Last call! We’re over here now: https://world.hey.com/avery. I just posted Ruth’s most recent update. 

You’re welcome to subscribe. When you do, writings will be delivered directly to your inbox (you won’t even need to leave your email client) as long as you’ve subscribed, and you can respond directly to me by replying to the email. It’s simple, clean, ad-free, and pictures are shared in high quality.

As they come, you will also receive my various other observations and musings, studies and reflections. Some are related to processing what we’re going through with Ruth, some are related to whatever I’m currently pondering, and some are related to what I’m studying in Scripture. But this is all just a bonus!

Ascribe to the Lord the glory due His name! (Ps. 29:2)

With all our caring for the girls, keeping of the home, and getting back to work, my time for writing updates has been sparse! But going forward I hope to post at least one update each week. I’m just a bit late to it this time around.

Before I get too far, though, I should share that I plan to change where I post these updates as we go forward for the long-term. GiveSendGo has been a godsend, but I’m sensing that it’s time to switch to something else.

That switch will be to my blog at https://world.hey.com/avery. This will deliver whatever I write directly to your inbox (you won’t even need to leave your email client) as long as you’ve subscribed, and you can respond directly to me by replying to the email. It’s simple, clean, ad-free, and pictures are shared in high quality.

Fortunately or unfortunately for you, you would also be signing up to receive my various other observations and musings, studies and reflections. Some are related to processing what we’re going through with Ruth, some are related to whatever I’m currently pondering, and some are related to what I’m studying in Scripture. Don’t think of it as added baggage, think of it as a bonus! 

Now, on to Ruth:

We’ve been so happy this week to see Ruth smirk and smile more. At first, she was just teasing us with smirks, but now Ruth gives BEAUTIFUL wide smiles to her mama when Lauren talks to her. And now I get that smile when I talk to her and tickle her chin. Next for the best sound in all the world: baby laughs! We’ve heard a couple from her in her sleep, but we would welcome more any time! There’s nothing like the sound of your own baby laughing. 

We had an EDI (Early Developmental Intervention) appointment for Ruth last week. As far as we can tell, she’s mostly on track (not counting her feeding issues) even despite all her setbacks. However, it was noted that Ruth has low muscle tone. It doesn’t sound like there’s much we can do about this, that’s just the way God made her.

On Monday, we had an appointment for Ruth in Iowa City with one of the leading doctors in club foot treatment. Praise God we’re so close! After waiting an hour (there were a lot of kids with club feet in the waiting room), we met with the doctor and found out that Ruth doesn’t have club foot, she has vertical talus. This is good. 

If Ruth had club foot, we would need to treat it non-surgically with stretching and casting. It would take at least 7-8 casts and then a brace, and we would need to travel down weekly for those appointments. 

But with vertical talus, we may be able to stretch Ruth’s foot out so that it doesn’t need to be casted at all. And if it does, it would only need 2-3 casts at most. Also, vertical talus is not genetic, it’s positional. This means that her foot was pressed up against the wall of Lauren’s womb for a long time. Or, as I joked with Lauren, it was pressed up into her face. Maybe that’s how she got her recessed chin. Babies are flexible, right?

Ruth definitely has an oral aversion now. She also seems to have more trouble swallowing and clearing her throat. All because of her weak throat muscles, laryngomalacia, and cleft. At worst, this causes her to gag and even vomit. Last night, she was even having trouble breathing. It wasn’t bad enough to go to the ER, but we were up monitoring her. Thankfully, she is doing much better this morning.

This afternoon we have a two-month well-child visit for Ruth with our family doctor. On Monday we have a nephrology appointment for Ruth to check her kidneys and her blood pressure. Finally, on Tuesday we have a consult with pediatric surgery for Ruth’s G-tube. 

In all of this, God continues to work on us. We’re heavy laden, but we’re continually learning to rest in Christ. Yesterday, against all logic, it was evident that the strength of the Lord was sustaining us, and He’s doing it again today as we pour ourselves out. We’ve had to surrender a lot, and we expect we’ll learn how to surrender yet more. 

