Saturday, March 31, 2018

We made it safely to Deleware! Thank y'all for praying!
I wouldn't say that Samuel is the biggest fan of traveling...but he did about as well as could be expected! They are giving him a few days just to settle in and recover before any big decisions are made. He is a trooper!

After a long day of being apart, Seth and I are still spinning from how quickly everything happened. We are just so thankful that we are all here together now!

We are trying to get used to the new environment which is so different both medically and culturally. We are definitely not in the south anymore! We are grateful for God's clear leading to bring us to this place, and we are trusting that He will use it for His glory and our good.
Please continue to pray for us as we try to settle in here. Pray that God will give the doctors wisdom, and give us peace as we wait.

I wanted to get out this quick update so I don't leave y'all hanging!  But I will take time this weekend to write up the full story of what brought us here.  We are so thankful for all of your prayers, we know they made a difference!  As hard as it is to be so far away from family, we can see that God has gone before us every step of the way.

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

Wednesday, March 28, 2018

Urgent prayer request!

Urgent prayer request!

Earlier this week we made the decision to transport Samuel to the children's hospital in Deleware, where they have a specific team dedicated to working with kids who have EVC.  This was a hard decision for us because we have loved all of our doctors and nurses here at Arkansas Children's, and because transporting a baby that far always has some risks.  But after talking with doctors and praying for wisdom we decided it would be best for Samuel.  We found out yesterday that the transfer would for sure happen, but were told it likely wouldn't be until the end of this week and maybe not even until next week.


As soon as we got to the hospital this morning they informed us he was being transported TODAY! I  am currently riding in the ambulance with him to the airport because we are going to Deleware!
We are excited that God connected us with the doctors in Deleware, but we are anxious.

Please pray:
That Samuel will do well during transport!
That Seth will be able to make it to Deleware soon without any problems!
That the transition of Samuel's care will go smoothly, and God would give the transport team and the doctors wisdom!
That God will give us all comfort as we go even farther away from family and friends, and peace as we make this transition!

Sorry for the quick update!
Thank you all for praying!

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

Friday, March 23, 2018

The Strength We Need

On Wednesday Samuel had a CT scan of his heart, and we got those results yesterday.  We were praying to see another miracle!  Praying that the cardiologists would see a reconstructed aorta that wouldn't require surgery, just as God has already reconstructed the left chambers!

We didn't get that miracle.

Samuel's aorta still looks the same as they expected it to from his echocardiograms.  All of the cardiologists here agree that it is not large enough to support blood flow to the rest of his body, and it will need to be reconstructed with a major bypass surgery.  There are still a lot of decisions to be made regarding timelines and temporary fixes in the meantime, and Samuel's diagnosis of EVC complicates the decision making process.

But in the midst of this discouraging news, God also answered another prayer.
We were able to hold Samuel this week!!!
It had been 13 days since we were last able to hold him, and I can't describe how much good this does for our hearts.  God is faithful, even when we get news that we didn't want.  He is faithful to fill our hearts in other ways.  He is faithful to give us just what we need in order to get us through the hard times.  We know that He will not call us to walk through something without providing us with the necessary strength.  Moments like this help provide us with that strength.  We are so grateful for this blessing!
This is my comfort in my affliction, that Your promise gives me life.
Psalm 119:50
Thank you for continuing to pray with and for us.
This is His story, and it is all for His glory!

Monday, March 19, 2018

The Results Are In...and God is STILL Faithful!!!

After 4 long months of wondering and waiting, we finally have an official diagnosis.  In a way, this is such a relief!  Putting a name to it allows us to research.  It helps us to feel more informed.  It takes away the fear of facing something unknown.

But at the same time, the name that it has been given drives fear into our hearts.  Somehow it makes all of Samuel's medical problems seem more real.  It makes him seem more vulnerable.  It makes the road ahead seem so long...

