24-Hour Monitoring + Preeclampsia

Many of you have asked how we got to where we are now. It started the week before Joel was born.

I started experiencing several things physically—and they all came on fairly rapidly:
swelling
contractions
blurred vision
high blood pressure
excess fluid (polyhydramnios)
an overall sense of not being well
constant headache (that OTC meds wouldn't cure)

Sunday, February 12

This day was the worst. We went to church and lunch out at a restaurant after that, but I had to leave the restaurant to go sit in the car early. I'd been having contractions all morning, and I knew something wasn't right.

We got home that afternoon and I think Nathan realized how serious things were getting. So we decided to pay Dr. Columbus a visit the next day.

Monday, February 13

3:00 PM

At Dr. Columbus' office, we explained my symptoms—except they ran an additional test and added "protein in urine" to the long line-up. Apparently, this is a key marker in determining whether a pregnant woman has developed preeclampsia.

Dr. Columbus called to talk with Dr. Jackson #1 (who, if you'll remember, is on maternity leave) and they both decided it was best to send me to Jackson immediately for 24 hours of monitoring. That's all. Just monitoring. Nothing else—or so we thought.

5:00 PM

We dropped Madelyn off with our awesome neighbors. (They've been a God-send to us throughout this.) They readily took her into their home and we took off with just an overnight bag. Because remember? Just 24 hours of monitoring. We'd be home the next day.

My parents were already planning on coming to Mississippi that week to help me with Madelyn. I was getting way too big to pick her up or walk long distances (see: excess fluid build-up). So we called and explained to them the monitoring that would take place overnight. They agreed to leave Texas the next morning and even stop by Jackson to check on us before they went on to Columbus to get Madelyn.

8:30 PM

We got to Jackson and I was admitted to the Women's and Children's Urgent Care Center—basically an ER for women and kids. Immediately, they began to check vitals and draw blood. Needless to say, the whole experience didn't even start off well.

The first nurse who tried to take my blood gouged around my veins so many times that I passed out and woke up not knowing where I was or who I was. I opened my eyes to Nathan hovering over me along with a team of nurses trying to raise my blood pressure back to normal and asked, "Where are we? Is Madelyn OK? Am I OK?"

11:00 PM

We were moved to a room on the Labor and Delivery floor to begin monitoring. They started me on Magnesium Sulfate to bring my blood pressure down, plus a bunch of other stuff I can't remember. (P.S. "Mag," as they call it, is ridiculous. I felt like I'd contracted the flu. Now, along with everything else I'd been experiencing, I also had body aches and shivering. Ummm—thanks a bunch, medical community.)

They started a 12-hour series of tests to monitor the levels of protein in my urine. If you've ever had a baby, or been with someone who had a baby, you know as soon as you step foot in the hospital, all modesty and propriety goes straight into the toilet (excuse the reference, but since we're on the topic). I was poked, prodded, and awakened every hour on the hour all night long.

Tuesday, February 14

9:00 AM

Maternal Fetal Medicine called and they wanted us downstairs in their offices to check on me and Joel. This was the same place we'd visited so many times over the last 10 weeks. As we entered the room, guess who walked through the door? Dr. Jackson #2.

Not. Kidding.

What were the chances? It wasn't even supposed to be his day in office. Where was Dr. Jackson #3? Wasn't she supposed to be here today?

I could see the blood in Nathan's face rising. He was moving and shifting in his seat, ready to protect his wife and baby if anything untoward was said or done.

I grabbed his arm and said, "Not today, Babe. Let's just do this and get out of here."

So we sat silent and let them do their job. They did a routine ultrasound and found that Joel was still stable with a great heartbeat and no worsening of fluid.

But Mama? Not so much. I think I freaked them out. They were very concerned about my condition and said urine tests were no longer needed to determine that I did indeed have preeclampsia.

Dr. Jackson #2 and his colleagues highly recommended that we move toward delivering Joel as soon as possible for the safety of us both. At that point, additional steroid shots to boost Joel's lungs wouldn't help him. In fact, we were told that I was hours, if not a few days, away from a deadly seizure, so time was of the essence.

We had a lot to think about.

Update on Baby Joel: Week 30

About Joel

• He's still stable! Praise the Lord. Prayers are being heard and answered.
• His heartbeat was 148.
• His dopplers are all completely normal.
• The fluid around his heart, lungs, scalp, abdomen, and lower extremities has not worsened.

