Homeward Bound!

Aannnd....we're off!
It has been raining all day, and Seth is following behind us in his truck. Please pray that we will all have a safe journey home! It is a 3-hour drive.
Samuel has been doing well so far!

TODAY is the day!!!

We're just about as excited for today as we are for when daddy makes noise with a plastic bottle! And that's pretty excited!

As of now, the plan is still to leave here in an ambulance around 11! However, since it is a non-emergency transport that time could be pushed back if the ambulance is called out for another emergency.
There are also a few things that still have to happen this morning before we can leave. And if Samuel does anything out of the ordinary this morning discharge could still be postponed.
All of that to say...we are trusting in God's perfect timing! And trying not to stress!

I will try to keep y'all updated throughout the day. They will likely be short and sweet!

Please pray:
•For all of the pieces to fall into place this morning.
•For Samuel to do well for transport, with no emergencies.
•For Samuel to continue to remain free of any infections and viruses.
•For Samuel to adjust well to being home!
•For Seth and I as we make this big transition.

Today is NOT the Day...But That's OK!

Today is October 8th - the day we could have been going home.

But we're not, and that's OK!

Discharge has been pushed off a week, and is tentatively (it's always tentative!) scheduled for the 15th now. We just need a bit more time here to figure out the balance of diuretics and electrolytes. Samuel's body is showing that it needs high doses of diuretics, but giving those high doses makes his body get rid of electrolytes - mainly sodium and potassium. Those levels have remained low for a while now despite significant increases in the supplements that he is getting. If his diuretics are weaned then he has increased work of breathing and his sats drop, but if his diuretics are increased his electrolytes suffer even more. So it's been a non-stop balancing act that we still haven't quite figured out.

But truthfully? It didn't even faze us when we were presented with the idea of staying another week. What's one more week after 8 months away from home? We know that God had this in the plan all along. We know there must be some reason we are here for an additional week.
If nothing else, we have learned along this journey that God's timing is always perfect! Even when we can't see it in the moment, we have been shown over and over again that each moment, each decision, each holdup - they all have a purpose.

Remember back at the beginning of June when Samuel had surgery to get his trach and central port? We were supposed to be sent back to Arkansas Children's Hospital 2 weeks later! We were SO excited! But then Samuel started getting persistent mystery fevers. And we had some of the hardest days...We still don't know the cause of those fevers. But what we do know? What we do know is that without those fevers we would have been on a plane back to ACH before the end of June. Without those fevers we would have been gone from Delaware before anyone realized just how bad Samuel's GI issues were, and that he had been misdiagnosed with a pseudo obstruction. Without those fevers we would have been sent back with Samuel still on TPN, unable to eat, and an obstruction in his intestines that no one knew existed!
It was only because of those fevers that our timeline was pushed back, and because of that the GI surgeon was able to offer us another last-ditch surgery to relieve some pressure from his ever-growing belly. But instead of just relieving pressure, he found the one thing that everyone said wasn't there! And here we are 3 months later and Samuel is being fed milk through his g-tube! Not only that, but if they hadn't found the obstruction at that time? Possibly if it had been even a few more days...Samuel's intestines could have easily ruptured, and then this would really be a different story.

The point is that we never know what is best. Only God does. We have seen that over and over again, so we will continue to trust in Him. We are not about to let another week of hospital life get us down!

My first time wearing Samuel! I think you can tell that we both enjoyed it!

Child life bought by an exersaucer for Samuel to try out! With a few modifications, he enjoyed being able to sit up and play with some new toys!

Prayer Requests:

• Pray for Samuel's fluid balance to remain stable. They did an x-ray today and his lungs are looking very clear! Which is great.
• Pray that Samuel's electrolytes will stay in a good range.
• Pray that the doctors can figure out why Samuel's body is requiring such high doses of multiple diuretics. The current state of his heart requires diuretics, but not this much. It is reasonable that he also needs some diuretics due to the state of his lungs, but (again) not this much. And while babies with EVC do often require more diuretics than most other babies with cardiac or pulmonary issues, the amount Samuel is on is even higher than what would be expected by that reasoning. Maybe it's the combination of those 3 things? Or maybe there's something else that we're missing...please pray that if something is being missed - if there is another cardiac or pulmonary issue that hasn't been diagnosed - that God will reveal it this week!
• Samuel will be having another echo on Wednesday, but this time they are going to sedate him. They are trying to get very clear pictures of certain parts of his heart that are often difficult to see on babies with trachs. The reason they are wanting this is to make sure there are no other complications that they are missing - any other reason that he might be requiring so many diuretics. Please pray that Samuel does well for this, and that they are able to see everything that they need to.
• Pray that Samuel will continue to remain healthy! No viruses or infections!
• Pray that God will continue to prepare our way home! Especially pray for God to hand pick the perfect home nurses for Samuel - that they will be loving, trustworthy, and skilled.