For me, this surrender has included dreams, projects, and expectations for this season. But it’s made me realize that all too often I put those things at the center and push Jesus off to the side. I’ve ordered things wrongly, and that’s a mistake. It’s been a joy to correct this and it’s led me to let go of unnecessary stress and tension. Instead, I’m learning all over again to treasure and cherish Christ above all else and prioritize the responsibilities He's given me NOW. I've heard it said that life is meant to be spent. That has a lot less to do with myself (selfishness) and lot more to do with others (selflessness). That's the love of Christ.

Rightly ordered, those dreams, projects, and expectations may come, or they may not. And I'm learning to be okay with that. After all, when everything else is stripped away, Jesus still there. As Jim Elliot said, “He is no fool who gives what he cannot keep to gain what he cannot lose.” Jesus says it even better: "Then Jesus told his disciples, 'If anyone would come after me, let him deny himself and take up his cross and follow me. For whoever would save his life will lose it, but whoever loses his life for my sake will find it'" (Matthew 16:24-25).

P.S. This is a picture of Ruth without her NG tube! We had to take it out at 1:00 AM the other night and put in a new one. As you might think, it seemed like a good time to take a picture of her face. We like it a lot!

On Mondays otolaryngology (ENT) has cleft clinic. 

That’s what we discovered when we went down for Ruth’s appointment earlier this week. They schedule all their patients in the morning, bring in all the teams to consult where needed, and then those teams meet together early in the afternoon to collaborate so that the care they provide can be timely, efficient, and effective. 

All this just prompted me to say, “Man, I love a good team.” There’s just something about a crew of people, all with different specialities, coming together to work toward a common goal that none of them could have accomplished on their own. It’s simply better when they work together. 

Maybe that’s why I like the Ocean’s 11 movies so much. Or project management software like Basecamp. Or servant leadership and good delegation. Or the Trinity and the distinct roles each person of the Godhead has in Creation and Redemption.

Starting with the family, good teams make the world go round.

One of the neat things we found out at cleft clinic was that our nurse didn’t just have professional experience working with clefts in kids, but personal experience too. One of her children had a cleft. It was comforting to know she knows what we’re going through. 

As we talked more with her, we were astounded to find out that of her five children, four are two sets of twins. One set of fraternal twins and one set of identical twins! It’s one thing to have twins… it’s another thing to have twins twice!

As we waited for the doctor, Lauren and I tried to help Ruth fall asleep. It was one of her tired days. (Currently, she’s alternating between having an alert day and a sleepy day.) As I swayed with Ruth and patted her bottom (which seems to really help her), I decided to “Shhh” her in a new way to a new rhythm. This prompted Lauren’s to tease me with, “Ooo, fancy.” To which I quickly quipped to Ruth, “She thinks my ‘Shhh’ is sexy.” Oh, we laughed and laughed and laughed. If you’re not at least chuckling, I guess you just had to be there! But I guarantee that phrase is now in our marriage lexicon—along with several other inside jokes. 

Finally, our favorite ENT doctor/surgeon friend came to visit with us. She is a light! And it makes sense, because she’s a Christian! She’s a born-again believer in Jesus Christ! (As proclaimed in the New Testament, repent and believe. Turn from your sin and trust in Christ as your Lord and Savior.) I can’t tell you how refreshing it was to talk with her about Ruth’s medical needs in the context of our faith in God. She exhorted Lauren and I such that we left with our faith burning hot, and she even prayed over Ruth before we left. Lauren wanted to come back next week just to talk with her again about spiritual things!

As for Ruth, there are no new updates from ENT. We continue to pray that God will do a wondrous work of healing by growing her jaw, strengthening her swallow, fixing her laryngomalacia, and closing her cleft. We trust Him!

Ruth is getting bigger! She’s growing well from the breast milk she’s getting through her feeding tube. Which reminds me: I’m quite impressed by umbilical cords. They’re way better than any feeding tube we can make. God’s design is stunning if you just have the eyes to wonder at it. 

While Ruth has been on a bottle strike recently, she has been very interested in the breast. This is good! Lauren thinks that if it wasn’t for her cleft, she would be latching and breastfeeding without a problem. But her cleft and her laryngomalacia make that pretty much impossible to do normally at the moment, so we still need to work on getting her a bottle. Especially for the next swallow study at the end of October. Unfortunately, Ruth hasn’t wanted to do anything with a bottle since we transitioned home. And that’s the thing with babies, you can’t force them. 