Once again, Dr. Tupelo announced, "I can't believe you're 30 weeks pregnant and still here. His Hydrops is still very severe, but this is surprisingly encouraging."

This time, we wanted to laugh and say, "Duh, Dr. T! We've been trying to tell you all along that we, along with so many others, have been praying God would sustain this little boy—and he has."

On the way home, I told Nathan, "Think about this. All along, all these doctors have done is take pictures and talk. There haven't been any surgeries or medicines or procedures performed on Joel. It has literally been the hand of the Lord that has sustained him. It's incredible. It's just what he wants."

About Mama

There are some new developments with me. 

Over the past week, I've noticed my blood pressure going up and up and up very fast. We've documented one reading every day and it's definitely either at the threshold of too high or just over—something the docs asked me to watch for.

Also, on Friday, I was diagnosed with Polyhydramnios (fancy word for excess fluid in the womb). I look and feel much bigger than I'm supposed to be at this point (measuring at 34 weeks), but this isn't atypical for moms carrying Hydrops babies.

Right now, docs are monitoring me for preeclampsia and Mirror Syndrome. I've had some contractions and severe headaches and blurred vision—all sporadic, but all things that point toward these conditions.

Keep praying! We're believing.

What We're Learning: Weeks 28+29

There's just a lot we're learning right now, so I had to publish a separate post this week. You can read the latest update on Joel here.

Here goes everything.

I (Kaylan) go to a weekly women's Bible study at my church. A few weeks ago, we started Priscilla Shirer's study called Gideon. 

Honestly, I decided to jump in on this study simply because I wanted the community and encouragement from other women during this difficult time—not necessarily because I thought it would be applicable to our situation right now. 

(Silly, Kaylan. Don't you know Jesus better by now?)

Over the last two weeks, it's like Jesus has written personal, daily letters to me upon the pages of this study. He's reading all my mail these days. I've jotted down notes so fast and furiously in my notebook with my favorite red ink pen that it looks like I've bled all over the pages. 

Then, after each Thursday morning session, I've sprinted to my car, dragging Madelyn behind me, to call Nathan and share with him what the Lord has said. It's turned out to be a HUGE encouragement to us both. 

Please go and read the story of Gideon. Much of what I'm about to say will make so much more sense if you do. Either way, here's what Jesus has been teaching us:

• The crisis we're in isn't powerful enough to put us out of God's reach. 

Listen! The Lord's arm isn't too weak to save you, nor is his ear too deaf to hear you call. —Isaiah 59:1

• The crisis we're in positions us for God's calling on our lives.

The angel of the Lord appeared to [Gideon] and said, "Mighty hero, the Lord is with you! —Judges 6:12

• God is more interested in changing our hearts than He is our circumstances. Ouch.

"Well done!" the king exclaimed. "You are a good servant. You have been faithful with the little I have entrusted to you, so you will be governor of ten cities as your reward." —Luke 19:17

• Everything that happens in our lives is either God-allowed or God-arranged. Nothing happens without being sifted through His fingers first. That means, everything He allows in this chapter of our lives is transforming us and preparing us for the next chapter of our lives. How dare we try to jump ahead to the next chapter before Jesus completes the work He's started in this chapter? Let the Man finish, Preuss Family.

And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns. —Philippians 1:6

• We're definitely not the same people we used to be before this crisis. We certainly have no business going back to where we used to be before this crisis. And we're learning we don't need everything we thought we would need to get through this crisis (i.e. doctors, causes, cures, plans, back-up plans, back-ups to our back-up plans, etc). 

He said, "My grace is all you need. My power works best in weakness." So now, I'm glad to boast about my weaknesses, so that the power of Christ can work through me. —2 Corinthians 12:9

• In Gideon's story, God reduced his army from 32,000 men to 300 men. Then, He sent them into battle against 135,000 Midianites. What in the world? How would the Israelites ever beat them with so few numbers? God had stripped away all his soldiers, resources, skill, etc. Want to know why? Because God didn't want just a little bit of recognition—He wanted ALL the glory. It seems God has stripped away a lot from our situation as well. Again, we have no cause, no cure, no doctor, and no real plan. I'm pretty sure He wants all the glory for Himself in this too.