Praises!

• We are closer to going home than ever before!
• Today was the first day in several weeks that Samuel's sodium and potassium have both been within the normal range!
• After almost 2 months of no growth, Samuel is starting to gain some weight! He is currently 12 pounds, 9 ounces!
• Samuel is tolerating longer periods of time in his car seat! He requires a LOT of distraction, but I think we will be able to make it work for the 3-hour ambulance ride!
• From the pictures you can see that we tried a few new things over the past week, and Samuel enjoyed each one!

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

D-Day is Approaching!!!

I promise I am not trying to only do monthly updates, but this past month has kept us busy! Maybe some time I will try to do a post on what a day-in-the-life looks like here, so y'all can see how full our days are. I have so few long stretches of time where I can sit down and write a post, so I have written a lot of unfinished ones over the last month. But I want to keep y'all updated because there have been a lot of exciting things that have happened! There are also still many prayer requests, and we have so appreciated having each of y'all on this journey with us knowing that y'all are lifting us up before the throne of God.

But before I tell you about the SUPER exciting news...here is a picture/video summary of some other exciting things that happened over the past month!

September 1st

Samuel had his first really big belly laugh! It was such a special moment seeing him shake with joy! After a few minutes I began to cry. Tears of joy for seeing my baby laugh, but also tears of longing as I desperately wish we could hear his sweet laugh.

September 3rd

Samuel had his first babysitters! My sister and a sweet friend of ours from church (both of whom are nurses!) drove down to see us and let Seth and I go out on our first date away from the hospital in a long time! We were so thankful for the time to step away while knowing Samuel was in good hands!

September 4th

Samuel successfully transitioned back to the home ventilator! We are SO thankful that they put him on it for the last 3 days in Delaware, because when they transitioned him here Samuel actually failed within the first 10 minutes. BUT because he had successfully been on the home ventilator in Delaware, we were able to tell them 3 specific things that had been different at the other hospital. After a couple of hours of gathering the right supplies, they tried Samuel on the home ventilator again and he has been on it ever since! Yet again, God's hand at work!

September 5th

We were given a new book today by some dear friends who came to visit! It is such a good book for kids over-viewing creation, the fall, sin, and God's plan of redemption!

Samuel loves to look at books as we read to him!

September 6th

Today we moved out of the CVICU, down to a non-ICU floor! This is Samuel's first time EVER to not be in an Intensive Care Unit! He spent the first month of his life in the NICU at ACH, then the next 5 months in the CICU (cardiac ICU) in Delaware, and was then transferred back to the CVICU (cardiovascular ICU) here at ACH. It was so strange for us to be in a room with fewer monitors and beeping! But now that we are here we officially begin our transition home!

September 8th

Today Samuel really began interacting with his tongue! His favorite game for about a week was sticking out his tongue and smiling, especially when he would see someone else's tongue! He thinks tongues are pretty funny!

September 11th

Today we put Samuel in his carseat for the first time ever! He has to start preparing for the 3-hour ride HOME!

September 13th

Samuel went on his very first stroller ride! We got to take him outside, and he was all smiles!

September 16th

Samuel found a new favorite game of cracking himself up with his own serious face! He had us laughing so hard!

September 19th

Samuel did tummy time on a ball today and tolerated it for 5 whole minutes! This is a big deal for Samuel! Because of all the surgery's he has had on his belly/chest area, his front side is very sensitive so he has never tolerated tummy time. He wasn't even able to do tummy time much until just the past couple of months. It took distracting him with live music, but he showed great improvement!

22 September

We have been waiting for ophthalmology to see Samuel for a couple of months now, but apparently it is very hard to convince them to see someone who is inpatient. We are thankful they were able to do an exam for him, and we are now patching his strong eye for 2 hours every day. Although he is not the biggest fan, he has been a trooper, and we have already seen improvements!

25 September

This morning Samuel had an MRI of his brain because there has been some concern that he has more fluid on his brain than usual. The MRI confirmed this. However, as of right now it is not causing too much pressure, and Samuel is not showing any signs of it effecting him. So it is something we will just have to keep a close eye on. Samuel did so well for the MRI in the morning that he was still able to go on his scheduled stroller outing that afternoon. Several of my family members drove down to join us - including Samuel's grandparents, a couple of aunts, and 3 cute cousins! His cousin Amelia, in particular, has been anxiously waiting months to finally meet "baby Samuel" (who she so sweetly remembers to pray for daily!) and she was so excited to hold him!

