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.

Surprise!

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!

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!

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!

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!

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!

THEY HAVE CHANGED SAMUEL'S HEART DIAGNOSIS!!!

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!

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.

Praises:
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!

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!

Three More Weeks!

Countdowns and countups are my thing these days.  They help keep me sane as I can see how far we've come, and how close we're getting to the goal!

It's been 26 days since we first went to the hospital.

26 days since I've been home.

26 days of bed rest.

This is day 9 of hospital stay #2.

14 days total spent in the hospital so far.

It's been 7 days since my water broke, and still Samuel is hanging in there!

Today marks 34 weeks of pregnancy!

And the most anticipated, exciting, and nerve-wracking countdown...

Approximately 21 more days until we welcome Samuel David into this world!

The days since we first went into the hospital have been long. Most of the days have seemed to drag by. However, looking back on these numbers now, I can't believe it's already been 26 days!  And it's even less than that until we see our precious Samuel David face-to-face, and step into a new part of this journey!

Let me back up to where I left off in my last update, and explain why Samuel's expected arrival date has moved up.

The typical guideline for PPROM (Preterm Premature Rupture of Membranes) is to deliver the baby at 34 weeks, because 99% of otherwise healthy babies can survive at this point, and the risk of infection and still birth greatly increases.  As has been the case all throughout this pregnancy, our situation is a bit different.  Since Samuel is not "otherwise healthy", and at this point will require surgery at birth, the doctors need him to be as big and fully-developed as possible.  Because of this they are willing to give us 3 extra weeks!  Those 3 extra weeks will put us at 37 weeks, which is considered full-term because the heart and lungs are about as well developed as they can be.  This will allow Samuel to continue getting bigger, and allow his heart and lungs longer to develop, in order to give him the best possible chance.  They won't allow us to go past 37 weeks because the risk of infection and still birth 4 weeks after PPROM is too great.

While there hasn't been an official induction date scheduled yet, March 16th will be 37 weeks, so hopefully he will be born right around then!  It is still possible that I will go into labor before then, as 90% of women who experience PPROM go into labor within the first 2 weeks.  It is also possible that they will have to induce me sooner if they see signs of infection, or if Samuel seems to be in any kind of distress.

We are praying fervently against all of those things!

We have learned a few new things this week, after having a growth ultrasound and a doppler ultrasound (which looks at bloodflow):

1. Samuel's long bones are still measuring far behind.  At our growth ultrasound on January 19th they averaged 22 weeks, now they are averaging 24 weeks.  So they have grown some, but are now measuring about 10 weeks behind.
2. Other than Samuel's long bones, the rest of him is measuring small, but in the "normal" range of small!  This includes his head and chest!  So the doctors aren't quite as concerned anymore with his chest restricting the growth of his lungs.  That being said, it isn't really possible to assess lung development with an ultrasound, but going off of chest size, they should have enough room to develop.  I have also been through 2 rounds of steroid shots for Samuel's lungs, which typically they only give one round of steroids.  Perhaps God will use the additional doses to bring Samuel's lungs to maturity!  We just keep praying that we will hear a strong cry when he enters the world!
3. When they looked at Samuel's stomach during the doppler ultrasound, it appeared partially collapsed.  The doctor said they could have just caught it when it was completely empty, or it could mean that there is an obstruction somewhere in the GI tract.  An obstruction would actually explain the Polyhydramnios (extra fluid).  Typically babies swallow the amniotic fluid, process it, and then urinate it back out.  But if the GI tract is not working properly, the fluid will begin to build up around the baby because it is not being processed quick enough.  If this is the case with Samuel, then it will likely require surgery after he is born.
4. While they were looking at the brain, there was just a moment of increased blood-flow.  They're not sure what caused it, and said it could likely be nothing.  We are praying that it is nothing!

And here is an ironically unexpected praise!

We had been asking for prayers that the fluid levels would decrease, and that the contractions would stop.  With the leak in the amniotic sac, both of those things are happening!  My fluid level has dropped from the high 40s to 31, as of yesterday!  Anywhere from 5-25 is a normal range, so there is still some fluid that needs to go, but we are praying it will drop to that range and then level out.  The loss in extra fluid has also dramatically decreased the amount and intensity of my contractions!

God is working in mysterious ways, and seems to have used this unexpected event to answer some of our specific requests!