The Lord said to Gideon, "You have too many warriors with you. If I let all of you fight the Midianites, the Israelites will boast to me that they saved themselves by their own strength." —Judges 7:2

So that's what we're learning. Get ready. I'm sure we'll have more to hurl at you next week as well. 

Update on Baby Joel: Weeks 28+29

Hi, friends.

Many of you have reached out and asked why there was no post last week. The reason why I didn't update was because of the following scenario that's recently unfolded with us and our team of medical professionals. We needed to get more details and set things up before I could tell you what's been going on.

About Joel

First things first, Joel is still stable. Thank you, Jesus!

His dopplers and blood flow still look great. His little heart is pounding away at a perfect beat. He's wiggling and moving and kicking and punching in the womb every day, multiple times a day. He's made it 9 weeks after being diagnosed, so that's a huge miracle. He's such a little fighter.

As of yesterday, he's weighing in at a little over 5 lbs, but most of that is fluid. And I'm measuring between 34 and 36 weeks pregnant (depending on what part of Joel's body you measure). That means Mama here is feeling and looking like the size of a big red barn these days.

The fact that there's so little to report on him, except that he remains stable, is such good news for us.

The Medical Players

Let me introduce you. I know I've mentioned them by name before, but I think this may be easier to determine who's who in the line-up. I'll call them:

Dr. Columbus – Our regular OB. She's awesome. She's a believer. She's a mom. She goes to our church. She delivered Madelyn, so we know her well. We trust her. She's 110% on our team.

Dr. Tupelo – The specialist who originally diagnosed Joel with Hydrops. He referred us to the Fetal Medical Center in Jackson. We like him. He's honest but compassionate. As of right now, to ease the heavy driving load to and from Jackson, he's agreed to see us every other week for a routine ultrasound and remain in cahoots with the specialists in Jackson about the results.

Dr. Jackson #1 – The first specialist who saw us in Jackson. She's amazing and her bedside manners are impeccable. She's one of a kind. She's a mom herself, really cares about her patients, and originally assured us she'd walk with us. But then she went and had a beautiful little baby girl three weeks ago. Now, she's on maternity leave for 8 weeks and she's out of the game.

Dr. Jackson #2 – The second specialist who's seen us in Jackson. He's on the same team as Dr. Jackson #1 and has agreed to pinch hit for her while she's out. His bedside manners are terrible with a capital T. Every time we've left an appointment with him, it takes two days for us to emotionally recover. Unfortunately, you can tell he's become desensitized in his profession.

Dr. Jackson #3 – The third specialist in Jackson we've been recommended to go and see. She's not quite Dr. Jackson #1, but she's also no Dr. Jackson #2 either (we've been assured). She's smart, honest, and compassionate. We'll see. We haven't met her yet. Stay tuned. She's coming on the scene soon.

The Situation – Week 28

Last Friday, we saw Dr. Jackson #2. Let me first say that Nathan and I have no doubt he's incredibly smart and good at what he does. But he could've cared less about our baby and/or well-being. He was more interested in going to lunch as soon as possible than answering our questions.

At one point, I asked him if he'd be taking care of us and Joel from here on out. His response? "Well...I mean...I guess so...if you want me to."

This was the third time we've seen him. It was also the third time he's explained to us everything about Hydrops from top to bottom, in the exact same way, with the exact same tone, and with the exact same lack of hope. Dude, we get it. He obviously doesn't remember us at all.

We asked if the plan presented by Dr. Jackson #1 was still the same, and he said, "If that's what you want."

We asked if he would still be draining fluid and administering steroids before delivery to help Joel's lungs. He said, "I really don't think it will help. The probability of this baby making it just isn't good."

Needless to say, we left mad. I was more worked up than Nathan was and said, on more than one occasion, that he obviously needs Jesus. I'll try to pray for him, but I'm still glaring and Mama Bear-ing him right now for not giving a care for my kid. 

We certainly don't put our hope in people. We trust and believe in a God who's bigger than what this doctor thinks or says. He doesn't determine if Joel will make it or not (even though he thinks he knows)—only God does. But I think it's fair to say we also want someone who's on our team, someone who will own us as patients, someone who will walk with us down this road. 