27 September

Samuel is 7 months old!

October 1st

Samuel LOVES his music therapy! Music helps get him through some of the hard things that he has to do daily.

Those are just a few brief highlights...

But now onto the SUPER exciting NEWS!

We have been back at Arkansas Children's Hospital (ACH) for almost 6 weeks now, and D-day is being discussed as a reality!

Discharge day!!!

Instead of simply talking about it as some future event down the road discharge now has more of a timeline, and....are you ready for this??

It may be less than ONE WEEK AWAY!

Could it change? Absolutely. In fact, many would probably expect it to change, especially considering Samuel's many complicating factors. It is dependent on Samuel remaining stable, not getting sick, ensuring that his electrolytes stay in a good range, and passing his 3-hour car seat test. All of our medical equipment and supplies also have to be delivered in time, and there can't be any hiccups with insurance. All that to say, we are simply not letting our hopes get too high (something we have become very accustomed to doing), yet at the same time living expectantly and preparing as if it were happening any day!

Lord willing - if all stays on track - we may be taking Samuel HOME with us for the first time ever in six days - October 8th.

October 8th of last year was the day we would have been welcoming our first baby - Penuel - into this world. But God had other plans.
Last year I dreaded the arrival of October 8th. Last year that date was full of tears...
This year? This year October 8th is once again a much-anticipated date! This year we are hoping that October 8th is the day we get to stop living in hospitals for the first time in over 8 months, and take our precious son HOME with us! God is once again redeeming a painful day.

As we prepare to transition home, my family has been working tirelessly to get our house ready so that we haven't had to make the 3-hour trip home, away from Samuel.
Our house that we left spur-of-the-moment over 8 months ago. Our house that didn't have a nursery set up because we still had 10 weeks before Samuel was supposed to arrive and we hadn't had any of our baby showers yet. Our house that now needs to be sanitized, set up, and prepped for a medically complex child to live in!

Many of y'all over the course of this journey have asked ways you can practically help, and there hasn't really been a lot for people to do long-distance. But, for those who have been anxious to help, we do have baby registries set up on Amazon.com and Walmart.com with some of the many supplies we still need to get. We need lots of the typical baby stuff like crib sheets and baby soap, but we will also need many non-traditional things for Samuel - like pipe cleaners to clean his trachs, bins to keep in the refrigerator to organize his meds and his milk that he is fed continuously, and hand sanitizer to protect our medically complex son from a cold that could be life-threatening to him. We are slowly gathering all of the things we will need to properly care for Samuel, and it makes it feel more real that we may actually get to bring him home with us!

But, while we can't wait to go home, we also don't want to rush out of here if Samuel is not ready. Please pray with us that it will happen in God's perfect timing!

Prayer Requests:

• Pray that the fluid on Samuel's brain will not increase, and that it will not cause him any issues!
• When we arrived back at ACH they started weaning Samuel from some of his diuretics. After a couple weeks, it started catching up to Samuel and he began to struggle with breathing and keeping his sats up. They have slowly been going back up on his diuretics, but now Samuel is not responding as well to them as he used to. Please pray that they will be able to figure out the perfect doses for Samuel, and that his body will be able to get rid of all the fluid it needs to.
• Along with the diuretics, Samuel has also been struggling with low sodium and potassium levels, so they keep having to increase his supplements. Part of this is due to the diuretics he is on, but it may also be due to the fact that part of his intestines have been taken out so there is not as much real estate to absorb all of the nutrients he needs. Please pray that he will be able to maintain these levels in a good range.
• Pray that insurance all works out so that we can take Samuel home and be provided with the nursing coverage that we need, especially at night so we can sleep!
• Pray that our home nurses will be trustworthy, loving, and skilled so they can help us take care of Samuel well!
• Pray that Samuel will do well in his car seat for the 3-hour ambulance ride home!
• Pray that all sickness stays far away from Samuel!

Things we're thankful for?

• We are close to going home! Although it may not happen next week, we are just excited to have a discharge date because that's the closest to home we've ever been!
• Samuel's joy continues to shine through even on the toughest days!
• God's grace that has gotten us through each moment!
• Our family in NWA who are helping make it possible for us to come home!
• All of you who are praying for us and supporting us in so many ways!