Thank you all for following along as God unfolds this story before our eyes, and thank you so much for joining us in lifting up prayers and praises for Samuel David!

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

Change of Plans...Yet Again!

If there's one thing we've figured out from this pregnancy, it's that some things in life just don't go as planned.  This pregnancy it seems that nothing has gone as planned! But we know that God remains in control, and His plan is perfect.

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.
     Isaiah 55:8-9

Seth and I had just been getting used to our routine in our home-away-from-home, and we were enjoying having a comfortable place of our own!  But sometimes God calls us out of our comfort to do greater things.

Early Thursday morning we decided we needed to come back to the hospital because of some bleeding and increased contractions that I was experiencing.  They admitted us to labor and delivery because I had dilated further than before and they wanted to closely monitor things and hopefully keep my body from progressing any further.  Thankfully, the contractions began to slow down some so they sent us to the Antepartum unit where we wouldn't have to be monitored so closely.  Things were looking up, and by Friday the doctors were saying that we would be able to go "home" in the morning as long as everything remained unchanged!
Coming into the hospital Thursday morning I had been so worried that Samuel was going to make his appearance that day.  We were praying that God would continue to allow him to grow to 39 weeks, and that we wouldn't have to stay long at the hospital.  This seemed like an answered prayer!
But God doesn't always work in the ways we want Him to - another lesson we have learned over and over again during this past year.

Early Saturday morning I woke up only to realize that my water had started leaking overnight.  We called the nurse in to confirm, and that started a whirlwind of activity.
They gave me oral antibiotics and started me on IV antibiotics in order to prevent any kind of infection.  Unfortunately since it was 5 in the morning and I hadn't eaten all night the antibiotics made me quite sick, which just added to the drama of the moment.  Several doctors came in to assess, and fortunately I still had not dilated beyond a 2, but my contractions had increased.  They did an ultrasound to see how much fluid Samuel still had, then they started me on another round of steroid shots for Samuel's lungs, and decided to send me back to labor and delivery for close monitoring.  It was a long morning/afternoon, but praise God, things eventually began to slow down again!  Although I was still leaking amniotic fluid, my contractions slowed way down, and Samuel's heart rate and movement looked great throughout the whole process!  Right before dinner time they decided I was stable and could go back to Antepartum, which was a very welcome change since I had to be on a clear liquid diet all day while in L&D!

Now things are just a waiting game, as they have been, but it seems now that the timeline may be a little shorter than we had hoped.
I had always heard that if your water breaks you have to deliver within 24 hours, so I was very emotional at first thinking this was it.  But praise God that is not always true!

Here is what we currently know based on the events from Saturday:
The doctors quickly explained that it was only a leak, and since I had extra fluid to begin with, Samuel still had enough for the time being.  However there is now risk of infection, so that is what they have to keep a close eye on.  Typically when someone's water breaks before 34 weeks, they will try to keep the baby in until 34 weeks as long as there is no sign of infection, because most babies born at the 34 week mark can survive with extra care.  However, since Samuel has added medical complications they are currently willing to let me go past the 34 week mark (which would be February 23rd) as long as there are no signs of infection, and assuming that it doesn't send my body into labor on it's own before then.
Because everything is much more high risk now, I will not be able to leave the hospital until Samuel is born.  So I will continue on bed rest here, hopefully for at least a couple more weeks.  Definitely not what we were wanting, but we are thankful we are in a place where we can get immediate care!

Sleepover in the hospital! Thankful for these 2 being by my side the past couple of days!

Things to pray for:

• That the leakage of fluid would slow down.
• That the antibiotics would be effective in keeping away any infections.
• That the steroids would help to mature Samuel's lungs more quickly.
• That the contractions would remain at a minimum, or even stop completely, and not cause early labor.
• That the doctors would have wisdom on when to deliver Samuel.
• That God would continue to touch Samuel's heart, lungs, and bones, and bring healing.
• That delivery would go smoothly whenever it does take place.
• That Seth and I would continue to feel the peace of God and surrender to Him every day.

Praise God with us because:

• Labor has now been prevented 3 times!
• Samuel still has plenty of fluid to safely develop for now!
• There are currently no signs of infection!
• Samuel has shown no signs of distress!
• Samuel is head down!
• We have a whole team of prayer warriors (you!) walking this journey with us and covering us with God's grace!

