Wednesday, January 31, 2018

An Unexpected Hospital Stay...

A picture from the helicopter pad on top of UAMS
This has been our home for the past 2 days.  Needless to say, it has been a whirlwind!

Monday morning I started showing signs of pre-term labor, so my doctor had me come in for monitoring.  I am currently 30 weeks, so it is not an ideal time for our sweet Samuel David to make his appearance!  They tried several things to try to get the contractions to stop, but I was still progressing.  They started me on Magnesium, gave me the first in a series of steroid shots to help Samuel's lungs develop, and made the decision to fly me to UAMS in Little Rock, just in case Samuel decided to come sooner than anticipated.

Since being here my contractions have slowed way down, and I haven't been progressing as far as labor goes.  Huge praises!!!  We are praying that things will continue to stabilize so that we can be released soon.

The amniotic fluid level increased dramatically from our last appointment here on the 19th. The AFI went from 30, which is a moderate level of Polyhydramnios, to 48, which is very severe.  The doctors think that is what is causing the contractions, because my body thinks it is much further along than it actually is.  We are praying that the fluid levels will miraculously decrease!

We will try to keep y'all updated as we know more, and we are so grateful for all of you who are praying with us!

Here are some specific things to pray for:

  • Pray that the fluid around Samuel will decrease so that the contractions will stop and Samuel will have plenty more time to develop.
  • Pray that the doctors have wisdom in how to handle the situation.
  • Pray that we will be filled with peace as we are walking through so many unknowns.
  • Pray that we can be good witnesses to everyone we come in contact with.
  • Pray that God's glory will be revealed through all of this!
  • Things seem to be stabilizing for now!
  • Samuel's heart rate and activity have all been normal throughout this whole process!
  • We have so much family that was able to travel down and support us on our first couple of days here!
  • We have so many people in Little Rock who have offered to help us in whatever ways we need!

Again, we are so grateful for each of you who are praying, offering us support, and sharing Samuel's story with others.  This is by no means easy for us, but we are so blessed by the community that God has surrounded us with!

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

Thursday, January 25, 2018

The Promises of God - Certainty in the Midst of Uncertainty

Recently, I have been spending a lot of time searching the Scriptures and writing down promises - God's promises.

They are everywhere!

God promises His children peace, joy, strength, victory, provision, protection, everlasting life...the list could go on and on.  The best part?  We are assured that each of these promises is true and unchanging.  Each one will come to pass!

"The grass withers, the flower fades,
but the Word of our God will stand FOREVER."
Isaiah 40:8

So why do I allow myself to continue to fear, worry, and be anxious?  God's promises will not fail me, no matter what outcomes lie ahead.  At the end of the day - God.  He remains constant.

Here is one of my favorite passages that I have run across so far:

"You whom I took from the ends of the earth, and called from its farthest corners, saying to you,
'You are my servant, I have chosen you and not cast you off;
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;
it is I who say to you, 'FEAR NOT, I am the One who helps you.'"
Isaiah 41:9-10, 13

There are so many promises listed here!
  • God has chosen me!
  • He will not cast me off!
  • He will always be with me!
  • He is my God!
  • He will give me divine strength!
  • He will help me!
  • He will uphold me!
  • I have no need to fear!
These are promises that I am clinging to in the midst of the unknown.  In the midst of uncertainty, God is always certain, and His promises are true!

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

Saturday, January 20, 2018

Hard News

Our appointment yesterday was hard.

We got to see Samuel David's sweet little face again, which is always so special!

But we didn't get the news we were hoping for...

The follow-up echocardiogram confirmed the findings of the first one, but this time the cardiologist couldn't see any blood flowing through Samuel's very small aorta.
With the combination of things they see wrong with Samuel's heart, he has a condition called Hypoplastic Left Heart Syndrome (HLHS), which basically means that the entire left side of his heart is underdeveloped and will not be able to handle the flow of oxygenated blood to the rest of his body.
-His left ventricle is underdeveloped and too small.
-His aortic and mitral valves are underdeveloped.
-His aorta is very small and seems to be interrupted, which means that no blood can flow through.
-He has a Ventricular Septal Defect, which means there is a hole in the wall between the two lower chambers of his heart.
Normally they attempt to stabilize HLHS through a series of 3 major surgeries over the first 3 years of life.  However, these surgeries are all high-risk even when there are no other medical complications.  But Samuel has other complications as well...

