from heart surgery, would be to get a G-tube.  This more permanent feeding tube will ensure that Samuel gets the exact amount of nutrition that he needs.  On Wednesday they did a scan of Samuel's upper GI tract to make sure that everything looked normal, but the results were not what we hoped.  From the scan it looked like Samuel's intestines had some degree of malrotation, which could cause major problems down the road. This news meant that there would be an additional part to the surgery, where they would need to tack Samuel's intestines in the right place to ensure proper function.  This would also mean a longer recovery time, and a longer waiting period before Samuel could start feeds again.  While this wasn't what we wanted to hear, we were confident after talking to the surgeon that they would be able to fix it, and it would only be a short-term setback.

I was confident in the surgeon.

Did I pray?  Absolutely!  We prayed non-stop.  But I'm ashamed to say that I don't ever remember asking for Samuel's intestines to not need any work.  While praying for a miracle doesn't mean that will happen, I believe that not praying for a miracle shows a lack of faith - faith in what God CAN do.

God proved yet again that He CAN heal without the need for doctors and surgery, and sometimes He chooses to do just that.

During the surgery it was revealed that Samuel's intestines were already twisted the right way!  There was no malrotation!  They were able to put in the G-tube without any other interventions, and Samuel came through his second surgery successfully!  They were able to start his feeds back last night through his new hardware, and today he is already back up to his full feeds.  He has another scar now, another reminder of the ways God has healed and protected him, but Samuel is doing so much better than many doctors ever anticipated.

As crazy as it sounds, I needed that reminder.  After all of the healing God has brought about on Samuel's behalf - some by way of modern medicine and some miraculously "unexplainable" - I still have moments of doubt.  I have moments of fear.  I have moments of despair.  Through it all we have proclaimed that God is good and faithful, and that is true whether or not we get the miracles we want.  Because we didn't get the exact miracle we wanted...we wanted the miracle where Samuel was born PERFECT by medical standards - requiring no hospital stay, surgeries, or medecines - but that didn't happen.  And because of that, I am confident that God has received more glory through Samuel's "broken" body than He would have otherwise.  This is not the story we wanted, but we know that it will produce the results we prayed for - God receiving glory through Samuel David's life!

Despite all that God has done for us on this journey, I still sometimes forget...but yesterday will always be a reminder.

Yesterday we got a miracle, graciously given by God.  A reminder that He is with us in the trenches.  He is with us in the mundane.  He is with us even when we forget to rely fully on Him.
Yesterday God redeemed April 20th - turning a day of mourning last year into a day of gratitude.  Yesterday was a day from which we picked up a "stone" and laid it on our altar to remind ourselves, and everyone else, that God is good, no matter the outcome.

'So these stones shall be to the people of Israel a memorial forever'...And those twelve stones, which they took out of the Jordan, Joshua set up at Gilgal. And he said to the people of Israel, "When your children ask their fathers in times to come, 'What do these stones mean?' then you shall let your children know, 'Israel passed over this Jordan on dry ground.' For the Lord your God dried up the waters of the Jordan for you until you passed over, as the Lord your God did to the Red Sea, which he dried up for us until we passed over, so that all the peoples of the earth may know that the hand of the Lord is mighty, that you may fear the Lord your God forever."
Joshua 4:‬7b‭, ‬‬20‭-‬24

We will praise God today for the miracle He has given, and we will praise God tomorrow, even if...no matter where He takes us on this journey.  God IS faithful.

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

7 Weeks

7 weeks of getting to stare at this sweet face.

49 days of getting to hold this sweet hand.

Weeks and days that I wouldn't trade for anything.

We have learned to cherish every moment and to celebrate the smallest of milestones.
Our brave Samuel David has shown more strength than any of us.  He is a fighter, and we are confident that God is going to use his courage and strength to do great things for Him!

Samuel has continued to progress well over the past week.  The doctors have said that he looks great for now from a cardiac standpoint!  The surgery did exactly what it was supposed to do!  There is still another heart surgery in Samuel's future, but for now his little heart is pumping right along.  Praise God!
Samuel has continued to do well weaning off of his sedation meds, but it is a slow process, and there is still a ways to go.  He has also done well with his tube feedings!  He is now up to his goal amount for feeds with no issues!  We are praising God for this huge step which has already allowed Samuel to start growing and gaining strength much more quickly!
The next big goal is to see if Samuel can handle being extubated.  He has had a breathing tube since minutes after he was born, so his lungs have become very dependent on the ventilator.  His lungs are also very crowded because of his small thoracic cavity.  They have been able to make a few slow weans over the past 11 days since surgery, but he is still getting a lot of support from the ventilator.  We are praying that God will heal and strengthen Samuel's lungs to be able to breathe on their own!

