Update on Baby Boy: Week 24

It’s been a rough week in our home. Sickness invaded on Tuesday. 

By Wednesday, I wound up in the ER needing fluids. They did all the necessary blood tests for flu, strep, and other things, but they all came back negative. 

Curse it. It was the good old stomach flu. 

Thankfully, my parents were still in town and graciously decided to stay a few extra days to take care of all the sickies, plus entertain Madelyn and keep her far, far away from all the junk. 

We're finally coming out of it.

Despite the illness, we made our way down to Jackson yesterday for our weekly appointment. I’m not sure if it was the illness talking, the lack of sleep, or the actual reality of the situation, but the appointment was a little more dreary than normal—if that’s even possible.

After the weekly ultrasound, we met with Dr. Morris. Here's the rundown:

• Joel is still stable (and moving around like a Mighty Man), and his heartbeat was a strong 154. However, he still has “impressive” fluid all over him, and the most “progressive” is in his little head, between his skull and scalp. You can see it very clearly on the ultrasound.

• Because I’m 24 weeks now, we’ve reached a sort of milestone. It’s the point when a healthy baby can potentially survive outside the womb with the help of intervention. But we have a sick baby, so that’s not an option at this point. 

• Dr. Morris made a plan for what the next few weeks/months could look like:

– By 28 weeks, if Joel’s condition has worsened, we’ll schedule a C-section for that time. 

– By 28 weeks, if his condition is still stable, we'll “extend the pregnancy” to 32 weeks.

– By 32 weeks, if his condition is still stable, we’ll schedule a C-section immediately, which will be the optimal time to give him a chance of survival. (Dr. Morris doesn’t want him to go past this point if he’s still in his current condition.)

– By 32 weeks, if his condition has gotten better, we’ll “extend the pregnancy” week by week until there’s a more optimal time for delivery and survival outside the womb.

• At some point before delivery, they’ll be administering steroids to Joel to boost his lungs so he can potentially breathe on his own outside the womb. They may also do a thoracentesis right before delivery to drain some of the fluid from his lungs, which will aid the pediatricians and neonatologists in helping him once he’s delivered.

That’s pretty much all we know—medically-speaking—at this point. 

We’re living in such uncertainty right now. Our “plan” has to be flexible. But let's be real. We know that their “plan” will ultimately fall under God’s perfect plan for Joel's arrival and survival.

Before we left the appointment yesterday, Dr. Morris said, and I quote, “I don’t have a pill, medicine, or crystal ball to make this go away. Literally, all we can do at this point is pray.”

We readily assured her we have a host of people praying with us right now, asking for a complete miracle. We’ve known all along that God is the Great Healer and will be the one to change the outcome of this if it’s His will.

We know some people may hear us and think: Slow your roll. Aren't you getting a little too over-confident with all this miracle business? Maybe you need to think a little more realistically and logically about this situation.

I hear you. I really do. We don't discount the logic and realism of the situation. But we just whole-heartedly believe more in a God of outlandish, crazy, radical, how-did-that-happen miracles. 

We HAVE to in this situation.

It doesn’t mean we aren’t so very sad. We don’t want to see our boy sick in any way. We don’t want to see him fight for his life. We don’t want to see him suffer. In our humanity, we want to try and control every aspect of this situation. But we can't.

Jesus is ALL we've got.

Regardless of the outcome, we’ll fall on our faces and praise Him. His character and majesty won’t change for us. 

Since we married 2.5 years ago, our family motto has been: He's good. He's faithful. He's for us. And we still firmly hang our hats on that.

We’ve also reminded each other, over and over this past week, that God is the one who created and crafted this little boy. He can see into the dark places where doctors and ultrasounds can’t. He intricately knows what’s happening and what will happen in the days and months ahead.

So we trust Him and His ways.

Throughout this journey, Nathan and I have committed to memorizing scripture each week. Last week, it was this:

Count it all joy, my brothers and sisters, 

when you meet trials of various kinds, 

for you know that the testing 

of your faith produces steadfastness. 