Samuel's Skeletal Dysplasia appears to be keeping his chest from growing properly, which would restrict the growth of his lungs and heart.  If his lungs are not strong enough, he will not be able to tolerate surgery on his heart.
The Skeletal Dysplasia is also keeping his bones from developing properly.  However, they have grown since our last appointment!  Which is the one bit of good news we did get!  Praise God!!!
There is still no way to know whether the type of Skeletal Dysplasia he has is lethal or not.  That will have to be determined after he is born.

The extra fluid surrounding Samuel has increased again, putting me in the "moderate" range of Polyhydramnios, and again increasing the chance of pre-term labor.  We are praying that he will stay put for another 10 weeks so that he can have access to whatever medical care he ends up needing, and have the chance to safely develop for as long as possible.

The doctors we talked with yesterday didn't leave much room for hope, and it is so easy right now to let ourselves be overwhelmed by grief and defeat, but we are confident in the HOPE that God gives us:

"And we know that for those who love God all things work together for good, for those who are called according to His purpose."
Romans 8:28

"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

We are still praying for God to miraculously heal Samuel's heart, lungs, and body, but we know that He has a purpose in all of this whether or not we get the miracle that we want.  We are confident that God is working all of this together for our good, and for His glory; and we believe that He will carry to completion the work that He has begun in our precious Samuel David.

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

Friday, January 19, 2018

Perfect Peace

Be anxious for nothing...

Be anxious for nothing...

Be anxious for nothing...

These words have been running through my mind all week.  I know that God does not command anything that He does not also give us the ability to obey with His help, yet these words are so hard to put into practice.

I have had moments of anxiety this week, as we anticipate this next appointment. It is so easy for my human nature to fall into that. But I know that God's peace is so much greater, and I will choose to rest in Him, even when my flesh tells me otherwise.

"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

No matter the outcome, I know that God will get the glory, and I am praying that we will continually rest in His perfect peace.

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

Monday, January 15, 2018

Our Prayer Chest - A Place to Give Thanks

Continue steadfastly in prayer, being watchful in it with thanksgiving.

Colossians 4:2

In November, Seth and I ran across an old cedar chest at an antique shop, for a bargain of a price!  We had been looking for a cedar chest for quite some time, just to be used as a sitting place and storage space, but had been deterred by the high prices.  We were so excited to finally find one to put in our home!

We had no idea that God had a completely different reason for allowing us to find such a treasure that day.  Sometimes God grants us our wishes, however petty they may be, and turns them into something so much more wonderful than we ever could have imagined.

Two weeks after that cedar chest entered our home, we had our first appointment with an MFM specialist, and God gave us a vision for what our antique find truly was.

Our cedar chest has become our prayer altar.  It has become a sacred space where we have shed tears, shared laughs, and poured out our hearts to our loving Heavenly Father, while kneeling at His feet.  We have sung songs of praise and worship to our Creator while sitting on our prayer chest, and we have purposed together to learn more about how we are to pray.

The first thing I have learned?  We are called to give thanks.

There are multiple Scriptures where prayer is mentioned alongside thanksgiving.  So every night before bed, Seth and I kneel at our prayer chest and give thanks!  Do I always feel thankful?  No.  But disciplining myself to express specific points of thanksgiving to God every night has shown me just how much we have been blessed with.

We have a house.

We have food.

God chose us to be parents to 3 precious children.

We live close to family who have been a huge support over the past year.

Seth and I both have incredibly flexible and supportive jobs.

We have 2 working vehicles.

Samuel David is super active, and we are so grateful for all the time we get to spend with him.