Hopefully within the next 2-3 weeks we will have a better idea of how much longer we will need to be in Deleware.  We are trusting God's timing, and know that He has us right where we should be for now.

Thank you all for continuing to pray with us and follow Samuel's journey!  We have been encouraged to receive notes and emails from so many of you.  It's such a sweet reminder that God has surrounded us with a huge community to support us, even when we are so far away from home.  God is so faithful to provide what we need!

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

Baby Steps Forward

6 weeks old.  5 days post-surgery.  Our little warrior is still fighting!

Samuel made some good steps forward in the past 48 hours.  He came off his blood pressure medicine, weaned down a just a little on his vent settings and sedation, and (perhaps the most exciting step forward) he had his first bit of food EVER put into his stomach!  He has literally waited his whole life to be fed, and after 6 weeks of only receiving IV nutrition, I think he was ready! So far his belly seems to be handling the tube feedings just fine!
Samuel still needs to get a bit of fluid out of his body, especially off of his lungs, but he has been making progress there as well!  There is also long ways to go on his sedation meds.  Because he was on several sedation meds before surgery, they had to increase that even more after surgery, and it will now be a slow process to get him off all of those meds.  But overall the doctors are pleased with his progress so far post-surgery, especially from a cardiac standpoint!

We are so grateful!

We know there is still a long road ahead, and we don't know what it will look like, but getting past the first major heart surgery was a HUGE step!  Yesterday Samuel started opening his eyes for long periods of time, and he was able to tolerate more stimulation with us talking to him and touching him!  Those simple things do my heart so much good.  We are continuing to enjoy every moment with our sweet Samuel David, and we are thanking God for each one!

Please continue to pray with us:
That Samuel's heart will continue to function normally.  That his mitral valve would allow enough blood to flow through without pressure building up.  That the PA bands would allow just the right amount of blood to flow to the lungs.
That Samuel will not have any withdrawals as he weans off of the sedation meds.
That Samuel's lungs would continue to grow and get stronger so that he will be able to tolerate weaning off of the ventilator, and eventually be extubated!
That God would give the doctors wisdom regarding the best plan of care for Samuel.

This past Sunday night, my grandpa passed away back home in Arkansas.  Since we have been away from home for over 10 weeks now, it had been a while since I had been able to see him.  I am heartbroken that I was not able to see him one more time, or be home with my family to both mourn and celebrate his life.  Please pray that God would continue to comfort our hearts during this time.

Praise God:
Samuel was able to come off of his blood pressure medicine!
The overall function of Samuel's heart is looking good so far!
Samuel has been able to tolerate getting milk!
Seth and I have been able to touch and talk to Samuel again!  And Samuel has opened his eyes so much in the past 2 days!

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

48 Hours Post-surgery

They said that the first 72 hours after surgery are critical.  These hours often set the tone for how things will go.  We are now 48 hours post-surgery, and Samuel has shown no major causes for concern!  Praise God!!!  There is still a long road of recovery ahead, and we're not quite to the 72-hour mark yet, but so far it seems that Samuel's heart is working as it should!

A sign one of Samuel's sweet nurses made for him!

As always, there are still many things to pray for!

• Pray that Samuel's blood pressure will stay in a good range.  They put him on a blood pressure medicine following surgery to lower his numbers, which has been working well!  Pray that his numbers begin to regulate on their own so they can start weaning this medicine.
• Pray that Samuel will be able to remain comfortable without the need for increased sedation.  Because Samuel was on quite a bit of sedation before surgery, his body has required quite a bit more post-surgery.  Pray that they won't have to increase his sedation any more, and that he may even begin to wean off of some of it soon!
• Pray that Samuel's echocardiogram tomorrow will show his heart working correctly!
• Pray for our hearts during this initial post-surgery phase, as we are not able to touch or talk to Samuel because it stimulates him and raises his blood pressure.  Our hearts are aching to love on and comfort our son.
• Pray for the swelling in Samuel's body to go down.  Pray that he will consistently be able to release the proper amount of fluid, without becoming dependent on diuretics.
• Pray that God will allow Samuel to feel loved during this time when we are not able to show him tangible love.  We are trusting that God is holding him and wrapping him in His loving arms even when we can't.