The Situation – Week 29

We talked with Dr. Columbus on Monday and explained what happened last Friday (i.e. I said to her, "I'm never going back there again if he's going to be our doctor from here on out.") She completely understood.

So at the last minute, we canceled our appointment in Jackson this week with Dr. Jackson #2 and went to see Dr. Columbus yesterday (Thursday) to figure out what to do next. Before our appointment, she'd already consulted with Dr. Tupelo and Dr. Jackson #1. 

Confused yet?

During their three-way discussion, new specialists in Memphis and Birmingham were thrown out on the table as options. But at the end of the day, they all agreed it would NOT be beneficial for us to start all over again at some new place with all new specialists and neonatologists and geneticists. Instead, they recommended we switch to a brand new specialist out of the team of seven in Jackson at the same practice where we began.

Enter Dr. Jackson #3. 

We haven't met with her yet, but we will. As for now, it looks like we'll flip flop back and forth between Dr. Columbus and Dr. Tupelo until we hit 32 weeks. Then, we'll go back to Jackson to meet with Dr. Jackson #3.

I'm snapping the rubber hair band on my wrist right now, trying to keep that flexible perspective I mentioned a few weeks ago. Everything seems to change from week to week. It's quite hard to keep up with. But we're trusting God's bigger plan in all this—even if, at this point, we have no earthly clue what's really happening from week to week.

Prayer

Thank you so much for praying. We're both completely overwhelmed every single day by the people in our life—near and far—who reach out to us and minister to our hearts through meals, phone calls, e-mails, text messages, etc. 

Thank you. Thank you. Thank you. We need you.

Please pray...

• For Joel's complete and total healing—especially that the fluid would go down in his little neck and head so they can get a breathing tube in once he's delivered.
• That God would prepare Joel even now to be a Mighty Man—a little fighter who will never hesitate to share with others that "Yahweh is the Lord," to proclaim that salvation comes from Jesus, and to remember that his life and story are a part of God's bigger plan.
• For patience and protection for our family. The enemy is looking for loopholes and weaknesses in which to stick his foot in and pummel the mess out of us at every opportunity.
• For endurance during this time of waiting.
• That we would keep our eyes fixed on Jesus and use every spare moment to bury our faces in God's Word and worship Him in this storm.
• For Madelyn, that she would be unaffected by any arrows the enemy throws our way. 
• That Jesus would give us exactly what we need to make it through each day—nothing more, nothing less.
• That we would live with grateful hearts for each and every day that God gives us as a gift with our sweet Baby Joel.

Update on Baby Boy: Week 27

(Right now, I have an 18-month-old tugging on my arm and asking for a snack. Some weeks are proving to be harder than others to get a blog post written and posted.)

We wait...and pray...and wait...and pray.
It seems like this is all we ever do these days.
Some days are more harrowing than others.

However, this last week's visit to Tupelo was the most encouraging visit we've made to a doctor in several weeks. Not because of any miraculous grandiose news, but because of the prayers of people. God's presence and peace were very near when we entered what I've now affectionately deemed the Dark Dungeon of Despair (aka the sonogram room). We felt Him there.

About Joel

• He's still stable. There have been no real changes in fluid over the last two weeks.
• His heartbeat was a solid 154. Praise God.
• He was wiggling and moving like crazy—still in the breach position.
• By this point, the doc said Hydrops babies start to develop abnormalities in their brain and heart dopplers plus blood flow through the umbilical cord. All of these things are functioning completely normal for Joel. Again, PRAISE GOD.
• Joel is starting to practice breathing on his own! The ultrasound tech said she usually doesn't see this until around 29 weeks, but there he was. Every now and then, his little diaphragm would rise and fall. Our little fighter is already working to strengthen those lungs so he can breathe on his own.
• Obviously working alongside the opinions of specialists in Jackson, Dr. Brewer is now highly recommending we push even further than 32 weeks of pregnancy if Joel is still looking stable and all vitals are normal. This will medically increase his chances of survival outside the womb.

Dr. Brewer repeated his lovely sentiments to us: "I still can't believe I'm seeing you back here again this week. Everything looks normal except the fluid. His dopplers are normal. His blood flow is on track. His heartbeat is strong. It's both perplexing and encouraging."

And then Nathan went off on him (in the kindest way, of course).