All of the doctors we have met with have been compassionate and patient.

We are often overwhelmed with supernatural peace.

People we don't even know personally have offered us help in this season of life.

We have people around the world praying for us.

God has somehow strengthened our marriage in the midst of everything we have gone through.

I could go on…

Every time I start listing things, I am amazed!  How can I be anxious when I see all that God has already provided?  Am I really concerned that He won’t continue to give us everything we need?  Yes, this is so much easier said than done, but that is why I am disciplining myself to daily list what I am thankful for.  I am praying that this will become a habit that will allow God to continually calm my anxious heart.

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7

We cry out to God every single day to bring healing to Samuel, and we will continue to do so.  We would love the chance to raise our son, and we have full confidence that God has the power to reverse any medical diagnosis.  But I know that what we NEED is peace, because that is what is commanded of us in Scripture.

Regardless of the outcome God has planned, my prayer is that God will fill us with peace, and I am learning that thanksgiving is the first step.

Our prayer chest has quickly become my favorite place in our home.  Even though it’s not always easy to kneel and pray, I have come to treasure our time at the altar each night as Seth and I kneel side-by-side, voicing our gratitude to the One who provides, while giving all of our fears to the only One who can handle them.

Thank you to everyone who has been joining us at the feet of Jesus to petition for healing and peace!

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

Friday, January 5, 2018

The Power of a Name

I used to keep a notebook of names that I wanted to give all 20 of my kids one day.

No joke.

The first time I remember writing down names was when I was about 9, and I remember revisiting that list even in college.  I'm not even sure where all of the names came from.  I think some were from movies, others from books, some were Biblical, and a few were from people I met – all were names that I just enjoyed hearing.  Although some of the names on the list changed over time, there were always a few that were my favorite go-to names I just knew I would be naming my children one day.
Little did I know the journey that God would take us on.  I had no idea that naming my children would become one of the most special things I would ever do, and that those names would look nothing like the ones from my list.

At the beginning of February, we lost our first child at 6 weeks.  I had a desire to pick a name as a way to remember and to make that child seem more "real", but I had no idea how we would pick a name since we didn’t even know if it was a boy or a girl. I was in a place of such deep grief that I didn’t want to taint the memory of our child by labeling him or her with a meaningless name from a silly list I made years prior. The loss of our first child showed me the pettiness of my list, and I told Seth that I wanted all of our children to have meaningful names – I just didn’t know what that looked like yet.
Well the all-loving God who created our precious child already had a name picked out. The day after we lost our child, I was reading Genesis 32 as part of my devotions.  This is the chapter where Jacob wrestled with God, and God graciously allowed him to live, but not without a permanent reminder of who He is.  Jacob named that place Penuel, which means “Face of God”, because He had seen the face of God there.  We are absolutely confident that our precious Penuel has seen the face of God, and we cried out to Him that we would also see His face in the midst of our heartache.

Then at the end of April, when our second child stopped growing around 10 weeks, God again pointed us towards a name.  The season we were in seemed hopeless, full of grief and despair.  All of my dreams of having children, and the dreams I had for my children, seemed like they may never be fulfilled.  The word Seth and I clung to was HOPE.  When it felt like there was none, we caught glimmers of hope from God.  Not a certainty that our house would one day be filled with children, but an assurance that He would use our story for His glory.  We had an assurance that He would not leave us, no matter the pain we endured.  We named our baby Jahleel, because it means to “HOPE in God”, or to “wait for God” – both of which were very appropriate for the heartache we were walking through.  Without God, there would have been no hope during those early days of mourning Penuel and Jahleel.

Fast-forward to the beginning of November…We were 18 weeks into our 3rd pregnancy, and just a few days away from finding out whether God was giving us a boy or a girl!  I had tried not to think about which one I thought it might be, because I just wanted it to be a surprise without getting my hopes up either way.  But in the days leading up to the appointment, God kept bringing the name Samuel to my mind…And on November 6th, we found out it was a BOY!  But we also found out that day that there were some concerns with our sweet boy’s growth. His long bones were all measuring short, and we were being sent to see a specialist.  The news was heavy that day, but we really didn’t have much information.  We wouldn’t know if it was anything serious until our follow-up with the specialist.