But something that might be helpful in all this is moving to a G-tube. We have a consult about this in two weeks. Our hope is that freeing up Ruth’s face will decrease any aversions she has to taking food by mouth. Not only this, but it’s apparently a lot easier to manage than an NG tube. However, Ruth will need to stay overnight when she has surgery for her G-tube. 

Tomorrow (Thursday, October 3rd), Ruth has an EDI (Early Developmental Intervention) appointment at MercyOne in Waterloo. I’m not sure what this all includes, but surely some physical therapy. We’re looking forward to it. We’re curious to see how Ruth is tracking developmentally. Besides, we’ll be able to reconnect with one of our friends, who’s also a lactation consultant, from our MercyOne NICU days.

I’m hopeful we’ll have good news. Aside from her feeding issues, Ruth seems to be doing very well. I was excited to see her kicking around during some floor time earlier today! (We have to remind ourselves that it’s good for us to set her down! Is it possible to hold a baby too much?)

Other than that, I’m working again, and that’s gone well. My supervisor, Amy Schipper, complimented me for ensuring everything was in good order before I left, and I want to compliment my team, specifically Bailey Knowlton, whom I supervise, for covering way more way longer than any of us expected and for doing so with excellence. She’s done amazing work. I think she’s coming for my job! Man, I just love a good team.

I’m not back to 8-hour days yet, but I’ve gotten two, 6-hour days in. I appreciate their continued flexibility as I ease back into everything, and as we have appointments for Ruth. I’m also not back in the office yet, but my usual balance of 50% remote and 50% in the office will come soon enough. 

I’m truly blessed to work in this knowledge economy which provides the opportunity to do my work in such flexible ways.

To close, I’ll share the verse I always seek to meditate on regardless of the work I’m called to do—whether as a husband, father, church member, or employee.

Colossians 3:23-24

Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ.

It’s good for my heart to remember that Christ is Lord, and I’m serving Him before anyone else. And as such, I want the reward He gives more than any other! Amen. 

Now off to some hearty work with some good teams.

We made it back home again on Wednesday. Ruth was stable, and they had done all they could for her, so they discharged us.

They had suggested discharging on Tuesday, but we weren’t comfortable with that, so they waited until Wednesday. 

The care on the general pediatric floor was definitely different than the NICU. It was fast, not slow. The longer we stayed, the more grateful for home we became. This is a good thing—we hadn’t been when everything was so hard. 

We made it home after a stressful discharge (there’s always more to packing our hospital room and the Ronald McDonald House things than I expect) and an even more stressful ride home (Ruth was inconsolable). We had to stop at a Dollar General to take Ruth out and calm her down.

We came home to find our hostas hacked and our house deep-cleaned. We have our friendly neighbors and church friends to thank for this. It's my understanding that our dear neighbor Deb Rhoades led this charge, and as she said, “People care.” From the depths of our hearts, thank you, caring people! I can't imagine going through all of this without you.

Now we’re back to figuring things out again, and I feel like we’re making progress in this loop cycle. 

An example of that progress is that Lauren used rubber bands to color-code the syringes we use for Ruth’s feeds, and we know to use them in rainbow (ROYGBIV) color order. It’s a small thing, but I was jazzed about it. 

In the evenings, I’m back to marching Ruth around the island in our kitchen like it’s Jericho. That girl loves to be held, and she loves to be walked, and if you lay her down or if you sit down with her, she knows. Thankfully, she does sleep really well in her bassinet over night. I’ve tried to get her to sleep on her own like that during parts of the day, but she hasn’t gone for it. She knows!

In other news, I’m definitely dangle certified now. I can place an NG tube! I’ve done it twice, and let me tell you, it’s much better for all involved if you remember to use lubrication on the tube! I’ll likely have to place it again later this week. The tape that holds it down keeps coming up. We don’t want that! That’s the biggest problem with it. 