We are continuing to praise God for bringing us this far, and for the life and story that He has given to our brave little Samuel David.
Thank y'all for joining with us to cover Samuel in prayer!

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

Surgery is Over - Praise God!!!

Samuel is out of surgery! It lasted a little over 3 hours, and the surgeon said everything went well! He is resting comfortably!

Samuel's aorta is now repaired, and he has bands on his pulmonary arteries to control the blood flow to his lungs due to the 2 VSDs (holes in his heart).  His mitral valve seems to be working well right now!  We will know more about the mitral valve and the state of his lungs in the next 48 hours. The surgeon said his lungs may get sicker before they get better, but they are hopeful.

Thank you all for praying!

Here are a few post-surgery prayer requests:
- pray that his mitral valve remains sufficient so that pressure doesn't build up inside his heart
- pray that his lungs recover quickly and don't become too sick
- pray for a speedy recovery and for Samuel to remain comfortable

Our God is a God of miracles!!!

If you have any words of encouragement, prayers, verses, or anything else you want to pass along to Seth, Samuel, or I as we continue in this journey, you can email us at hisstoryhisglory@gmail.com

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

Surgery Day - Please Pray!

Tomorrow, April 6th, is the day our precious Samuel David was due, and now it is also the day that he will have open heart surgery. First thing tomorrow morning (around 8am EST) our brave little warrior will be having open heart surgery to fix his aorta, and possibly put bands around the pulmonary arteries. This surgery will last approximately 3 hours. The recovery from this surgery is complicated by the fact that Samuel has EVC, which makes his chest very small.  Any swelling from the surgery will put extra pressure on his already cramped lungs. In addition, there is some concern that the mitral valve in Samuel's heart is a little small, but they are hopeful that it will be just big enough to handle the proper amount of blood flow.

Y'all have surrounded us with encouragement and prayers throughout this whole journey, and now we need it again. Pray for peace for our hearts, strength and healing for Samuel, and wisdom and steady hands for the surgeon.
We are asking y'all to help us cover Samuel in prayer for 48 hours straight, starting tonight at 8 CST. Please sign up for one or more time slots by clicking on this link:

http://www.signupgenius.com/go/30e094aa4af29abf94-samuels

Please feel free to share this link with others so we can have as many people as possible covering Samuel David in prayer!

Please pray specifically:

• That God will guide the surgeon's hands, and give him clarity of thought.
• That the mitral valve in Samuel's heart will be able to handle the proper amount of blood flow.
• That God will give Samuel strength.
• That God will provide healing to Samuel's body.
• That God will give us peace as we wait.
• That God will continue to use Samuel's story to bring glory to His name, drawing others closer to Himself.

If you would like to email a note of encouragement, verses, a prayer, or anything else for Samuel, Seth, or I, you can send it to hisstoryhisglory@gmail.com

The Journey to Deleware

Just about the only thing that has remained consistent throughout this whole journey is that God has gone before us every step of the way.  We can look back on every single event and transition and see evidence of God's unmistakable hand guiding us along.  Traveling 1,000 miles away from home, family, friends, church, work, and everything we're familiar with, to come up to Deleware has proven to be no different!

Preparing for transport!

On Friday, March 23rd, we were presented with a difficult decision by our cardiologist.  They were willing to offer Samuel a certain heart surgery at ACH (Arkansas Children's Hospital) that would repair his aorta, however, the specialized EVC team in Deleware wasn't sure that they agreed with the specific type of surgery being offered.  Because of the narrow ribcage that accompanies EVC, which usually leads to smaller lungs, heart surgery for babies with EVC is a tricky subject.  Our cardiologist told us we could choose to have the surgery at ACH, and they would do their absolute best in caring for our sweet Samuel, or we could transfer Samuel to Alfred I. DuPont Hospital for Children in Deleware, to a team of doctors that is known for working with EVC patients.  He was in full support of either decision and left it up to us to decide.  We had no doubt that ACH would continue doing an excellent job caring for Samuel, and we had absolute confidence in the skill of the surgeon there, but the question we were having to weigh was how valuable the Deleware team's experience with EVC might be in the long run.  We asked y'all to pray that weekend as we made a huge decision regarding Samuel's care.  We felt overwhelmed and inadequate to make such an impossible decision!

BUT nothing is impossible with God!

