Friday, June 29, 2018

By the Grace of God...We Have an Answer!!!

Samuel is out of surgery, and this is the reality of what it looks like.

It is so hard to see him so heavily sedated again, and it is so hard to watch him try to fight that sedation. It is hard to see him with fresh scars...

But the good news? The wonderfully joyous news that has had Seth and I in tears??

By the grace of God, the surgeon found an obstruction!!! Something fixable! Something that explains Samuel's bowel distention! It was so far down in Samuel's intestines that he said they never would have found it on a CT scan or with the contrast studies. His intestines had come apart at one point, and the two ends had sealed off. This is why the upper part of his intestines were so distended because there was no way for the gas to get out since it wasn't connected to the lower part of his intestines.

The surgeon said he has only seen something like this when a baby is born that way, but since Samuel's intestines seemed to work fine for the first 8 weeks of his life, he has no idea what would have caused this to occur later on. He said it was very "bizzare"!

The surgeon went ahead and performed an ileostomy because he couldn't connect the 2 parts of the intestines right now since the upper portion is so dilated, and the lower portion is much smaller. Lord willing, in 3 to 4 weeks they will be able to go back in and reconnect them!
In the meantime, we are praying that Samuel will rest and heal up well from this surgery, and be able to start feeds in a few days!

God's grace is so overwhelming! We will continue to praise Him on the hardest of days, and in the most joyous of moments!

Thank y'all for praying with us!!!

This continues to be His story, and it is ALL for His glory!

Another Surgery....TODAY

This little one here just melts my heart!

God has so graciously given us 122 days with this little fella! He's already 4 months old, and weighs over 11 pounds now! Which is quite the accomplishment for someone who started at just 4.5 lbs and has only been fed 11 days of his life!

But this little one here...

This same little heart is so broken for him. Because our precious Samuel David is not really okay. I know in my posts I can sometimes make it sound so simple, but it's not as easy as checking things off a list before they put us on a plane back to Arkansas. Samuel's condition is very complicated. His intestinal issues alone are enough to baffle doctors, but add on top of that one of the more difficult cases of an extremely rare syndrome that touches multiple systems of his body, his life-long heart defect, his chronic lung seems like every attempt they make to try to better one of these areas, seems to negatively effect another.  You never want to hear doctors apologize, but we have - over and over again. They've apologized for getting our hopes up. They've apologized for outcomes not being what they projected. They've apologized for "simple" procedures and surgeries causing issues they've never really seen before...
We are SO thankful for all of our doctors here, and we know they have provided the best care for our sweet boy!  But Samuel's body is full of complications, and it has been a rough road.

And now it seems that this rough road may require another surgery...
We thought Samuel's fourth surgery would be his next heart surgery (which is still up in the air as to when it needs to happen), but yesterday things changed.  Yesterday Samuel had a really hard day.  A day full of high heart rates, panicked breathing, a lot of extra sedation, another mystery fever, and an even-more-enlarged belly.  Samuel's belly increased another 2-4 cm in the past 3 days, and we know that it is making him uncomfortable.  It is also causing his lungs to require more support from the ventilator as they are pushed higher and higher in his small rib cage.

Yesterday they did another CT scan to see if they could find any clues as to why his belly is getting worse, but they (again) found nothing.  So we were presented with another surgery - a surgery that they are wanting to do TODAY.  It will likely happen later this afternoon.
The surgery they are wanting to do is one where they don't know what they will find.  At the very least, they should be able to temporarily decompress Samuel's intestines, which should provide him some relief.  But the best case scenario - the outcome we are praying for - is that they may find some kink or blockage that is fixable!  There may be some issue that is hidden behind his enlarged bowel loops, something that isn't showing up on the scans.

Over the past 20 hours we have prayed for wisdom - we have asked God to give peace if surgery today is the right step forward.  We feel like He has provided that peace.  We pray daily that God will give wisdom to the doctors as they guide us along this journey, and over the past 20 hours all of the doctors have come to the same conclusion about this surgery.

So we are planning to move forward.  We are planning to send our brave little warrior off to the OR this afternoon...again.  Hopefully this will bring Samuel one step closer to home.  We are praying for miraculous outcomes!
But at the same time it is so is so hard to send Samuel off to another surgery - especially when the outcomes of the surgery are so unknown.  We are praying that this surgery will provide Samuel with some relief so we can see more of his precious smiles!