This is the fancy paper that was given to us by the geneticist just a few days ago:

Six simple words quickly scribbled on a piece of scrap paper to tell us that our son has a very complicated diagnosis.  Ellis-Van Creveld Syndrome (EVC) is a rare form of skeletal dysplasia that is said to be lethal 30-50% of the time.  There are only a few hundred known cases in the world.  Samuel is one of those.  The 2 things that sometimes make EVC lethal are the narrow chest, which can restrict the growth and proper function of the lungs, and the fact that it is usually accompanied by some kind of heart defect.

Despite the daunting statistics and the many other things that accompany EVC, God has already shown Himself faithful even through this diagnosis!
Back in December when we were first told that Samuel had some form of skeletal dysplasia, I naturally started googling.  During that time I ran across numerous blogs, but there was only one that I continued following and went back to numerous times.  In God's divine providence, that blog just so happened to be written by a lady who has 2 daughters with the exact same rare diagnosis as Samuel.  I was able to reach out to her, and she put me in touch with a doctor who has worked a lot with EVC!  This is huge since EVC is so rare, because many doctors have never dealt with it before.  This doctor is now collaborating with our team of doctors here, and has also pulled in other doctors who have worked with EVC.  We know this "random" connection was ordained by God!

Tomorrow afternoon (Tuesday) at 2, our team of doctors here are going to be conferencing with several doctors who have dealt with EVC, and will be working to put together the best plan of care for Samuel.  Please be in prayer that God will give these doctors wisdom!

In the meantime, a HUGE step forward was made today, as Samuel was able to be taken off the oscillator!  This is a BIG deal because the cardiologists said they couldn't even discuss surgery for Samuel until he was off the oscillator.  So far he is doing great on the normal ventilator, and we are praying that his levels will continue to hold steady!

Please pray with us...
  • That we will get to hold Samuel again soon! It has been 12 days since we were last able to hold Samuel.  I can't describe how hard that has been...but now that he is off the oscillator we should be able to hold him soon, as long as he remains stable!
  • That Samuel will be able to maintain his levels while on the regular ventilator, and continue to improve!
  • That God will give the doctors wisdom as they meet tomorrow and begin to formulate a plan for Samuel.
  • That God will give the doctors wisdom as they discuss whether or not to begin feeding Samuel through his tube.
  • That God will continue to bring healing to Samuel's heart and lungs!

Praise God with us for...
  • Seeing Samuel's eyes!  Immediately after they took Samuel off the oscillator, he opened his eyes for over an hour! This was only about the sixth time we have seen his eyes, but the longest he had ever opened them before was only about 5 minutes!
  • Samuel coming off the oscillator!
  • Our 2 wonderful primary nurses who have loved on Samuel and put our minds at ease over and over again!
  • Connecting us with just the right people at just the right time!  Doctors, people here from NWA, other believers...God has been so good to put these people in our path!
This is His story, and it is all for His glory!

Sunday, March 11, 2018

The NICU Life

I had always heard that life in the NICU is a rollercoaster, but I never could have imagined how true that is.  These past 12 days have been full of ups and downs, and I'm sure there will be more to come.
If you read my last post, you know the miracle that God has already performed on Samuel's heart!  We are so grateful and in awe of God's power and answer to our prayers!  We learned this incredible news on Friday, and we we're overjoyed.  We never would have thought that we would almost lose our precious Samuel David less than 24 hours later.

Samuel's little knee pads that he gets to wear because he loves laying on his tummy!

Early Saturday morning Samuel had an episode where his oxygen levels kept dropping for more than an hour.  Eventually his heart rate started dropping too.  Samuel ended up coding.  They had to give him compressions to get his heart going again.  They adjusted all of his vent settings but Samuel was still struggling to keep his levels stable.  They switched him over to a new ventilator, did an echocardiogram and an ultrasound, and put an arterial line in his foot so they could do frequent blood draws to see if his blood gas would indicate anything.  Samuel was showing signs of pulmonary hypertension, and his carbon dioxide levels were pretty high.  They started him on nitric, and switched him to an oscillatory ventilator to help bring down his carbon dioxide levels.  They also had him heavily sedated so that he wouldn't fight the ventilator, but would allow it to do the work so that his body could use it's energy to recover from the events of the morning.  It was mid-afternoon by the time they made the switch to the final ventilator, but his oxygen levels stabilized after that!  His carbon dioxide levels also began to drop, and he was relaxed and peaceful for the first time in a while.