And let steadfastness have its full effect, 

so that you may be perfect and complete, 

lacking in nothing.

—James 1:2-4

Every day, we’re doing our best to count it ALL joy and remain steadfast—or fixed in place. It's not always easy, but we're giving it all we've got.

Update on Baby Boy: Week 23

We were "highly encouraged" by the doctor not to leave the state for Christmas, to stick close to Jackson in case something happened. 

We were supposed to travel to Oklahoma and Texas to be with my family this year. But when I told them the news, they didn't even blink. They changed all their plans and said, "We're coming to you."

My brother, sis-in-law, and their two precious kiddos sprinted to The Sip. And Papa Santa and Grammy Claus filled their Ford F-150 (uh-hem...sleigh) to the brim with food, gifts, treats, and luggage, following close behind.

Oh, how we needed them here. Our house wasn't one filled with sorrow or mourning or discouragement. It was completely full of joy and peace and laughter. Just what we needed.

These precious people loved us to the MAX and prayed over us and supported us. Their physical presence was one of the greatest gifts I received during this holiday season.

Since the Maternal Fetal Medical Center was closed in Jackson this week, we got to see our regular OB here at home. In and out in one hour. Routine ultrasound and check-in with Dr. Griffin. 

She was SUCH a huge encouragement for us. Our kiddo has touched hearts all over the place. The P&S office heard about his story and many have been praying for him and asking about him.

Baby Joel looked stable. Still full of fluid, but kicking away with a strong-as-ever heartbeat. It's something to be grateful for. We'll take it.

He's Got a Name

We didn't plan it this way, but God has led us to a name for our son.

Most of you know that Nathan and I like to wait to give our babies names until we see them in person. It was a little frustrating for me, when we were first pregnant with Madelyn, but Nathan really wanted to wait to meet her. 

Then, after we did it and both realized, out of the names we’d picked, she was indeed a Madelyn, I grew to love the idea of waiting! Her name is so fitting for her and the meaning is so powerful for who she is. She's definitely a "strong, high tower" and "full of grace."

Also, many of you probably know there's a name that's been in the running for our son—at the top of the list—for quite some time: Deacon. It means “messenger” or “servant.” 

But God recently spoke to both of us and said He has other plans for this little boy growing in my womb.

Obviously, this situation is a little different than Madelyn. It’s not that we don’t think we’ll see his face one day to give him a name. But we have been asking the Lord to give us one now so we can call it out when we pray for him. 

Also, we don’t want him to be known as “fetus” or “baby,” as the doctors like to call him right now. He’s alive and real and here. We want them to know we’ve assigned a sort of identity to him.

Let me give you background on how we got here.

The other night, Nathan and I were talking about King David’s Mighty Men in the Bible. 

Know them? There were 37 of them (see 2 Samuel 23:8-39 and 1 Chronicles 11:10-47). They were fearless, courageous, gutsy, and loyal. They were the Navy Seals of David’s army (but I'm sure Nathan would rather I say they were more like the fighter pilots of his squadron).

They did things like kill off 800 enemies in a single encounter. 

Three of them broke past Philistine lines near Bethlehem just to bring King David a drink of water because he'd requested it from their well. (Nathan says it would be like trying to sneak past your worst, deadliest enemy for a good cup of coffee. Not worth it to me, but these guys were FIERCE.) 

One guy single-handedly battled and killed a lion in a pit on a snowy day. 

Another guy killed 300 enemies with his spear. 

And Uriah—remember him? Dude wouldn’t sleep with his wife before battle because he was that loyal to his king and bros. 

These guys were bad to the bone in the best way possible.

JOEL was one of those guys. 

The name really stuck out to us—mainly because it was one of the only ones in the line-up that we could pronounce, and because it might be weird to name our son after the chief, Josheb-basshebeth. 