Please join with us in praying!
We know that God has led us to this place.
We know that God is holding Samuel in His loving arms.
We know that God is not perplexed in the least by all of Samuel's medical complexities.
We know that God could heal Samuel in an instant.
We know that God works all things together for good.

We TRUST Him!  We trust His plan...

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

Saturday, June 23, 2018

Samuel's Favorite Things!

There are so many things that I could say about this week - from the highs to the lows.  This week looked a lot like last.  One thing I can say with confidence?  God continues to give us strength.

Strength for today.
Strength for tomorrow.

We could not walk this journey without Him!
I have found new meaning in the words of Nehemiah 8:10
"And do not be grieved, for the joy of the Lord is your strength."
The JOY of the LORD is my strength!

No matter how many difficult moments there are in a week, God always chooses to give us moments of JOY - moments we can cherish.  These moments are ones that could easily pass us by if we were to wallow in our grief, but God has graciously shown us how to embrace them instead.  And that is how He gives us strength to get through each day!  In the hardest of moments I cling to the good - I remember the joyous moments and remind myself that there will be more.  God promises more!
And the ransomed of the Lord shall return and come to Zion with singing; everlasting joy shall be upon their heads; they shall obtain gladness and joy, and sorrow and sighing shall flee away.
Isaiah 51:11
I don't have to see the fulfillment of my desire of having Samuel healed on earth in order to experience the joy that God promises.  But at the same time, we will continue to pray for miracles, because we know that God IS ABLE!

So today I hope to bring a little joy into each of your lives by showing pictures of a few of Samuel's favorite things!

Being cute! (he can't help this one)

His Daddy!

Blowing bubbles!

Being held!

Sitting up!

Being in his Rock 'n Play!


Therapy time with mommy and daddy!


His Boppy!

Making faces at dad!

Being irresistibly precious!

Nuzzles with mom!

Holding fingers!

Trying new things!

Tummy time!

His lion-flower rattle!

Being dressed in clothes!

Staring at his flying friends!

No, seriously.  He would stare at them ALL day if we let him.

Being serious

Being surrounded by ALL his animal friends!

Spending the evenings with Mommy and Daddy!
These are just a few of Samuel's favorite things!  He is definitely getting to a point where he lets us know what he likes and what he doesn't like!

Quick Update:
Samuel had a Bronchoscopy done on Friday, which showed that he has moderate Tracheomalacia, meaning that his airway partially collapses when he is upset.  This could explain the look of panic he has been getting when he gets upset, and why it has been taking him so long to calm down.  It also showed that he has some extra room, so he could probably benefit from a longer trach.  It could take up to 2 weeks to get the custom size that he needs, so until then we are waiting while we try to keep Samuel as comfortable as possible.  We are praying that the custom trach will keep his episodes from happening!

So we have at least 2 extra weeks here in Delaware.  In those 2 weeks, the doctors are also going to continue monitoring Samuel's heart to see if the coarctation of his aorta is getting any worse.  Ideally, if the aorta is going to require surgery to remove scar tissue, they would like to do it at the same time that they remove his PA bands - and they want to push that surgery off as long as possible.  We are praying that they will be able to get a better idea of timing in these next 2 weeks so that they will have wisdom to know whether or not it is best for us to head back to Arkansas before Samuel's next heart surgery.

We are confident that God will provide wisdom through some avenue, as He has so faithfully done with every decision on this journey!
In the meantime we sit back and laugh, because every time the doctors mention "home" Samuel has another surprise up his sleeve!
But really we know that this is all from God :)

As we always say...
This is His story, and it is ALL for His glory!

Tuesday, June 19, 2018

Quick Update

Just a quick update because we still don't know much...

Samuel's cardiac cath procedure yesterday didn't go as planned.

The balloon procedure to break up the scar tissue in Samuel's aorta was not successful. The area of the aorta that has narrowed due to scar tissue is much larger than they thought, and the balloon doesn't work well on such large areas. We don't know yet what the next step is in order to reverse this narrowing.
We are praying that God will give the doctors wisdom as they decide on next steps, and we are continuing to pray for God's miraculous healing in Samuel's heart!