The new machine that sounds like a tractor!
Samuel is still heavily sedated and allowing the ventilator to do all of the work, but his carbon dioxide levels are in a good place, his oxygen levels haven't dropped at all since yesterday afternoon, and they are slowly turning down the vent settings.  His body seems to be recovering, and we are so grateful!  Right now they don't know exactly why all of this happened.  Their best guess is some kind of infection, so they are treating him with antibiotics while they wait for test results to see if there is anything there.

We covet your continued prayers during this time.  We are confident that God has a purpose in healing Samuel's heart, and we know that he is not done with him yet!

And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.
Philippians 1:6

“Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.”
Jeremiah 1:5

Please pray that Seth and I can find time to rest during these long, draining days and and nights.  Also pray that we would not get sick!  I can't imagine not being able to see Samuel for any length of time.

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

Saturday, March 10, 2018

Miracles Upon Miracles!

We have been blessed with 11 days.  11 incredible days of being face-to-face with our precious Samuel David.  11 days that we will cherish forever.  11 more days than we might have had.  We are so grateful to God for giving us these first 11 days, and we are trusting Him for many more!

This week has been quite a ride of ups and downs.  We have received some wonderful news and seen miracles unfold, but have also been plagued by sleepless nights and heart-stopping moments of fear.  Samuel often goes from sleeping peacefully, to rapidly losing oxygen, at the drop of a hat.  It is so hard to leave his side, especially not knowing when these episodes might happen.  In the moment it can feel like everything is hopeless, like we are losing him, like there is no way he will be able to recover...but then God reminds us that this story is so much bigger than ourselves.  Our fears and doubts aren't orchestrating this story.  God has bigger plans than we could ever imagine.  He is answering our prayers, and working miracles!
Fear not, for I am with you; be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
Isaiah 41:10

Miracle #1
Samuel has had 3 x-rays of his chest since being born.  In each successive x-ray, Samuel's lungs have looked clearer and more inflated!  The doctors have also said that, while his chest is smaller and a little abnormally shaped, it does not seem to be too small for proper growth!

Miracle #2
Samuel had an echocardiogram the day he was born, where the doctors confirmed his diagnosis of Hypoplastic Left Heart Syndrome (HLHS). This diagnosis requires 3 risky surgeries over the first 3 years of life that completely restructure the heart, and depends on a strong set of lungs.  The surgeons were not willing to do the first surgery for Samuel until he was 6-8 months old, due to his size and overall condition, when typically this surgery is performed in the first 3 weeks of life.  We were also told that they wanted to wait for the genetic testing to come back before making any final decisions.  Originally the results were supposed to be back within 3 weeks, but then that was changed to 8 weeks!  Which was very discouraging to hear.
On Thursday they did another echocardiogram to see if Samuel's heart might be causing the drops in oxygen, but what they found was something completely different! The cardiologists came by Friday morning to say that there have been changes in Samuel's heart since last week!


GOD has performed a MIRACLE, and answered a specific prayer that many of y'all have been praying with us!  Just since last week, the left side of Samuel's heart has increased in size!  It is still a little smaller than normal, but it is large enough to function as a normal heart should!  This means that Samuel does NOT have HLHS, and his heart will NOT have to be restructured into a single pumping chamber!
The only part of Samuel's heart that still looks too small is his aortic arch, which is why he has been on the heart medication since birth.  This will still require a major surgery, but it will just be to enlarge the aorta, rather than completely restructuring the heart.  This surgery will also be a more definitive fix, with a better possible outcome, if all goes well.  Because Samuel still has 2 holes in the wall between the 2 lower chambers of his heart (Ventricular Septal Defect), this surgery will also involve putting a PA band around the pulmonary artery in order to control the blood flow.