He told Dr. Brewer that this is a miracle in and of itself—that we'd been praying Joel would be a Mighty Man of God, that God would give him a strong heartbeat, that this is no surprise to us because God has answered our prayers over the last 7 weeks.

And I just let him preach. The gospel is oozing out of my sweet husband right now.

What We're Learning

Lesson #1

Last April, we had a miscarriage at 7 weeks. It was definitely hard. But that, combined with this, has made both of us realize the frailty and brevity of life. It's made us aware of our own weakness as human beings and our intense need for a God who is strong and sovereign and fights for us.

Teach us to realize the brevity of life, so that we may grow in wisdom.
—Psalm 90:12

Lord, remind me how brief my time on earth will be.
Remind me that my days are numbered—how fleeting my life is.
You have made my life no longer than the width of my hand.
My entire lifetime is just a moment to you; at best, each of us is but a breath.
We're merely moving shadows, and all our busy rushing ends in nothing.
We heap up wealth, not knowing who will spend it.
And so, Lord, where do I put my hope?
My only hope is in you.
—Psalm 39:4-7

We're learning not to lay our hope in tomorrow or next week or at 32 weeks of pregnancy, but instead to live right this very moment. It doesn't mean we don't continue to ask God to work a miracle in Joel's life in the days to come, but our daily bread has never been more real to us.

Lesson #2

Speaking of our daily bread, the other day, Nathan mentioned the Old Testament story of God raining down manna (literal translation = "What is it?") from heaven for the Israelites to eat while they wandered in the wilderness. God only gave them what they needed for that day. Any extras they tried to keep until the next day had gone bad, filled with maggots and emitting a putrid stench.

Some gathered a lot, some only a little. But when they measured it out, everyone had just enough. Those who gathered a lot had nothing left over, and those who gathered only a little had enough. Each family had just what it needed.
—Exodus 16:17-18

We're learning that Jesus gives us exactly we need for today—nothing more, nothing less. His grace is sufficient. Nathan said it best a few days ago: "No one is guaranteed even the next five minutes, so let's remember to thank God for every single day for His blessings and for the last 27 weeks He's given us with Joel. They've been a gift to us from Him."

Lesson #3

I think it's been so easy—especially for me—to get discouraged and caught up by the uncertainty of what lies ahead. I play out the scenarios in my head sometimes instead of having faith in God's good, perfect plan and realizing I have absolutely no control over our future. I know—NOT good.

When will Joel be delivered? Will he be OK? How will we handle it?
Will he have to live with a debilitating illness or disease for the rest of his life?
What will the next two months look like for us?
Will Madelyn be OK? Will our family be OK?

Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.
—Deuteronomy 31:8

My former pastor in Nashville once preached a sermon where he explained that God lives outside of time. He's not ruled by the clock or timetable that we live and die by. He can see the grander scale of all things—past, present, and future. He's that sovereign and all-knowing.

That picture may make it seem like He's a million light years away, like He's hands off or uncaring, like what's happened or will happen catches Him by surprise. But that's not true. He's the Creator of all things.

He's actually the One who wrote the BIG story of humankind from beginning to end and He's intricately involved in the very details of our lives—even orchestrating every moment down to the second. When I step back and take a 50,000-foot view of all this, when I understand these things about our great God, it helps me breathe a sigh of relief.

He's got us. He sees us. He knows us. He loves us.

There's been so much grace from the Lord to walk through this day by day. There is certainty when we choose to follow Him and keep our eyes fixed on Him. What we want more than anything is His will, for His bigger plan to unfold, and to join Him in that—even if the circumstances stink.

Prayer

I have to say this: don't be scared of us.

There are some people we've shared our story with who automatically avoid or ignore us—not because they're mean or don't care. In fact, I think they actually do care. But they don't know what to say when we're face-to-face or they don't want to be placed in an awkward conversation.

We get that. We totally do.

Often times, there are no words for this kind of situation—and it can feel awkward. But we appreciate those family and friends who: approach us and ask the deep questions; are willing to listen to the raw, genuine responses from us; and can handle the emotion and tears should they show up.