We haven't heard from the doctors yet regarding the pressures and oxygen levels, so we don't know anything yet as far as how the bands and VSDs are doing.
We are praying for good news from this!

One praise we do have...
They put the catheter into the artery in Samuel's right leg, and one of the low risks that they have to tell you about is that the artery could close off permanently.  When Samuel came back from the procedure he didn't have a pulse in his right leg. They said it could just be spasming and return in a few hours, or the artery may be permanently closed off.  Well overnight they were able to start picking the pulse up on the doppler, and this morning the pusle in his right leg is almost back to normal!  We are praising God for this!

We didn't really get the news that we were hoping for, but God is still here, ever-present. We fully believe that God knows the exact number of Samuel's days, just as he does for each of us. We will continue to cherish each moment with our brave Samuel David as we pray for healing and wisdom.

But above all, this is ultimately His story, and it is all for His glory.

You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord  God is an everlasting rock.
Isaiah 26:3‭-‬4

Monday, June 18, 2018

Cardiac Cath

Samuel's days have been back and forth since Thursday.
There have been some not-so-good moments - such as Friday night when we stayed at the hospital until 1 am because sweet Samuel's body was struggling to settle down.
There have also been scary moments - like when Samuel dislodged his trach and we heard him audibly cry (my first time to ever hear that in person!), which unfortunately isn't a good thing.  We were very thankful for having a quick-acting medical team at that moment!  And thankful that Samuel recovered well from that incident.
In the midst of it all, God also blessed us with some amazing memories that we will cherish - such as Sunday afternoon when Samuel happily laid in Daddy's arms for 3 hours and gave us lots of smiles!

They think that these episodes are being caused by discomfort Samuel is experiencing.  His belly has been moving a lot, and we think he has been passing some gas (which seems like a good sign!), so he is probably experiencing gas pains.  His trach site is likely sore as well, and may be cause for irritation.  Once he gets himself worked up, he has a hard time bringing his heart rate and respiratory rate back to his baseline, although this seems to have gotten a little better over the weekend.

Samuel is enjoying being able to sit up!
He is learning to move his head back and forth all on his own!
So we continue on our roller coaster ride, keeping our hands up in praise to our great God who has graciously given us another weekend with Samuel!  We know that every day is one day closer to home.  And we continue to experience God strengthening us when we feel too weary to move on.

Today Samuel is scheduled to have a cardiac catheterization.
This procedure will serve two purposes.  First, it will allow them to measure things like pressure and oxygen levels in Samuel's heart.  This will give the medical team a better idea of the time frame for Samuel's next heart surgery.  They are hoping that it won't be until he's 9-12 months old at the earliest, but they want to make sure that it's not imminent before sending us back to Arkansas.  The second thing this will allow them to do is check for scar tissue in the aorta.  It is not uncommon for scar tissue to form where they patched the aorta during Samuel's heart surgery, and the last echo they did seemed to indicate that there was a mild narrowing of the aorta probably due to scar tissue.  If they determine today that there is scar tissue they can use a balloon to break it up, and 80% of the time it won't present any more problems.

Please pray:

  • For Samuel to do well with the procedure today!  He is not usually a big fan of "field trips".
  • That if there is any scar tissue, they will be able to break it up and it won't cause any more narrowing.
  • That the bands on Samuel's pulmonary arteries will continue to serve their purpose well for quite some time so that Samuel can wait as long as possible for his next heart surgery.
  • That there won't be any complications from the procedure today.
  • For Samuel to be able to rest well, without pain or discomfort.
  • For Samuel's surgery sites to continue healing well, without infection, and that they won't cause him discomfort.
  • That Samuel won't require extra sedation, and that they will be able to get back to weaning his scheduled sedation, which will hopefully help his gut motility.
  • That God will continue to give wisdom to the entire medical team as they decide what is best for Samuel.
Praise God:
  • For 16 weeks (tomorrow) with our precious Samuel David!
  • For the gift of sweet memories that we get to share!
  • That we are able to hold Samuel (almost) every day!
  • That Samuel did really well with his therapy session today after missing out most of last week due to discomfort!
  • For the blessing of being able to stay in the Ronald McDonald House this whole time!
  • For God's continued provisions!
  • For new friends we have made while in Delaware!
This is His story, and it is all for His glory!