Either way, Nathan and I want this little guy to be a mighty man of God—bold, daring, heroic, resolute, strong, tenacious. 

But wait, that’s not all.

Nathan gets up at 6:00 a.m. every morning to spend time with the Lord before the rest of us mosey in around 7:00 a.m. He's a ROCK and needs this to get his day going. (Don’t judge me. Jesus and I hang out later in the day.) 😉

This past week, during his Bible study and after our discussion about David’s Mighty Men, the Holy Spirit randomly led him to Romans 10:12-13 and then on to Acts 2:14-21 and then on to the Book of Joel. Both New Testament passages quote the prophet Joel.

Coincidence? We think not. 

The whole book of Joel is good and intense, but here’s the gist of it.

It talks about the disaster that came upon the Jews in the form of locusts and drought. The locusts destroyed everything in sight, leaving them with no hope or future, leaving them without answers. The drought caused famine and wildfires. All of it threatened their very existence. 

The Jews asked hard questions that any of us would in their situation: 

Is God truly in charge of heaven and earth? 

Is He sovereign? 

Is He really good? 

Will He be merciful to us? 

Do we even have a future?

In response, Joel offered a message of hope from the Lord. 

God promised He'd respond to those who had faith in Him. He'd reach down and heal their land. He'd replenish their fields, orchards, vineyards, and flocks. He'd restore their lives. 

Two of the verses that really impacted both us are:

The Lord says, “I will restore to you the years 

that the swarming locust has eaten… 

– Joel 2:25

And it shall come to pass that everyone 

who calls on the name of the Lord shall be saved.

—Joel 2:32

Such a terrible disaster has fallen on our boy. It threatens his very existence. But we have faith. 

We 100% believe...

• God, in his sovereignty is going to reach down, heal Joel's body, and replenish his life. 
• God will restore to us this time that Hydrops has eaten away and tried to destroy our son.
• God hears us when we call on his name to save Joel. 

We're asking...

• God to give Joel an incredible story of redemption for when he does enter this world. 
• God to raise this little Mighty Man up so he can tell others about what the Lord has done—how he was rescued from death. 
• God to embed this message of hope in our boy so he can one day share it with the world.

Thank you for praying with us. We need our family, friends, community right now to rally with us. We trust in Him. We're putting all our weight in Him.

How We're Doing

We've kept this close since the beginning—except for family and our closest friends. Mainly, because we don't know why this has happened. We still don't have answers for the questions people have.

But now that news of our Little Guy's illness is leaking out, many of you have asked how we’re doing (including Madelyn). 

The short answer is we’re good. No, seriously. We're good.

Our faith is stronger than ever. We really and truly believe God is going to work a miracle. We have so much hope in Him. We’ve made it a practice to call out who He is—out loud, at random—around each other.

He’s good.

He’s faithful.

He’s sovereign.

He’s for us.

He’s merciful.

He's in control.

We're anchoring all we know and believe on who He says He is and what He says He can do.

God taught Nathan and I both some serious spiritual lessons as single people before we ever even met each other 3 years ago. It's no coincidence that we learned what we did then, because we're applying them today. (I'll share more of this later.)

And Madelyn? She’s such a joy in the midst of such a heavy time. 

She’s so innocent and unassuming. She has no clue about the gravity of the situation. But she’s pure happiness wrapped up in a tiny little body. She’s made us laugh at just the right times. We love her so deeply. We’re so grateful for her on so many levels. We're holding her tight.

That being said, we’ve had some incredible people step up and offer to watch her so we can go to appointments that are so far away. Some of our good friends here in Columbus took her in yesterday ALL DAY. 

She had THE BEST time. They loved her and fed her and played with her. Thankfully, I don’t think she destroyed too many things at their house (or at least they didn’t mention it). 

We’re beyond grateful for how they ministered to us and how others have offered to do the same. This is what the body of Christ in action looks like. We couldn't do this without the amazing community of believers rallying around us.