This week's prayer requests are the same song, second verse. Please continue to pray that God would:

• Completely heal Joel and make him a Mighty Man.
• Reduce the fluid in Joel's neck/head so doctors can get a breathing tube in once he's delivered.
• Give us His overpowering peace and presence at every doctor's visit.
• Give wisdom, compassion, and knowledge to the doctors.
• Place the right doctors around Joel at the time of delivery.
• Protect our family from the lies and fiery darts being shot at us from the enemy.
• Surround Madelyn with His love and grace as we leave her with friends to attend doctors visits. 
• Empower us to make much of His Son, Jesus, throughout this journey.
• Give us the courage to accept His will—no matter what He decides for our sweet Joel.

Update on Baby Boy: Week 26

Sorry I'm late with this week's update. If the first week was like drinking from a fire hydrant, then last Friday was like drinking from Niagara Falls.

First things first. About Joel:

• We had our routine ultrasound. He's still in the same condition—not better or worse.
• His heartbeat is still solid, so they consider him stable.
• You can see a massive pocket of fluid build-up on the left side of his chest cavity that's pushing his tiny lungs and little heart all the way over to the right. He's having to work harder as a result.
• Fluid has leaked down into his arms.
• His ears are nearly unrecognizable because of so much fluid build-up.
• A normal woman's amniotic fluid levels range from 4-25. Mine is still normal, but I'm sitting at 24, so I'm on the high end. (No wonder I look and feel as big as a house.)
• The doctors are most concerned about the fluid surrounding Joel's face and neck. If that swelling doesn't go down, it will be very, very difficult to get a breathing tube in him once he's delivered.
• The plan still stands. Joel will be delivered between 28-32 weeks at the optimal time when doctors determine it's best for his chances of survival.

After the ultrasound, we met with the head neonatologist, Dr. Kosek. Our 2-hour visit with her was what took the most time.

She's kind and considerate and gentle and very maternal herself, about the age of our own mothers. Her job was to fill us in on what would happen once Joel is born—from where the NICU is located to exactly what they'll be doing to help stabilize him right after delivery to where the Chic-Fil-A is in the hospital in case we need dinner. 

Not kidding. She gave us details down to the minute degree.

We weren't expecting that kind of onslaught of information. And even more than that, during the course of our discussion, we were asked to decide things (or at least consider things) no new mom or dad should ever have to make about their newborn. EVER.

I think I've held it together pretty well up until that appointment—despite the despairing head shakes and somber faces and dark, dreary atmosphere. But it got way too real for me in that consult. That's why I couldn't bring myself to update you until now.

We left the hospital and the weight of it all hit me. It was literally more than I could physically carry. If I'd been shooting a scene for a movie, there would've been only one take. No cuts. And I probably would've won some sort of Academy award for my performance. It felt—and probably looked—that dramatic.

When we walked into the parking garage, I collapsed onto a bench in front of passersby and wept my eyes out—shoulders heaving, uncontrollable wailing, ugly face kind of crying. Nathan had to help me get it together. We sat there for what seemed like forever before he helped me hobble to the car. 

It was such a HARD day—for both of us.

But now that we've had a few nights to sleep on it, I can't say we're completely back to normal, but at least we've both had time to rest, process things, prepare our hearts and minds for outcomes, and soak in every ounce of encouragement we can from the Spirit.

What We're Learning

Lesson #1

I love the story of Shadrach, Meshach, and Abednego in Daniel 3. I read it again yesterday. I hate that stories like this have often been toned down into simple stories for kids because it's so powerful for any believer. If you've forgotten what happened, go read it here.

When these guys refused to bow down to the gold statue and were sentenced to death in the fiery furnace, they told the king: 

We don't need to defend ourselves before you. If we're thrown into the blazing furnace, the God whom we serve is able to save us. He'll rescue us from your power. But even if he doesn't, we want to make it clear to you...that we'll never serve your gods or worship the gold statue you have set up.

We know God did rescue them. But what I love is their perspective on the Lord when everything pointed south, when there didn't seem to be a way out. They basically said, "Our God can. Our God will. And even if He doesn't, we want to make it clear to you that He's still God." 

That's the kind of perspective we want to have.

Lesson #2

Nathan has been asking God for months to refine him and our family, to make us look more like Jesus. As we were talking the other night, he said, "I think we need to consider this a privilege that God has called us into a deeper walk with Him through this difficult time. We're called to abide in him and expect refinement in the process."

I could've punched him right then and there. What?! A privilege?!

