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.