One thing that has not changed: we don't know how this story ends, but we are clinging to all that we know is true of God.

He has never forsaken us, and we will not forsake Him. As difficult as it's been to walk this road, we have seen His hand preparing the way for us throughout this whole journey!  And we have been so encouraged by many of you who have let us know you are praying for us, shared Samuel David's story with others, sent us notes of encouragement or encouraging songs to listen to, provided us with meals, or even come to visit us.  Each of those things means the world to us, and we are so thankful!

I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!
       Psalm 27:13-14

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

Even If...

It can be easy for me to put on a brave face for people, especially while sitting behind a computer screen.  And while everything that I have said on this blog is absolutely true, and I believe it with all of my heart, there are many hard days.

My heart is broken.

I am grieving.

No, we haven't lost our precious Samuel David, but I am finally ok admitting that I am grieving all the same.

I am grieving the joyful innocence of pregnancy that I have never known.

I am grieving the excitement of doctors visits that most people experience during pregnancy.

I am grieving what I thought our family would look like.

I am grieving the fact that I can't just put together a nursery, have a baby shower, or buy cute clothes without the thought in my head that Samuel may never use these things.

I am grieving the fact that all future plans are currently on hold while we wait to see what our lives are going to look like 2+ months from now.

I am grieving a life for my son that may never be.

Do I believe God can perform a miracle?

Yes!

In fact, I believe that He has already performed many.

Has the healing come yet?

Not to our eyes.

But even if we never see the healing in this life, we know that God will heal our son, and we will see him whole and healthy one day.

My heart yearns for that day to be 7 weeks from now when Samuel enters this world full-term, with a perfect heart, a strong set of lungs, and perfect proportions to his body.  I know that God can perform this miracle!  I know that this yearning of my heart is not too far-fetched!  I have no doubts in my mind about God's ability to do these things...

But He may decide not to.

Our prayer every single day since we first began walking this journey was that God would receive glory through Samuel David's life.  It may be that He receives the most glory by not performing the miracle in the way that we want Him to.

And we have to be ok with that.

But it won't lessen the grief.

Seth and I are living each day with the expectation that we will get the chance to raise Samuel!  We pray every night that Samuel will grow up to love and serve God, and ask that God will grant us wisdom as we raise Him!  When we ask for the healing of Samuel's heart, we pray that it would beat for God all the days of his life.  When we ask for the healing of Samuel's lungs, we pray that he will glorify God with every breath.  When we cry out to God for Samuel's life, we pray that his life will bring God glory above all else.

We pray in expectation!

We pray with hope!

But even if...

The song "Even If" by Kutless came on the other day, and I think the lyrics say it perfectly.  No matter how our story plays out, and even in the midst of the waiting, Seth and I are clinging to what we know is true of God.  It's a knowledge we have acquired throughout our lives.  His love and goodness do not depend on how He chooses to answer our prayers.

If Samuel lives a long, healthy life - God is good!

If Samuel is born with all of his current complications and is only with us a short time - God is still good!

He is always faithful.  He is unchanging.

No matter what my emotions are at any given moment, my knowledge of who God is will never change - and for that I am thankful.

I want to encourage you to listen to the song below, read through the lyrics, and know that whatever you might be going through - no matter how painful it may be - God is still God, and He remains faithful and good - ALWAYS.

So surrender your story, and allow Him to use it for His glory!

"Even If" by Kutless

Sometimes all we have to hold on to

Is what we know is true of who You are

So when the heartache hits like a hurricane

That could never change who You are

And we trust in who You are

Even if the healing doesn’t come

And life falls apart

And dreams are still undone

You are God You are good

Forever faithful One

Even if the healing

Even if the healing doesn’t come

Lord we know Your ways are not our ways

So we set our faith in who You are

Even though You reign high above us

You tenderly love us

We know Your heart

And we rest in who You are

Even if the healing doesn’t come

And life falls apart

And dreams are still undone

You are God You are good

Forever faithful One

Even if the healing

Even if the healing doesn’t come

You’re still the Great and Mighty One

We trust You always

You’re working all things for our good

We’ll sing your praise 

Even if the healing doesn’t come

And life falls apart

And dreams are still undone

You are God You are good

Forever faithful One

Even if the healing

Even if the healing doesn’t come

You are God and we will bless You

As the Good and Faithful One

You are God and we will bless You

Even if the healing doesn’t come

Even if the healing doesn’t come

A New Home Away From Home

It's been a few days now...but we were released from the hospital Friday evening!  Thankfully Samuel is still safely growing and developing, and we pray that he will continue to do so over the next 8 weeks, but our lives are going to look a little different while we wait for him to make his appearance.  While we no longer have to sleep on hospital beds/chairs, we also will not be sleeping in our own bed for quite some time.