Thursday, June 14, 2018

Up and Down and Up and...

We often feel like we're on a roller coaster ride, blindfolded, never knowing when a drop is coming or when we might reach a joyful peak.  We find ourselves way up high with great news one day, only to be quickly plunged back down to the reality that our precious son - Samuel David - is a very sick boy.  Then another high comes!  And we almost forget again.  We almost can't even remember how hard the day before was.  But we do.  The lows always come back to remind us.  That reality is always there, waiting to draw us back in again.

On Sunday, Samuel had a wonderful day!  It was the first day post-surgery #3 that he didn't need any extra sedation!  He was awake much of the day, which was fun because my parents were in town for a few days, so they got to see his eyes a lot!

We were greatly encouraged that Samuel seemed to be so much more comfortable with his trach than he ever was with the tube being in his mouth or nose.
Arkansas seemed like it may be just around the corner!

Then Monday came...

Monday was one of the hardest days Samuel has had over the past 11 weeks in Delaware.  We still don't know exactly why, but Samuel was inconsolable for most of the day.  When we arrived early Monday morning Samuel seemed to be doing well!  They had the echo machine by his bedside and were just waiting for the right people to get an echocardiogram.  Samuel's eyes were wide open so Seth and I began to talk to him and play with him.  But about 5 minutes into our joy-filled morning Samuel suddenly began to scream - his silent, heart-wrenching ventilator scream - and contort his body.  Usually Seth and I are able to calm Samuel down when he does this - he loves being patted, and having his head rubbed, and hearing our voices - but that morning was different.  Samuel would not calm down for anything.  His heart rate was racing close to 200, and his breathing was spiraling out of control, so they gave him some fast-acting sedation in order to bring down his numbers and to keep him still for the echo.  About 5 minutes after the echo was finished, the cycle started over again - Samuel woke up happy, very suddenly began to scream, became inconsolable, then fell asleep from exhaustion and sedation.  This cycle repeated itself all morning, and into the afternoon.  They kept giving him extra sedation as his heart rate and respiratory rate would rise, and at one point he had a fever, so they took cultures to check for infection - which ended up being negative.
They went ahead with the first trach change, which was scheduled for that day.  Ironically, Samuel woke up when they flipped him on his back for this, and he calmly looked around the whole time, then as soon as they left he became inconsolable again.  Finally, around mid-afternoon - whether from feeling better or from pure exhaustion - Samuel began to sleep much more comfortably and no longer had a temperature.
It was so hard on Seth and I as parents not being able to console our son.  It broke our hearts knowing that he was in pain and nothing we were doing was helping him.  Some days this is the reality.

But then Tuesday came...a day of FIRSTS!  I cannot adequately describe in words how completely opposite this day was from Monday.  I know God gave us this day to help us recover emotionally from the valley!
When we walked in Tuesday morning Samuel was wide awake and all smiles!  BIG smiles!  We were able to talk with him and play with him and he just kept on smiling at us!

PT and OT stopped by to re-evaluate him since he can now be more mobile with the trach, and he was having such a good morning that they tried holding him in an upright sitting position for the first time ever!  He has always had to be laid flat on his back or side up until now.

He LOVED it!  He was even turning his head a little from side to side as he heard different voices, which he is allowed to do now!  Before we always had to make sure he held his head still, but now we can encourage him to use his neck muscles!

Then they placed Samuel in my arms for the first time since his last surgery, and he didn't cry once.  He didn't even mind as the nurses transitioned him from the bed into my arms, which usually makes him a little fussy at first.

To top off the excitement of the morning, Samuel graduated from his little warmer bed to a big boy crib!

This means that he has grown a lot, because he was outgrowing the little warmer, and also that he is now able to maintain his own body temperature!

Seth also got to hold Samuel that afternoon, which they both enjoyed.

Yes, Tuesday was a joy-filled gift from God.  It melted away the worry from Monday.  It reminded us of God's great love for us, and that he loves to give us good gifts!