'Ah, Lord God ! It is you who have made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you.
Jeremiah 32:17

Y'all prayed, and God answered!

After a weekend full of talking to doctors, asking questions, gathering all the information we could, pouring out our hearts to God, many tear-filled conversations, and prayers for wisdom and peace from God, those prayers were answered very clearly!  One of the things I prayed for specifically was that God would direct one of our doctors to nudge us in a certain direction - whether that be to stay in Arkansas or make the move to Deleware.  First thing Monday morning we met with our cardiologist who said that he had prayed about it over the weekend (how awesome is that?!) and felt like he should encourage us to initiate a transfer.  We took that as God's answer to our prayer for clear direction!  The next 48 hours were full of meetings, phone calls, and paperwork to get the transfer approved.  We were told that it would take about 3 days for insurance to approve the transfer, and then 24-48 hours after that to get the actual transport arranged.  They estimated that we would probably fly out Friday or early the next week.  Tuesday night when we left the hospital, no approval had been given that we were aware of, so we were in complete shock when we walked in Wednesday morning and the first thing our nurse said to us was that Samuel had been approved for transport that day, and would be leaving within hours!

We thought we were not prepared...
Our bags weren't packed to leave.
Our families weren't in town to meet Samuel and see us off.
We hadn't had the chance to say goodbye to friends we had made.
We didn't have travel arrangements for getting to Deleware because we hadn't been told yet whether one, both, or neither of us could ride with Samuel.

But 2 hours after walking into the hospital Wednesday morning, Samuel and I were leaving the hospital on an ambulance to the airport!

God's ways are not our ways...but His plans are always so much better!

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord . For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.
Isaiah 55:8‭-‬9

Despite how unprepared we felt, we looked back at the end of that long day and saw how God actually had prepared us to make the move!

Seth and I had stayed up late Tuesday night sorting through things we should take and leave. So even though our bags weren't actually packed, we had sorted through a majority of our things already, which made the frantic packing that Seth and our families had to do that afternoon a little easier!
Since flu restrictions were still in place, none of our family members had been able to meet Samuel yet, but we had been told that they would allow family back before the transport happened so they could meet him!  This is why we were depending on the 24-48 hour notice, so that both of our families would be able to make it to Little Rock in time.  That didn't happen, and it is still painful to think that so many of those who love Samuel most still haven't met him yet.  BUT God gave us a little respite from that pain.  My mom and sister had come into town on Tuesday to visit, and one of Samuel's sweet primary nurses got permission for them to come back and meet him even though the transport hadn't been officially approved at that point!  We are thankful that at least 2 family members were able to meet our precious Samuel David, but we look forward to when all of our families will be able to meet him!

We also had a few more family members who were able to get there within a couple hours after Samuel and I left to help Seth with all of the last minute things that needed to be taken care of before he flew out that afternoon to meet us in Deleware.  We are so thankful for our families!
Even though it was extremely short notice, someone so generously bought Seth's ticket for him to fly to Deleware, and someone else picked him up from the airport after midnight that night so he could get to the hospital!

We we're exhausted after this long, whirlwind of a day, but we were also overwhelmed with gratitude towards our amazing families, and to God!  There is no denying that this all happened in God's timing, because it surely wasn't our own!  And yet He once again provided every step of the way.  We asked y'all to pray for our safety, and Samuel's stability, and He did that as well!  Samuel definitely had some recovering to do after the trip, but all things considered he did very well during the transport.

So here we are in Deleware!  Far from home, family, friends, church, and our "normal" life, but living right in the center of God's big-picture plan.  Samuel has settled in well, and the team here is understanding his needs a little better every day.  They should be giving us a decision on the type and timing of Samuel's heart surgery within the next couple of days, so we are praying God gives the doctors wisdom as they decide what is best for Samuel.

Please pray:

• For Samuel to not only remain stable, but to gain strength and grow during this waiting period.
• For God to give the doctors wisdom in deciding the method and timing of Samuel's heart surgery.
• We continue to pray for a miracle that God may restructure Samuel's aorta without the need for surgery!
• For comfort to fill our hearts when we feel homesick, and for peace to overwhelm us as we wait and trust our new care team.

Praise God:

• For bringing all 3 of us safely to Deleware!
• For providing us a place to stay the very first night we were here!
• For the wonderful care Samuel received at ACH for the first month of his life!
• For the connections He put in place months before Samuel's diagnosis that led us to finding this team of doctors who work with EVC!

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