Seth and I standing in the valley of Elah
On my drive home from that appointment, God brought to mind the Valley of Elah – where David fought Goliath.  This had been our favorite place that we visited when we went to Israel the year before.  Seth and I were never really able to explain why this was our favorite place, and many people who have been to Israel or live there thought that it was odd.  It’s not even an actual tourist site, but it was the most memorable for us.  When God brought it to mind that day, I thought about how David had faced what must have been a HUGE fear in that valley.  He took on a challenge that everyone else refused.  David was just a small boy, but he allowed God to use him for His glory, despite his physical incapability or any fear he might have had.  From what the doctor said, we knew our little boy could possibly be facing some great challenges in life, and we wanted him to have a strong name to back that up.  We wanted him to be encouraged to see those challenges as avenues for God’s glory to be revealed.

Overlooking the Valley of Elah from the remains of the Israelite camp
Samuel means “asked of God”.  We asked God to fulfill the longing of our hearts for a child, and He granted our petition!

"For this child I prayed, and the Lord has granted me my petition that I made to Him."
           ~1 Samuel 1:27

David means “beloved”.  Samuel David is our beloved son, and a beloved gift from God.

Not only did God again provide us with the name that He had picked for our child, but He also did it in His perfect timing.  I never thought that I would be one to name a baby months before they were actually in my arms, but how special it is to have a name for our little son!  We are able to pray for him by name!  And we are able to pass that name on to others so that they can do the same.

Thank you to those of you who are praying for our little Samuel David 💙

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

Wednesday, January 3, 2018

Medical Diagnosis

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 had an appointment in Little Rock 3 days after Christmas, where we learned just how severe some of Samuel's medical conditions are.  We were seen by a Maternal-Fetal Medicine specialist and a Pediatric Cardiologist who were both wonderful to work with.  I will detail below what we currently know, but there are still a lot of unknowns.  Also, bear with me as I am not a medical person, and am just trying my best to repeat what the doctors said!

Heart - One of the main concerns for Samuel right now is his heart.  There are 4 main concerns:
  1. The chambers on the left side of Samuel's heart are significantly smaller than the right side.  The left side is responsible for pumping oxygenated blood to the rest of the body, so once he starts breathing on his own after birth, the concern is that it won't be able to handle that responsibility.
  2. The Aorta is very small.  They were able to catch a few glimpses of blood flowing through the Aorta during the echocardiogram, but it was very hard to tell.  Right now the Aorta does not look big enough to be able to properly handle blood flow after birth.
  3. The Mitral Valve is very small.
  4. There are 2 holes in the muscular wall between the left and right sides of Samuel's heart.
This is a diagram of what a normal heart looks like.
This is a sketch of Samuel's heart.
Notice the size of the left ventricle, left atrium, and aorta

Lungs - Samuel's lungs look a little smaller than they should.  His heart to lung ratio is high, meaning that his lungs are proportionately smaller than his heart.  This is a big concern, especially with the condition of his heart.  If his lungs are not strong enough when he is born then an operation on his heart would be less likely to be successful.

Skeletal Dysplasia - Samuel appears to have some form of Skeletal Dysplasia, which is a disorder causing some of his bones to not grow properly.  There are over 300 different types of Skeletal Dysplasia; some are lethal and some are not.  The difficult part is that there is no way to know for sure what type Samuel has until he is born.  This means a lot of waiting and guessing in the meantime.  When they were last measured, all of his long bones (arms and legs) were measuring several weeks behind.  Although we probably won't know if the Skeletal Dysplasia Samuel has is lethal or not until after he is born, one big indicator is the development of the lungs.  If there is a bell-shape to the rib cage/abdomen area, that often indicates that the rib cage is restricting the growth of the lungs, and will likely continue to after birth.  Fortunately, the doctors do not currently see that bell-shape on our precious Samuel!  Praise God!  We are praying that the development of his lungs will continue to increase!