Another problem is that I yanked it off Ruth’s face on accident yesterday. It was bound to happen in sometime in some way. I was pulling Ruth’s car seat out of the car, and somewhere along the way the end of her tube lassoed the lock on the door—the part that clicks up or down to show whether it’s locked or not (see the attached picture). I didn’t realize it, and in one fell swoop the whole thing was removed. I wondered why she was crying—I just thought she didn’t like to be moved so much. Then I saw the tube hanging on the door. Thankfully she settled down quickly. The most painful part would have been the tape ripping off her face. Usually we use an adhesive remover for that…

Thankfully we were arriving at a GI appointment in Iowa City when this happened, so they were able to help us place a new NG tube. We also told them we want to move forward with a G-tube. But that won't happen for six weeks.

Today a registered nurse made her first in-home visit to check Ruth and all her vitals. She was great! She reports to our family doctor, and she’ll be making visits at least once a week. 

On Monday we go back for another appointment, but this time with ENT. This is a big deal, as Ruth has so much going on in this area, and we’re eager to meet with the doctor/surgeon again. 

I do expect to begin working again next Tuesday, October 1, and that will be a BIG adjustment. I’m thankful for the time off that I’ve had to focus on my family. My team in the Office of Admissions at UNI has been so understanding and so kind to us in all of this.

Thank you for keeping us in your prayers. There have been definite moments where I have seen God work in our lives in answer to them.

Song suggestion:

Loop Cycle by The Gray Havens

And just like that, we’re back in Iowa City. 

We were supposed to be back in Iowa City yesterday for an ENT appointment and a swallow study with SLP, but unfortunately that’s not the case. We had to cancel those.

We’re back because Ruth contracted the common cold (rhinovirus)—probably from her sister who had it earlier in the week. (I’m glad to know my girls are already learning to share!) This just goes to show her medical fragility, and it means that we have more to learn when it comes to caring for her. 

We’re not sure exactly when Ruth got sick. Since we’ve been home, she’s been spitting up or vomiting at least once a day (And because of her cleft, some of it often comes out her nose. Not nice!). Then the frequency picked up at the end of the week so that it was happening to some degree after nearly every feeding. We were trying to figure out why this was happening, and our theories covered everything from too much movement to uncomfortable positioning to the change in the fortifier (formula) we add to the breast milk she gets. And it may be a little of each of these are to blame, but another virus she has (a strain of enterovirus) is probably the biggest factor. Those viruses sure like to bully her.

Then she was also congested, and that caused a few of her spit-ups as she attempted to clear it when it drained down into her throat. At its worst, it also affected her breathing, especially Sunday night, which is what led us to bring Ruth to the ER in the early morning hours. Lauren had been so concerned about this she stayed up pretty much all night watching Ruth and took a two-minute video to document it.

In the ER, Ruth got poked and poked and poked again as they tried to find a vein to draw blood and place an IV. They said she was dehydrated from the viruses, and that her heart rate was way too high and that her veins had collapsed. It’s an understatement to say that it was hard to watch and comfort Ruth through all of that. It‘s the second time that I’ve thought we were going to lose her.

Doctor V, our neonatologist from Waterloo, rushed over to place the IV when he got the call. The first two attempts by the pediatric supervisor to place it in her scalp had failed. He focused on her legs and hands, and he was surprised by how strong Ruth was. He had a hard time finding a vein that work. I knew it was getting serious when he discarded his gloves and his gown as if they were getting in the way. Finally, he was able to get the IV placed in the top of Ruth’s left hand. It’s no coincidence that dozens of people from church and BSF were praying for Ruth at this exact moment. I was praying for the hands of Jesus to grip and guide the doctor’s hands. I love that image.

With Ruth on fluids and able to become stable, we prepared for a transfer to Iowa City again. The team put her on an adult-sized gurney (this was a visual oxymoron) and brought her by ambulance down to the emergency department at Iowa City. She slept peacefully the whole way—she was so tired. They wouldn’t let me ride along, so I followed just over 30 minutes behind.

I came directly to the emergency department, and after two security checkpoints and a short wait, I was able to join Ruth and comfort her. Oh, she was so sick. Seeing her so miserable was heavy on my heart. 

I wasn’t alone long, because Ken Ritchie, our good friend and dear brother in Christ, flabbergasted me by driving all the way down to Iowa City and showing up at the emergency department to sit with me. This isn’t the first time Ken has done something like this, so I shouldn’t have been so surprised. When we were in the MercyOne NICU in Waterloo, and Ruth went into respiratory distress in the early hours of the morning, Ken showed up in the waiting room to pray. We wouldn’t have known he was even there if Lauren hadn’t been walking the halls praying. Not only this, but he has now been with us both times we sent Ruth to Iowa City by ambulance. Because of course he was. That man has a shepherd’s heart!