But then, I realized he's absolutely right. God wants us to abide in Him at all times and in all situations—in both good and bad. Check this out:

I am the true grapevine, and my Father is the gardener. He cuts off every branch of mine that doesn't produce fruit, and he prunes the branches that do bear fruit so they will produce even more. ... Remain in me, and I will remain in you. ... But if you remain in me and my words remain in you, you may ask for anything you want, and it will be granted! When you produce much fruit, you are my true disciples. This brings great glory to my Father. (John 15:1-8)

The whole passage is deep and I've left out a lot of good stuff (read it here), but my point is this: during the good times, we don't peace out on Jesus and tell him we'll come back and reconnect our branch with his vine when times get hard. It doesn't work that way. 

NO! Branches (us) should always stayed connected to the Vine (Jesus) if we want to live abundantly and produce fruit. And throughout it all, we should expect to be pruned and refined as we abide in him.

Husband is right. Maybe God is pruning us through this process so we can produce more fruit. Pruning is painful. In fact, it hurts like heck. It's never easy. But it's good and needed. And hopefully, we'll look more like him in the end.

Prayer

I can't thank you enough for praying us through so far. We feel the tangible prayers of the saints all over the place—even from saints we've never even met.

Please continue to pray that God would:

• Completely heal Joel, and specifically reduce the swelling in his neck and head so doctors can get a breathing tube in.
• Permeate our lives and every doctor's visit with His presence and peace.
• Give wisdom and compassion to the doctors.
• Reduce the swelling and amniotic fluid build-up in me, so I don't develop Mirror Syndrome.
• Help us make much of Jesus throughout this process in our words and actions.
• See His will done no matter what.

There's Something About That Name

It's Mama! It's Daddy!
Water... Call... Papa... Call... Grammy... Nanna... Bu-berry ("blueberry")... Sit...
Minnie? Elmo? Minnie? 
(dance break)
Toast... Cow... Toes... Brudder ("brother")... Joe ("Joel")... Bee-bo ("belly button")... Bite...  
It's Mama! It's Mia! It's Daddy! 
Cheer ("chair")... Mouth... Duck... Bath... Nose... Lellow ("yellow")... Pino ("piano")... 
Elmo? Water? Elmo? Elmo?
It's Daddy! It's Manny ("Madelyn")! Whoa! Cool! WOW!
Bible... Night Night... Airplane... Ow-side... Walk... Saw ("sock")... Shoe...
Go? Go? Go!

And on and on and on—all.day.long. The above monologue was literally everything that just spewed out of her mouth within a matter of 10 minutes. She just talks and talks and talks. (I wonder where she gets it from.) 😏

I really don't mind it. In fact, I love it—except when I'm trying to talk to someone else and not paying full attention to her. Then she puts her requests/demands on repeat, slapping my arm to make sure I hear her above all else. And the sound escalates: "water. wAtEr. WaTeR. WATER. WATER! WATER!!!"

Today, though, in the midst of the never-ending toddler chatter, when my heart was the heaviest for Baby Joel, when I was praying for the presence of Jesus to be near, when I was asking Him to intervene, He showed up in a way I wasn't expecting.

Since Madelyn was a newborn, I've sang to her while we rocked right before nap time. Along the way, I've peppered in different songs, but always started off with one particular song: "There's Something About That Name." I'm not sure why I picked this one. Maybe it's because I grew up on old hymns and gospel songs.

Today, as we sat down to rock, for the first time ever, she grabbed my face between her chubby little hands and said, "Mama. Ting. Cheezus."

I had no clue what this kid was trying to tell me. But in true Madelyn fashion, she repeated it again and again, "Mama. Ting. Cheezus. Mama. Ting. Cheezus."

Then, the translation hit me: "Mama. Sing. Jesus."

Tears filled my eyes. My heart overflowed. She knew what we both needed in that moment. We needed Jesus. We needed to worship Him through our song. And so, as she laid her head down on my shoulder, I sang:

Jesus, Jesus, Jesus

There's just something about that name

Master, Savior, Jesus

Like the fragrance after the rain

Jesus, Jesus, Jesus

Let all heaven and earth proclaim

Kings and kingdoms will all pass away

But there's something about that name

Who knew that Jesus could use my little 18-month-old to minister to my heart in such a profound way today? And it must have touched our sweet Joel too—because as soon as I started in on the first note, he began kicking away.