Polyhydramnios - This is a fancy word meaning that there is currently excess fluid surrounding Samuel.  This is commonly seen with Skeletal Dysplasia, so it is not a surprise to the doctors at this point.  However, it does put me at a higher risk for pre-term labor.  This obviously would not be favorable for Samuel, as he may already be facing the need for surgery, and the development of his lungs is a crucial factor in whether surgery will be effective.  Also, as of right now I will need to deliver Samuel in Little Rock so that he can have access to the medical care he needs, so going into early labor would complicate things quite a bit, since we live 3 hours away from Little Rock.

Brain - At an appointment in mid-December, the fluid measurements on Samuel's brain had been slightly above the borderline of what they should be.  However, at our last appointment the fluid had decreased to slightly below the borderline!  Another praise!  We are praying that these will continue to decrease and stay at a normal level.

Prayer Requests:
  1. Pray for the healing of Samuel's heart.
  2. Pray for the proper growth and development of Samuel's lungs.
  3. Pray for his rib cage to expand appropriately so it does not restrict the growth of his organs.
  4. Pray that the fluid surrounding Samuel would decrease to a normal level.
  5. Pray that I won't go into pre-term labor.
  6. Pray that the fluid on Samuel's brain would stay at a normal level.
  7. Pray that we will be able to give God the glory, no matter what happens with our precious Samuel David!
  8. Pray that Samuel's story would impact others!
  1. There is currently no indication of Samuel's rib cage restricting the growth of his organs!
  2. The fluid on Samuel's brain has decreased!
  3. God is surrounding us with people from around the world who are praying for Samuel!
  4. Despite all the emotions we are going through, Seth and I feel God's peace resting upon us!
We are so blessed by all of you who are praying with us.  We know that God is listening to every single prayer that is being offered up for Samuel David's life!
Although the details of Samuel's medical conditions are still up in the air, one thing we know for certain is that God is the one who has perfectly formed Samuel, and we know that He will continue that work to completion.  Samuel David is fearfully and wonderfully made in the image of his Creator!

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

Monday, January 1, 2018

Samuel David - Trusting God in a New Year

There are 2 things I have come to understand over the past year:
  • First, God did not intend for us to walk through the hardships of life alone.
  • Second, purpose can be found in all of life’s heartaches and trials.
Both of these are my reasons for starting this blog.
Over the course of the past year, Seth and I have endured the loss of 2 children, and are now facing the unknowns of our unborn son being diagnosed with multiple medical complications.  We don’t know how this story will unfold, but we know that God is the author.

But before we get into any details, I would like to introduce you to our precious son, Samuel David 💙

Despite what the doctors say, we know that he is absolutely perfect!
There is a lot of meaning behind Samuel’s name, which I will write about soon (stay tuned for more blog updates!), but we know this is the name God picked for our son.  We are so grateful that we can pray for him by name!

I want to invite each of you to walk this journey with us, because we can’t do it on our own.  We have no idea what the future holds, but we know who holds our future.  We hope that whatever happens with Samuel David’s life, God will use it to draw others to Himself, to offer hope and encouragement to those who need it, and to persuade others to be vulnerable in their struggles in order to experience the beauty of walking together in His strength.  Seth and I are choosing to find purpose in the lives of each of our children – Penuel, Jahleel, and Samuel David – in the midst of the unknown.

We are absolutely certain that God has written a story into little Samuel David’s life; and whether he gets to tell that story, or we are called to tell it for him, God will receive the glory!

I will post more details about Samuel’s condition in the days and weeks to come, but the short version is that Samuel is faced with a multitude of medical complications.  We were referred to specialists in Little Rock to continue to monitor his conditions, and will likely be making many more trips that way.

Please pray for the proper development of Samuel’s heart and lungs, for his growth, and for him to stay put until the appointed time.

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...