I would also like to mention that David Pick II was also a blessing to my family yesterday. He showed up at our house right as we got home from sending Ruth off to Iowa City. It was God’s perfect timing because I needed to leave, and my mom and Lauren needed to pack, so he read to Martha (and did many other things too, I’m sure).

These men are just two examples from a mountain of people who have blessed us through this season of trials. Thank you to all of you. You know you who are, and so does our LORD. We love you! And you’ve taught us much about loving others!

To complete this little tangent, all I can say is if you’re not involved and invested in a Bible-believing, Jesus-loving, God-exalting church, what are you doing? Thank you, King Jesus, for your church. Thank you specifically for Cedar Heights Baptist Church!

Late in the afternoon, Ruth was moved from the emergency department to Level 10 of the Stead Family Children’s Hospital. They actually had me hold Ruth and sit in a wheelchair while they pushed us to the inpatient unit which provides general pediatric care. Ruth is only just over a month old, but apparently she has outgrown the NICU.

Since then, she’s gotten off of fluids and was eased back into her normal feedings. Ruth looks a lot better today, but she’s still not fully recovered. She’s congested, and she vomited again this afternoon. They were hoping to send us home already today, which we weren’t comfortable with because it seemed so fast, but I don’t think that’s going to happen now. We don’t want to see her dehydrated again, so we really want to get to the bottom of why she’s vomiting before we come home. But as it looks now, we’ll probably be discharged tomorrow and come back for a GI appointment on Thursday. This will be good for Martha’s sake. She misses home.

I’ve told a couple of people that Ruth seems to only be able to make it six days at home before she needs to go to the hospital. That pattern has happened twice now, and it’s one we want to break.

But the lesson from all of this is not isolation. We’re not to live as hermits. We have a toddler after all! Whatever we do, sickness will come. It’s a fact of life. As one of our care coordinators said, Ruth will likely be hospitalized again at some point. She wasn’t speaking bluntly, she was speaking from experience with her own child. No, we won’t move forward in fear. We will move forward with faith and prayer, with protocols and a plan. I’ve felt stuck, but we need not be. We can move—albeit slowly. There is a way out of this valley, and we’ll find it by following our Good Shepherd.

Mitchell Roelfs sent me a text that moved both Lauren and me to tears. The line that got us said, “Praying that God will show you a day where Ruth can laugh, eat, and run freely.” We needed that set before us. We want to see Ruth made robust! But if that is not the Lord’s will for this side of glory, I only ask that He will make it so on the other. That is infinitely more important.

We’re learning a lot through all of this. It’s almost as if God told us, “Try again.” Not sternly, but kindly. I didn’t realize He had so much left to teach us. 

Surprisingly, instead of being further stifled, our faith has been stoked. This as we’ve made the mistake of relying on our own strength instead of the Lord’s might. This as we’ve seen how imperfect we are yet clothed in our Savior’s perfections. This as we’ve reckoned with the fact that we are broken vessels sustained by God’s grace. We’ve come to the end of ourselves, and we’ve found God there. Our spiritual eyes are being opened wider than ever before.

Best of all, we’re not alone. When we’ve been faithless, God has remained ever faithful. One day, when I behold Him in glory, that reality will be set before me in laser-sharp clarity. I will have no doubts. No unbelief. No questions. I will be humbled, and I will crumple before Him in worship. Then He will set me on my feet, look at me with favor in His eyes, and wipe every tear from mine.

Listen and worship:

Flowers by Samantha Ebert

Hold Me Jesus by Rich Mullins

If I Stand by Rich Mullins

Merrill-Lee writing this so it will be quick and to the point, not beautifully written like Avery does.

Please pray! They are at the hospital here in Waterloo with Ruth. She is sick with viruses causing her to not be able to breathe well. She is also dehydrated and they are struggling to get an IV in. 

Pray for comfort for Avery and Lauren as they serve Ruth and make decisions for her. Pray for wisdom for the doctors to know the best path to take. Pray that the Lord who is the one created Ruth in her mother's womb would bring about peace, comfort, healing, and miracles. 