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

So Close, But Still Further to Go!

We have now been back at Arkansas Children's Hospital for a little over a week!  And the fact that I have failed to update until now might clue you in to what kind of week it has been.

This face just about sums up our week!

The good, the hard, the surreal.

First of all, Samuel did so well during transport!  He slept for a majority of the flight and two ambulance rides, after only one small dose of extra sedation.  A world of difference from when he was transported up to Delaware in March!

Since being at ACH, Samuel has already made some progress!  He is now completely off of another sedation med, leaving him with just one more!  He has also handled some major weans on his ventilator settings for the first time since April!  They took him off of the home ventilator when he got here, just because they have a different method of doing things.  But hopefully Samuel will continue handling some vent changes throughout the coming week, and will be put back on the home ventilator within the next few weeks.  One step at a time!

Other exciting news?  We have an actual room!  A room with no other patients.  A room that has doors.  A room that we can sleep in with Samuel!  Six months of staying by his bedside from early in the morning to late at night, every single day.  Six months of having the heart-breaking task of saying "goodbye" every night, not being allowed to sleep by his bedside.  Now, after six months, we finally get to wake up to Samuel's wiggles and alarm sounds in the middle of the night!  While many parents of young children are desperate to get a good night of sleep, Seth and I have been dreaming of this night!

While there has been progress made, it's still possible that we are months away from going home.  We hope that it's sooner than that, but we've been told to not get our hopes up.  They don't get in a hurry when it comes to discharging children who have trachs.  There is in-depth training that has to be completed (a lot of which we did in Delaware!), medical equipment that has to be acquired for home, insurance to deal with for setting up monthly medical supply deliveries, mandatory home nursing slots that must be filled...we have to find a pediatrician, cardiologist, pulmonologist, GI specialist, nutritionist, therapy services, and a DME company close to home.  Lots to do, and it all takes time.  So as we wait, we will continue to see how much Samuel's lungs can be challenged.  So far he's taken some good strides, and we think he's up for the challenge!  God continues to give him strength!

But we are exhausted.  Mentally.  Emotionally.  Physically.  This has been a hard 10 days.  We have often been the communication bridge between the doctors who have been working with Samuel for the past 5 months, and the doctors on our new medical team in Arkansas.  We are on high alert for changes they want to make that we know are not best for Samuel's condition or for babies with EVC in general.  Because we know him best.  We are the only ones who have been with him every day of his life.  We have seen how he has responded to every single change, good and bad.  We know what's worked in the past.  We know his little quirks that may not make sense medically.  We are his greatest advocates.  And that's hard.  It's exhausting.  But seeing Samuel make progress makes it all worth it!  Thankfully, some of the doctors here have helped in the communication with our team from Delaware.  We are so thankful that they are willing to collaborate!  And we are confident that this arrangement will continue allowing Samuel to get the best care possible.

It was very surreal coming back to ACH after 5 months.  As soon as we entered the hospital it was like we had never left.  These hallways are all too familiar.  But at the same time everything was so new and different.  We're in a different unit this time, with a new medical team, and new ways of doing things.  Now that we are back here, our time in Delaware already seems so long ago!  But while we were there it felt like we had been there for well over 5 months.  Needless to say, time is a funny thing!  But we are thankful that we are only 3 hours from home now, instead of half a country away.

Another exciting thing since arriving here is that a sweet friend of ours surprised us by designing a shirt for Samuel!  We are so excited to have a shirt to wear that will be a conversation starter to point others to the glory of God!  These shirts will also help to offset medical expenses and our day-to-day costs of living away from home.  If you would like to buy a shirt you can click on this link!

https://www.customink.com/fundraising/samuel-strong-shirts

I think you can only buy them through the end of this weekend, so don't delay if you would like to have one!

I cannot express in words how much each of y'all's prayers mean to us.  We know God hears each one, and He has continually provided us with strength along this journey!

Prayer Requests:

• Pray that Samuel's lungs would do well as they are challenged in new ways!
• Pray that the medical team here will have wisdom to know when to switch Samuel back to a home vent.
• Pray that collaboration between doctors will continue so that Samuel gets the specialized care that he needs.
• Pray that the peices for us to go home will all begin to fall into place.
• Pray that God will grant us all strength and rest.

Praises:

• Transport went just about as flawless as possible!
• We are now able to room-in with Samuel!
• Samuel has already made progress since being back at ACH!
• Samuel turned 6 months on Monday!  We are so thankful for these past 6 months!

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

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

-------------------------------------------------------------
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!