Then came Wednesday...a day that held some excitement!  Samuel was dressed in clothes for the first time ever!  He has always had so many tubes, wires, monitors, IVs, incisions, etc...that it is too hard to access everything with clothes.  But he has gotten rid of some of those things, and now that he has a stable airway with the trach, clothes are now an option!
As if he wasn't already adorable enough!

And thanks to his big Lasix diapers that he's known for, he went through not one...

Not two...

But three different outfits on day number one of clothes.  Since we only have 4 outfits that can work with his trach, central line, and other wires, it looks like we're going to be doing laundry every day to keep this cutie in style!  But he is so worth it.

Another milestone on Wednesday?  Samuel's first time sucking on a pacifier without gagging!

Because he's always had the big breathing tube running down his throat through either his mouth or nose, the sucking motion has always triggered Samuel's gag reflex.  But now that there isn't a tube in the back of his throat he actually did some sucking on his pacifier!

But Wednesday was also a little concerning...Samuel had a few episodes where his heart rate was very high, even when he was in a deep sleep.  The only way they could get it down was by giving him morphine.  We prayed that it was nothing.  We prayed that the milestones of that day would outweigh whatever was causing those couple of episodes.

That brings us to today...Thursday.  Today looks a lot like Monday.  And it's hard to accept.  We are blindly riding the roller coaster, and no matter how many times we come back down into the valleys, we always think there couldn't possibly be any worse valleys when we're up on the top.  On Tuesday, in the midst of our joy from seeing all the milestones Samuel passed, we thought surely it was smooth sailing back to Arkansas.  We didn't see the drop up ahead.
This morning we got to the hospital to find a very upset Samuel, with a very high heart rate and respiratory rate.  He also developed a fever throughout the course of the morning.  While morphine had helped bring everything under control on Monday and Wednesday, it wasn't helping today.  Samuel's heart rate didn't come below 170 even when he was sound asleep, and his respiratory rate didn't drop below 70, until 3 this afternoon.  They have again sent cultures to the lab, and this time they have started Samuel on antibiotics, because their best guess is an infection.
From down here in this valley, the next peak on this roller coaster looks so far away.  Just like every time we dip down, it feels like this time maybe we won't have enough momentum to go back up.  Our brave Samuel David has fought so hard, and his body is having to put in a lot of effort right now to keep everything functioning.

Please pray for him.

Pray for rest for his weary body.

Pray against any infection that may be in his body.

Pray for comfort and peace to surround him.

Pray for healing...
   - for his intestines
   - for his lungs
   - for his heart, which has developed some scar tissue
   - for his trach site, which is causing him some discomfort as it heals

This is His story, and it is all for His glory....
   even when it hurts

Friday, June 8, 2018

100 Days

Yesterday we celebrated 100 days of life for our sweet Samuel David!

100 days of sitting by his bedside in the hospital for 12+ hours a day.
100 days of unknowns.
100 days spent side-by-side with my family.

Samuel has changed and gone through a lot in those 100 days!

Day 1

Day 100
He lost a bit of hair, but gained a lot of chub.
He moved halfway across the country.
He kept us on our toes through the first 6 weeks of sleepless nights, when we knew that we could lose him at any moment.
He endured a heart-makeover like a brave warrior.
He overcame 3 surgeries like a champ.
He has made medical lingo become second nature to us.
He has taught us how to trust God when life hurts.
He stole our hearts from the very first day.

God has been so gracious to grant us these first 100 days with our brave little warrior!

Samuel's surgery on Wednesday went fairly well.  They had a little trouble getting his central line (Broviac) placed, and they almost had to just give him another PICC, but they were finally successful in putting it in a different location!  Because they had so much trouble with this, the time of the surgery ended up doubling from the expected 2 hours, and took 4 hours instead.  But the tracheostomy portion went very smoothly!
They are keeping Samuel more sedated through the weekend while the stoma heals.  On Monday surgery will do his first trach change, and then his airway will be considered "stable", at which point he will be able to become much more mobile!  He has been resting very comfortably since the surgery, and we just can't stop staring at his tape-free face - the first time we've ever seen his cheeks!