Thank you, Jesus, for my little chatterbox.

Update on Baby Boy: Week 25

I've got a rubber hair band on my wrist right now. As I type this, I'll stop after every few words to pull on the elastic and watch it pop back into place.

Flexible—just like this rubber band. That's what we have to be right now because the schedule has been switched up once again. Instead of going to Jackson each week, we'll be flip-flopping every other week with Jackson.

Next week, Dr. Morris in Jackson. 
The next week, Dr. Brewer in Tupelo. 
The next week, Dr. Morris in Jackson. 
And so on and so on until Joel is delivered.

Yesterday, we saw Dr. Brewer in Tupelo.

Once again, they scanned Joel to find out where he stands:

• Stable. 
• Good heartbeat. 
• Moving around. 
• Larger placenta than normal (typical with Hydrops babies).
• Possible skin edema on lower extremities now (but nothing of huge concern).

Our biggest concern right now is extending the pregnancy as long as possible. We're praying Joel will make it to a delivery at 32 weeks or beyond. We need him to mature in the womb a bit more.

We also got all microarray genetic tests back. Normal. All of them. This, of course, has left everyone as stumped as ever. That means we've come to the end of the road as far as testing. There's no known cause in the genetics or infectious disease arena as to why Joel has Hydrops.

During our visit, Dr. Brewer said: "I'll be honest, I'm really surprised to see you guys here again. This baby has such a severe case of Hydrops that I didn't think he'd make it this long. But he's a fighter."

He sure is, Dr. Brewer. And we thank God constantly for it. 

It's been a rough week for me personally. I can't pretend that I'm always living on a mountaintop of faith and positivity through this. It doesn't mean I don't hope and trust. But it does mean I'm human. It means there are days when the sadness is overwhelming and my weak heart bleeds for my son.

Recently, I've been asking God all the hard questions. We've also simultaneously been reading through a 40-day devotional on the miracles of Jesus. Inevitably, every time I start in with the what-ifs and doubts, He responds through His Word.

Two nights ago, it was:
Why our baby?
Did we do something for Joel to deserve this?
Does God see us?
Does he have compassion on us?

That night, I read John 9:1-11.

It's the story of the man who was born blind. As they walked by him, the disciples asked Jesus, "Why was this man born blind? Was it because of his own sins or his parents' sins?"

Jesus said, "It wasn't because of either one of those things! It was so the power of God could be seen in him."

Then, he spit on the ground, made mud with the saliva, rubbed it on the man's eyes, and told him to go and wash in the pool of Siloam. He did and came back healed!

God's response to us: "This hasn't happened because of anything you did or didn't do. It's so my power can be seen in his life."

Then, last night, it was:
Why aren't you answering?
Why the delay in healing our baby boy?
What are you waiting for? 

Sure enough, I read John 11:1-44.

It's the story of when Jesus raised Lazarus from the dead. Lazarus was very sick and his sisters sent word to Jesus.

He responded, "Lazarus's sickness will not end in death. No, it happened for the glory of God so that the Son of God will receive glory from this."

Jesus waited around and didn't show up until Lazarus had already been in grave for FOUR days. He had compassion when he saw all those who were mourning the loss of his life. In an instant, he called him out of the grave and back to life.

God's response to us: "I hear you. I have compassion on Joel. This has happened for My glory. Everything in My time."

We get it, Lord. We hear you. Loud and clear. We trust. We believe, but help us in our unbelief.

Please continue to pray that God will remove the fluid around Joel's lungs, heart, scalp, and neck. To God be the glory—great things He has done and great things He will do.

The God of Miracles

This song has been playing on repeat in our house. Thanks to a family friend and my former worship leader in Nashville for recommending it as we seek God's face during this time.


The One who made the blind to see
is moving here in front of me, 
moving here in front of me

The One who made the deaf to hear
is silencing my every fear,
silencing my every fear

I believe in You,
I believe in You
You're the God of miracles

The One who does impossible
is reaching out to make me whole,
reaching out to make me whole

The One who put death in its place
His life is flowing through my veins,
His life is flowing through my veins

I believe in You,
I believe in You
You're the God of miracles

The God who was and is to come
the power of the Risen One
The God who brings the dead to life
You're the God of miracles!
You're the God of miracles!

I believe in You,
I believe in You,
You're the God of miracles

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.