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!