Please continue to pray for:

  • Samuel's intestines - nothing has changed here.  We are still praying that God would return normal function so he can begin eating again.
  • Samuel's lungs - long-term ventilatory support can have damaging effects on the lungs.  We are praying protection over Samuel's lungs while he is on the ventilator, and asking God to instead use this time to heal and strengthen his lungs!
  • Timeline - pray that God will guide the doctors as they decide when it is best for us to transfer back to Arkansas Children's Hospital.  While we are anxious to get closer to home, we don't want to rush things before Samuel is ready.
This is His story and it is all for His glory!

Tuesday, June 5, 2018

Surgery #3

On Thursday we had a meeting with Samuel's 2 EVC cardiologists, his GI doctor, and the GI surgeon who did his G-Tube and Nissen Fundoplication.  This meeting brought a new direction to the table, as we were faced with another rare and unexplained diagnosis.

By process of elimination, Samuel has been diagnosed with Intestinal Pseudo-Obstruction, which kind of puts a fancy name to "we don't know what's wrong".  After a slew of tests, procedures, and medications, the doctors have not been able to find any obstructions in Samuel's intestines, while also ruling out some of the most common GI-related diseases that people are often treated for.  This leaves the reality that Samuel's intestines are acting like there is an obstruction, even though no actual obstruction is present (hence the name, Pseudo-Obstruction).  This is complicated by the fact that Samuel has EVC, which has never been known to be paired with GI complications.  The worst part about this diagnosis is that there really aren't any treatments because the underlying cause is unknown.  Prior to this diagnosis the GI surgeon thought Samuel might benefit from an ileostomy, but now they believe that surgery could do more harm than good.  They have tried several medications that usually encourage motility, but even those have produced no results.  According to the doctors, the only thing we can do for his intestines is wait for them to start moving again.  It could be days, weeks, months, a year...they don't even have a guess at this point.  So far there are no indications that Samuel's intestines will be back to normal soon.  There have been times where we thought maybe there were signs that motility was returning, but, if anything, things have gotten worse.  Samuel's girth has slowly been creeping up over the last several weeks from 33 cm to 42.5 cm.  His bowel loops have become increasingly distended as more and more air fills them without any escaping.

So we wait...
We wait for God to return normal motility to Samuel's intestines.

In the meantime, the doctors have said there is really no point in us waiting in Delaware, so far from home, so we have put in place a plan that, Lord willing, will allow us to make it back to Arkansas "soon".

While we wait, Samuel will have to remain on the ventilator due to the competition his distended abdomen is putting on his lungs.  Samuel will also not be able to eat during this time, since nothing can pass through his intestines.  So we had to make some decisions for long-term care.  Tomorrow (Wednesday) morning at 9 am EST (8 am Arkansas time), Samuel will be having his 3rd surgery - a tracheostomy and a central line placement. 
Having a trach will allow Samuel to get the ventilatory support that he needs, without the negative effects of being nasally or orally intubated long-term (countless re-taping jobs on his face, very few cuddles with Mom and Dad, keeping him on sedation meds so he doesn't pull out his tube, risk of permanent damage to the voicebox, etc...).

We will finally see his face free of tubes and tape for the first time ever!  After 99 days, I am so ready...
We will be able to give Samuel so many more cuddles with his "stable" airway! No more waiting for our nurse to get the doctors permission and then gather a team to help get Samuel safely out of bed.
Samuel will be allowed to move his head for the first time on his own!  He will be able to get in so many more positions, and have the opportunity to develop skills like a normal baby!

The central line that will be placed in his chest will allow for easy long-term access for his IV nutrition that he will be dependent on until his intestines begin to work.

It may still be several weeks after this surgery before we are able to transfer back to Arkansas Children's Hospital, and probably at least a month or two after that before we can go HOME, but this will get us one step closer.  And hopefully within that time, Samuel's intestines may begin to function again.

Please be in prayer for Samuel as he goes into this surgery.  Although this is a fairly "routine" surgery, the last "routine" surgery we put Samuel through ended up revealing a whole other set of problems...which is why we are at this point.

  • Pray that God will guide the surgeons' hands.
  • Pray that Samuel's body will respond well.
  • Pray that the trach will allow Samuel to be more comfortable.
  • Pray that God would allow normal motility to return to Samuel's intestines.
  • Pray that God would continue to grant wisdom to the doctors, Seth, and I as we make decisions.

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

2 BIG Updates!!!

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