With the change in diagnosis also comes a change in the timeline.  Because this surgery will not depend so much on how strong Samuel's lungs are at the time, they will not need to wait for the genetic testing to come back, or wait near as long for his lungs to develop.  Right now they want to perform the surgery around the time of his actual due date (April 6th) which is 4 weeks away.

We believe that God can continue to heal his heart in the next 4 weeks!  Who knows what they may see on future echos!  But we are simply trusting that God will give the doctors and surgeons wisdom as they continue to make decisions, especially as the time for surgery gets closer.

For You formed my inward parts; You knitted me together in my mother's womb.
I praise You, for I am fearfully and wonderfully made.
Wonderful are Your works; my soul knows it very well.
My frame was not hidden from You, when I was being made in secret, intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
In Your book were written, every one of them, the days that were formed for me, when as yet there was none of them.
Psalm 139:13-16

We know that God controls the outcome.  He brought Samuel into existence from nothing, and He can continue to heal Samuel's body.  God knows exactly how many days Samuel has left on this earth, so worry and fear are useless.  There is nothing hidden from God, and we know that He is working all of this together for our good and His glory!

Please continue to pray with us:
  • For God to enlarge Samuel's aortic arch, and fill the holes between the lower chambers of his heart.
  • For Samuel's lungs to continue expanding and getting stronger.
  • For Samuel's oxygen levels to consistently stay in a good place, and for his agitation to decrease.
  • For Seth and I as we are physically and emotionally weary from this journey.  Pray that we can find rest, have endurance, and feel God's presence and peace.
  • For the doctors to have wisdom regarding surgery, treatments, and timelines.
Praise God with us:
  • For confounding the doctors by miraculously enlarging the left side of Samuel's heart!
  • For the growth and development that has already taken place in Samuel's lungs!
  • For His many provisions during our time away from home!
  • For all of the wonderful doctors and nurses that have worked with us so far!
This is His story, and it is all for His glory!

Sunday, March 4, 2018

Life on the Outside

Everything has been a whirlwind since Tuesday, when our lives changed forever.  Our emotions have been all over the place.  It is so easy to go from feeling hopeful to hopeless in just a short amount of time.  There have been many positives and answered prayers since we got to the NICU, but there have also been many hard moments.

The most special moment has definitely been when Seth and I were able to hold Samuel for the first time!  I was able to hold him for about an hour on Friday, and Seth was able to hold him on Saturday!  This was an answered prayer that our hearts needed.

There were no drastic changes to Samuel's diagnosis from what we knew before he was born.  His lungs are struggling to develop because they are crowded in his narrow chest.  However, we are praising God that they were strong enough to sustain him during his first few minutes of life, and that they were strong enough to let out a few little cries before they put him on the ventilator!

Samuel's Hypoplastic Left Heart Syndrome is a major concern.  The surgery they typically do for his heart condition is one that would turn his heart into a single pumping chamber.  However, this requires a strong set of lungs because they would then have the responsibility of pulling in all of the deoxygenated blood.  This poses a problem in Samuel's case, because his Skeletal Dysplasia has somewhat restricted the growth of his lungs due to his narrow ribcage.  The cardiologists want to wait for the results from the genetic testing to come back, which will take about 3 weeks, before they make a final decision about the surgery.  They are hoping the results will be able to give them some more information as far as what can be expected for Samuel's development.  This will also allow Samuel's lungs to have 3 more weeks to develop before facing surgery.  When he was born they immediately started him on a heart medication that should give him the 3 weeks they need to be able to wait on the test results.

On Thursday night, Samuel became very agitated and upset, which caused his oxygen levels to quickly plummet.  Five nurses rushed to his side, but it took a while to get him stabilized again.  It was such a scary moment, and I realized just how quickly we could lose our son.  Samuel had several more of those episodes throughout the night, and again on Friday and Saturday.  We are praying for peace and comfort for sweet Samuel.

On Thursday they put Samuel under a bili light because his levels were a little high, but by Saturday his levels had dropped enough that he no longer needed it!