Please just pray and give encouragement in this time for the Johnson family.

When Dark Clouds Gather. I wrote this piece a few days ago as I considered the storms we faced in Iowa City. I thought we were through them. I couldn’t yet see what would come once we made it home. I didn’t know that what I was writing as reflection was actually preparation. We’re in some dark cloud days.

But let me start with thanksgiving. We rejoiced to come home! It was a special feeling to walk down the sidewalk and through the front door of our house after being away for a month. 

Time is a strange thing. With all that has happened, it feels like we were gone longer than we really were, but at the same time, it feels like we just left a few days ago. I imagine this is what it would feel like if I could have the superpower I’ve always wanted: the ability to pause time. 

In a way, time really did stop for us. Ruth is a month old, but we’re only now bringing her home from the hospital. We have a month-old newborn! I’m sure many NICU families wrestle with this oxymoron.

In preparation for our return, ladies from our church cleaned our home and started up our meal train again. Heidi Brocka took the liberty to decorate the house for fall (Lauren’s favorite season), and Merrill-Lee Pick stocked our fridge with our favorite things. Thank you, friends! 

It’s been humbling to receive so much help—from our moms, from our church family, from our neighbors, and from so many others. And it’s even more humbling that the help just keeps coming. I don't know how we would get through without it. God keeps reminding us that we are well-loved. I’m at a loss for how to express our deep gratitude.

We’re so glad to all be together again. This is the best. It’s hard to be split between two different places all the time.

We loved seeing Martha’s excitement to be in her own space again. She was jumping off the walls! That jumping is most definitely helped by the trampoline that our dear neighbor, Judy Benson, gave her. Martha has made much use of it since we’ve been back!

It’s also been sweet to see Martha love on Ruth. She’s had more access to her sister now that we’re home, and she covers her in hugs and comforting words whenever she can! Lauren and I are in awe at how much Martha loves her baby sis.

All this said, we’re not doing well. We’ve had some hard days and difficult nights. 

Being home again has made us realize the reality of our situation: We’re in this for the long haul. Coming home only means Ruth is stable enough to be home. It doesn’t mean we have the answers for her, and it doesn’t even mean that she’s doing better. Being home is a good thing, but it’s not a magic fix.

In fact, since we’ve been home, Ruth had less interest in her bottle and no interest in her pacifier. During her bottle attempts, she takes 5mLs or less. She’s been spitting up more, sometimes a couple of hours after she’s eaten, and we don’t know why. Her baby witching hour (yes, that's a thing) continues to be between 8:00PM and 12:00AM. That unexplained fussiness, combined with Martha’s needs and the nature of night, make these hours the hardest of each day. It’s too soon to tell, but some of this may simply be the result of transition. It may just be normal. There are a few other points of concern that I could list, but I’ll suffice it to say that we find ourselves scrutinizing everything. One of the physical therapists warned us not to make ourselves crazy. That's good advice.

After a comment made by our family doctor, and some additional research, we think it’s possible that Ruth has a neuromuscular disorder that’s yet to be diagnosed. This is speculation at this point, but it certainly would make sense for a number of reasons if this is the case. The daunting thing about this is that it’s not something she will outgrow, and it would only get worse.

Up to this point, we’ve been operating under Ruth having a mild case of Pierre Robin sequence. She should be able to outgrow the problems related to this. Adding more onto that is heavy.

It's funny, with Martha we were reluctant to see her grow and move on to the next stage. We wanted to cherish as many little days as possible. With Ruth, it's felt like the opposite. We look forward to her cleft surgery, which could happen at the one-year mark, as we expect it would go a long way in addressing the challenges she faces. But as always, we must remember where our hope truly is. Psalm 121:1-2 says it nicely, "I lift my eyes to the hills / From where does my help come? / My help comes from the LORD, / who made heaven and earth." I've always loved this song.

We have an appointment with ENT and SLP bright and early on Monday morning. Ruth will have another swallow study done during this, and maybe this will provide more answers about what’s going on.