Update on Baby Boy: Week 22

We went to Jackson again yesterday. Our first appointment was at 12:30 and we shut the Fetal Medical Center down last night. They were turning out lights and locking doors by the time we left.

We spent the first hour with a ultrasound tech getting a full echocardiogram. She took picture after picture of Little Man's heart—the chambers, the ventricles, the blood flow. It seemed like there were 825 dopplers taken. 

After the pediatric cardiologist reviewed everything, she sat us down in the consultation room:

“Your baby’s heart is perfectly normal.”

Those were her first words. Praise God! 

Fifty percent of babies with Hydrops have some sort of abnormality, defect, or arrhythmia. Our baby doesn’t have any of these. His heart is still so very small right now, but there’s no danger of Hydrops causing any problems with his little heart down the road. 

Next, we met with the genetic counselor. She explained strands, chromosomes, DNA, and finally said, "You probably remember all this from your high school science classes."

You should've seen our faces. We just laughed. I think she understood.

She explained that the results of the five infectious diseases they tested for last week had come back: parvovirus, toxoplasma gondii, CSV, HSV, and coxsackievirus. They’re all negative. 

It’s both good news and a little disheartening. At least he doesn’t have them, but that also means we still don’t have an answer. The doctors were really leaning toward an infectious cause. However, toxoplasma gondii was the only one they could've treat with antibiotics.

The "karyotype" genetic testing came back. It’s basically an overall picture of Baby Boy's chromosomes looking for major genetic disorders. Again, good news! Everything came back normal. He has all 46, so they've ruled out major genetic disorders. 

We’re still waiting on the “microarray,” which tests even deeper into the chromosomes for additions or deletions of DNA. (This is so over my head.)

Finally, we went through nearly an hour of a second anatomy ultrasound with two doctors. One of them took us from his head to his toes, looking at all his major organs and extremities. 

He pointed out that all the major “landmarks” of physical normality they generally look for are there: a fully functioning brain, heart, lungs, liver, kidneys, and bladder (of which it looked like he had just emptied). 

New to us this week was the fact that there’s no fluid buildup below the umbilical cord. He looks like a normal baby should look from the waist down. AND the bad fluid is around everything, but not in any organs. Good news.

Nothing else has really changed. He's not gotten any better or worse. It's something we can be grateful for as well. 

We're still praying. God is in control.

Drinking from a Fire Hydrant

We left at 5:30 a.m. this morning to make the 2 hour 40 minute trek to our 8:30 a.m. appointment in Jackson. Once we were finally seen, we went through 2 hours of intense ultrasounds by a tech, a young doctor, and the Fetal Medical Doctor, Dr. Morris, who will be our doctor going forward. 

Each person checked Baby Boy's heart, brain, organs, and limbs—over and over and over and over again. How can he be so sick? He was wiggling and turning his head toward us and stretching his legs. He's beautiful. 

We couldn’t help but smile and rejoice because we know the One who knitted him together in my womb—piece by precious piece. He’s such a gift to us already.

Once again, all the docs repeated the same things. He looks structurally perfect on the ultrasound, but he’s got “impressive” and “severe” fluid all over his body. Dr. Morris is fantastic, sensitive, and very thorough—a mother herself. She spent a significant amount of time with us, answering questions we had and those we didn’t know we had.

At the end of the day, they don’t know why this has happened. It’s nothing I did or didn’t do. Nothing I ate or drank. It’s not the severe morning sickness I went through. It doesn’t have to do with my age. It just happened.

Dr. Morris promised to walk with us through this, but she was also very realistic. She'll do all she can to help our baby live, but "most babies" don’t survive this. While it's rare, some do survive, so she offered some hope from a medical perspective.

The first step was to do an amniocentesis. Basically, they stuck a needle through my stomach and into my uterus to extract six vials of amniotic fluid. They’ll use it to run several tests and hopefully find a cause. 