Samuel David is rocking the shades!
We got to hold Samuel for the first time! (See pictures above)

While the x-rays have confirmed that Samuel's bones are short, the doctors said that they are strong, and not brittle!

There are so many things to be thankful for.  We have seen so many answered prayers already.  We know that each moment with Samuel is such a gift, and we are soaking them all in!  But please pray for Seth and I, as this journey is more painful at times than we ever could have imagined.  We are trusting God to give us the strength that we need.

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

Friday, March 2, 2018

He's Here!!!

Yet again our timeline was unexpectedly changed because...

Samuel David has arrived!!!

Holding Daddy's hand!
Samuel made his appearance early Tuesday morning, February 27th, at 0335.  He weighed in at 4lbs.13oz., and was 17.5in. long!  At just 34.5 weeks, that is bigger than we expected him to be!

Monday afternoon my slow leak of water suddenly became a rupture.  I lost all of the amniotic fluid, and my body very quickly went into labor.  Samuel stayed in the perfect position, tolerated labor well, and I was able to have him completely naturally!

As soon as he was born the doctor held him up for a brief second so I could see him, then immediately whisked him away to another room where they assessed him, intubated him, and gave him IVs, in order to prepare him for transport to Arkansas Children's Hospital.  Seth was able to stay with Samuel the whole time!

Being prepped for transport
All ready to head to the children's hospital. Seth was right by Samuel's side the whole time!
2 hours later, after they finished up, they brought Samuel back by my room so I could touch him in the incubator before they left.  It was heartbreaking to not be able to hold him and only get about 2 minutes with him before he was taken away, but we knew going into it that had to be the plan.

I was released from the hospital that evening around 6, and was finally able to join Seth and Samuel in the NICU at the children's hospital!

He is in stable condition, but it looks like he has a long road ahead of him.  He has already been through multiple ultrasounds, x-rays, and an echocardiogram.  He has his blood drawn multiple times every day through a UAC line (a tube inserted into his belly button).  He is on a ventilator since his lungs are small, and his chest is narrow.  He gets his nutrients through a PICC line.  He receives regular antibiotics...

As a mom it is beyond hard to see him laying there so helpless, with tubes, wires, and IVs everywhere.  I want him to know life beyond those things! I want him to know that life is not full of hospitals, and needles, and ventilators.  I want him to know what it feels like to be held.  I want him to hear the sound of his own cry.  I want him to know what it feels like to be comforted.
This momma's heart is aching...I am so beyond thankful that we have Samuel David here with us, but I have to ignore so many basic instincts.  When he cries, no sound comes out because of the ventilator, but he looks so sad and uncomfortable.  All I want to do is pick him up to console him, but I can't.  We have to be careful touching him too much, because if he is overstimulated his respiratory rate goes too high.  His little mouth will start making sucking motions and all I want to do is feed him.  I want his grandparents, aunts, uncles, cousins, and friends to be able to meet him, but because of flu restrictions Seth and I are the only ones allowed to see him.  I long to see his precious face free from tubes.  I long to hold his sweet little hands without worrying about IVs.  I long for so much more for his little life...

My eyes have been swollen from crying over the past few days...but my heart has also been filled beyond measure.  Oh, how we love this little guy!  We are so thankful for every second, every minute, every day that we get with our Samuel David.  Each one is a gift, each one is one more than we might have had, and we are not taking a single moment for granted.

I will write up a more detailed post about his medical condition and next steps soon, but I wanted to let each of you know that Samuel has arrived, and Seth and I are so thankful for all of the prayers that got him here.  We have already seen so many miracles throughout the pregnancy, his birth, and his short time here!

One of the things we had specifically prayed for every night was that we would hear him cry when he was born, and that would indicate strong lungs.  Well he didn't cry right when he came out, and they took him away so fast that I didn't hear him cry before they left the room, but Seth sent me a video from when they were preparing Samuel for transport - but before they put the breathing tube in - and it was the sweetest sound of our precious Samuel crying!
God answered that prayer!  And we know that He will continue to answer prayers as we walk this journey.

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...