We’re home, but we’re facing some of our hardest and lowest moments here since we were in the NICU in Waterloo. A couple of nights ago we just sat in the kitchen and cried. I feel brittle. Lauren feels like she could crumble. We're probably going through the stages of grief. We’re definitely being broken down and learning to trust God all over again. We're making mistakes, and we're fighting for faith. As I said in one of my worst moments to some friends seeking to comfort me with rock solid realities, “I know all of that [truth]. It's anchoring me. But I still have feelings as I ride these massive waves.” Those feelings ought not master me, though. My master is the Lord God: Jesus Christ. 

A bright light in all of this which reminds me all will be made right is our family worship time at dinner each night. After we read a passage of Scripture (1 Samuel at the moment) and pray, we sing and worship the LORD. The song we're blasting through the house and belting out together this week is I Speak Jesus by Charity Gayle. We start here and then roll with whatever comes next.

P.S. Again, Lauren and I know there are so many willing to help us. We just need a few days to figure out rhythms and routines along with what our needs are and how they can be addressed. We don’t get excited about offloading Martha or Ruth because we’ve been doing that for a month. We're not opposed to doing that, but right now we want and need time with our girls, together. However, organizing our things after returning home has been a difficult task and may be an area we could use assistance. The never-ending washing of dishes, clothes, and feeding supplies could also be helpful. 

It’s finally here. Discharge day! We’re leaving the hospital!

The last few days we have focused on completing the final steps that the NICU requires for us to leave. Ruth needed to complete a car seat test, Lauren and I needed to watch several training videos, and one of us needed to place Ruth’s new NG tube. 

The car-seat test was straight forward enough. Ruth just needed to sit in her car seat for 90 minutes without anything weird happening. She passed! We’re aware that weirdness is much more likely once she’s sitting next to her sis, though.

Lauren and I were both comfortable being the one to place the NG tube. So who did it? My dear wife talked me into letting her do this one because she was practiced up. However, we found out that it’s much harder to place an NG tube on your own living, moving baby than on a doll with a hole in his nose. It was Lauren’s mama-heart to see Ruth so uncomfy, but she did great! God willing, we won’t need to place another NG tube for 30 days, but when we do, I have dibs!

It’s remarkable to think that the thing God is using to sustain Ruth’s life is a thin orange tube taped to her cheek that goes down her nose and into her stomach. Without it, she wouldn’t be able to get near the calories she needs to live, let alone grow. It’s strange to say it, but I’m thankful for silicon and polyurethane and even plastic (Whatever this little tube is made from). May we not forget that all this technology is a gift from the LORD.

We had quite a few visits as different members of our care team closed outstanding inpatient tasks and prepared us for outpatient world. There, a slew of follow-up appointments await us. As the year progresses, we expect several to drop off as they become unnecessary. That’s the hope, at least.

The dietician stopped in to talk with us about the fortifier we recently started adding to Lauren’s milk to give Ruth a boost in calories. They want to see thigh rolls on her thigh rolls. She and Lauren had a good conversation, and we are equipped to do what’s needed with this at home. Ruth is still on a sodium supplement we add to her feeds, which was strange to the dietician because Ruth doesn’t have any conditions that would normally merit needing that. We’re not reading into it, though. 

Our SLP friend stopped by too. She answered Lauren’s good questions (the doctors and nurses have complimented her for asking such excellent questions), and told us that she would like to do another swallow study in a week or two when we come back to see ENT.

Ruth hasn’t made much progress in feeding over the last month, so we need to continue to take this to the Lord in prayer. It’s possible that she is developing an aversion to the bottle and her pacifier, but I’m likely overthinking it. We’re just hyper-alert about that. We want to create positive feeding experiences! Thankfully, there will be less pressure at home. We just need to make meals fun!

At the end of last week cardiology left two comments on Ruth’s most recent echocardiogram. After review, they decided they want to follow up with her in six months with another echo.

Though it was our last night in the hospital, we did end the day yesterday with unsettled hearts. I felt like we were missing something. What if we made it home, things go poorly, and we have to be readmitted later? It was a moment of little faith. Not to mention that I had been harsh with my wife, impatient with my daughter, unloving, selfish, and hard-hearted. These sins surely played into my inner turmoil. Thankfully, after I took these to the Lord in prayerful repentance, my faith and peace and joy were restored and bolstered.