Because of how much extra fluid is currently surrounding Samuel (severe Polyhydramnios), my uterus is already measuring well past-term.  This is causing my body to think that it's already time for Samuel to arrive, so it's likely that these frequent contractions I've been experiencing since last Sunday will continue until the time that Samuel is born.  We are praying that God will miraculously drop the fluid levels to a normal range, but as of now we are on high-alert for any signs that labor may be progressing.  This means that I will not be able to make the 3-hour trip home for the remainder of the pregnancy.  In fact, I am confined to the bed and couch, as the doctors have given me strict bed rest orders in hopes of keeping the contractions from increasing.  So Seth and I will be staying in Little Rock until Samuel makes his appearance, which hopefully won't be for another 8 weeks!  While that is a lot of time to be away from home, we are so thankful for each day that Samuel is given to continue safely growing in the womb.

It is difficult being so far away from home during this time.  We so greatly miss being close to friends and family.  But we have been so blessed already during our first week in Little Rock and we are so grateful for the caring, generous community that God has surrounded us with!

• A generous family is allowing us to stay in an apartment that they have built on their land!  It is such a blessing to have a place of our own as we wait, and a place to welcome visitors to keep us company.
• Seth's job is allowing him to work remotely for as long as we need to be down here!  So he will be able to stay in Little Rock with me the whole time.
• We have already had a few people bring/send us food, even before we left the hospital! This has been such a blessing, and takes a burden off of Seth as I am not allowed to cook or leave the house right now.
• So many people have contacted us to encourage us, and to let us know they are praying for us!
• We have had family making trips back and forth to support us during our hospital stay, and as we transition into our home away from home!

Even though we are 3 hours away from our main support system, God has been faithful to provide, and we are so grateful to each of you!

Here are some specific things we would love prayer for:

• Peace as we wait.  Being out of our normal routine and in a completely new environment leaves us with a lot of extra time to worry!  Pray that we will focus our minds on God, resting in His peace, and that He will draw us closer to Himself during this time.
• Patience and joy as we settle into a new normal.  A lot is being required of Seth right now, and it is hard for me to just lay down and watch as he cooks, cleans, and serves me in every way possible.  But I know that is what I need to do.
• Healing for Samuel David.  We don't know much more than what we knew from our last appointment on the 19th.  We will have another growth ultrasound on the 15th of this month to see how his chest and long bones are developing.  We did have one quick ultrasound during our hospital stay and were told that his chest is just above the 50th percentile, which is hopeful!  We do know that Samuel's heart rate and activity level during the 5 days in the hospital looked great!  He never showed any signs of distress!
• A decrease in the amniotic fluid surrounding Samuel.  The doctors seem to say it would take a miracle for it to decrease on its own, but we are praying to the One who can perform miracles!  A decrease in amniotic fluid would hopefully cause the contractions to stop, and lower my risk of going into labor too early.
• Physical comfort while on bed rest.  I am on day 8 of bed rest, and am very sore!  It is difficult to get into a comfortable position.  Pray that God will ease my discomfort and allow my body to rest as we wait for Samuel.
• Quality time with God and with each other.  Pray that Seth and I will be able to use this time away from our busy lives to strengthen our relationship with God and with each other.  Pray that I can be intentional in my activities as I am resting.

 

And now I have to give a shout out to my husband, who has jumped in to serve me without even hesitating.  He literally does everything for me, including refilling my water over and over again so that I won't stand up.  He helps lift me off the couch when my back and belly ache too much to move.  He is cooking and cleaning and shopping, all while I lay here completely dependent on him.  Not to mention he still has a job to do.  I always knew he was a servant, but he has done all of this without complaining, and I couldn't get through this without him!  I am so blessed that God gave this man to me, and I am so thankful that this is the man Samuel has to look up to!

On another note, if you have any verses or songs of encouragement, book recommendations, or any other good ideas to pass the time while keeping my mind focused on God, please send them my way!

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