This is a mom and dad’s worst nightmare. We’ve both cried and prayed and experienced a lot of emotions over the last two days. It's heart-wrenching and completely out of our control.

But I’ll be honest, we both felt such peace when we woke up this morning. We serve a God of miracles—a good God, a faithful God. We believe with every ounce of our hearts that He has a plan for this little boy. It doesn’t make it less difficult, but it gives us peace in the midst of tragedy.

So now, we wait. We place this completely in God’s hands. 

There’s no way we can solely rest in the “statistics" and “realistic expectations” and “medical history.” While those are great and we appreciate them and the doctors who offer them, we only trust in the Lord. We need Him so much. He’s our hope. He’s our joy. He’s our strength.

We’ve really clung to these promises:

You will keep in perfect peace all who trust in you, 

all whose thoughts are fixed on you.

–Isaiah 26:3

Don’t be afraid, for I am with you. 

Don’t be discouraged, for I am your God. 

I will strengthen you and help you. 

I will hold you up with my victorious right hand.

—Isaiah 41:10

For God has not given us a spirit of fear, 

but of power and love and sound mind.

—2 Timothy 1:7

We’re still processing. There’s just so much. From here on out, we’ll be traveling to Jackson every week. This will literally be a day-by-day, week-by-week journey. We covet your prayers for our little boy. 

We’re asking God for a miracle. We’ve seen him do it before. We know he can do it again. We’re asking Him to give our son an incredible story of His grace and mercy and healing. 

And if not, to God be the glory. We trust His ways are higher than our ways.

The News

"I hate to be the one to tell you this, but your baby boy isn't doing well. He's very sick."

It's something no parent ever wants to hear a doctor say, but it's what we heard today.

Just a week and a half ago, we went in for a routine anatomy scan at our regular OB's office. There, Baby Boy looked perfect. He was wiggling and squirming around. No concerns at all. 

In fact, Dr. Griffin said, "It looks like this is going to be a normal pregnancy just like Madelyn."

What changed in a week and a half? How could things have turned upside down so fast? Here's what happened.

Dr. Griffin scheduled me for a one-time visit with a Maternal Care Specialist, Dr. Brewer, in Tupelo. It's standard. She sends all patients over 35 years old this route just to get his quick nod of approval and sign-off. We didn't expect to be there for more than 30 minutes. 

The ultrasound tech was very quiet as she scanned my belly. She left and later returned with the Dr. Brewer, who took his turn checking on Baby Boy. Then they both left. Finally, he returned with a grim look on his face. 

My heart sank and he delivered the news.

Overall, he's "structurally and anatomically perfect." Ten fingers. Ten toes. Perfect heartbeat. Normal brain waves. No deformities or abnormalities. But there's fluid all over him—and lots of it.

They call it Non-Immune Fetal Hydrops.

He has ascites (fluid around his abdomen), pleural effusions (fluid around his lungs), pericardial effusions (fluid around his heart), and edema (fluid between his scalp and skull).

After reviewing the texts and my last ultrasound, what he couldn't figure out was how, all of a sudden, this had happened. 

At my last ultrasound with Dr. Griffin, Baby Boy weighed a healthy 10 ounces. But today, he weighed 1 lb and 3 oz, so he'd gained a lot in fluid in such a short time.

Of course, we wanted to know what could be done about this, but the outlook doesn't look good.

Hydrops is a symptom of an underlying issue that could be caused by any number of things—from infection to genetic issues to who knows what (about 20% of babies wind up here). 

The most devastating part is that the mortality rate is between 75-80%.

Dr. Brewer immediately referred us to a tertiary hospital and made an appointment at the Maternal Fetal Medical Center in Jackson for tomorrow. They have more resources and can take better care of us there. 

We're in total shock and super emotional. It's not something you ever expect to happen to you. But here we are. Even in the midst of this devastating news, we'll trust the One who created this Baby Boy.