We’re thankful that today’s a new day, God’s mercies have been refreshed just for it, and we’re coming home!

And now for a hodgepodge of news from our life in Iowa City.

It’s official. I’ve outgrown the pants and shorts that I packed. (This doesn’t include the stretchy, athletic ones.) I’m amused by this because not long ago I was cinching one of these pairs of pants tight with a belt. Let this be a warning to you: If you wash clothes in the water here, they may just shrink!

Lauren and I got dangle trained on Friday. We’ll place our first official NG tube (down Ruth’s nose and into her stomach) tomorrow. Then it won't need to be replaced for 30 days unless it gets yanked. Our exit is dependent on at least one of us completing a successful dangle!

I’ve told everyone that we’ll be nurses by the time we leave, and in a way, this is true. Ruth has medical needs. We’ll be her nurses as we run her feeding tube, manage her meds, and take her blood pressure. We're praying she outgrows all of this over the coming year or sooner.

A resident from orthopedics did stop by for an introductory consult before we see them outpatient for Ruth’s club foot. They won’t want to see her again until she’s at least 8 kg; she's only 3.5 kg at the moment. So she has a ways to go.

Of special note to the resident were Ruth's second and third toes on both feet. They aren’t webbed, and they aren’t really conjoined, but they are together at the metatarsals. The resident hadn’t seen anything like them before. But they won’t be any trouble to Ruth. Oh, baby toes. They make me smile. They should be added to My Favorite Things. 

The fire alarm went off at the Mac House the other night while Martha was on the potty just before she was about to go to bed. Everything is okay! Apparently it was just some wiring acting up. But all this to say that Martha is becoming well acquainted with situations that require firemen, from getting stuck in the elevator with me to a fire alarm evacuation with Lauren. Still, she likes nurses best and wants to be a midwife. If you call her Midwife Martha, you might just make her day.

Ruth had another echocardiogram done to check the structure of her heart as part of the preparation for her discharge. We heard at rounds yesterday that there were two comments on it. Apparently her ascending aorta is dilated slightly. It's just above the normal level. There may be reasons for this, such as her high blood pressure, but we don’t know much else at the moment. Our team is checking with cardiology about it.

It would be the pits to be so close to coming home and then have to stay longer. But it can happen. We’ve heard of it happening to other families. However, if this is a concern, we would rather find it now and have it addressed than not at all. We’re praying the findings of this echo are nothing of consequence.

If we are able to make it home this week, yesterday was the last day for us to take part in the wave-to-the-kids-in-the-children’s-hospital tradition at Iowa home games. My mom and Martha painted a huge cardboard sign that said, “Wave to Baby Ruth” for us to put in our window. It's impressive!

Martha and I did nearly miss the wave. She was napping at the Mac House, a half mile away from the hospital, and I wasn’t going to wake her. She needed that sleep, and I was at peace with that. But then I accidentally woke her, and it was go time. There were three minutes left in the first quarter, so I grabbed what I needed, changed her clothes, and got my shoes on. Then I raced over to the hospital with an uncooperative stroller and an untied shoe. We made it to the window just moments before the wave, and we were able to take part one last time. God’s timing was perfect. I’m still amazed at how He worked that out. 

Lastly, I just want to note that while we’ve had our share of low moments over the last month, God has been too kind to leave us there. He continually fills our hearts with joy. If not on the hard days themselves, soon after. What a blessing. What a good God! We love you, Lord!

Ruth has officially exhausted every test they can put her through.

Her heart is normal, her kidneys are normal, her brain is normal, her hearing is normal, her sight is normal, her labs are normal, and her genetic test came back as normal, too. 

We’ve tasted a lot of normal with Ruth just to have it taken away later—from home to the hospital, from normal test results to new rounds of tests. That’s hard! Reflecting on all of this, I never realized I valued normal so much. I never realized normal was an idol in my heart. Thankfully, it’s smashed now. I’ll have to be wary so as not to put the pieces back together.

After all that we’ve been through, this is what it comes down to: Ruth is a normal baby with an abnormal feeding issue. She doesn’t eat by mouth like she should, and that’s a big problem. But that problem doesn’t have to do with her heart, or her brain, or her genes. The best we can tell is that it’s simply structural. As the CMA (genetic test) put it, she’s normal with a few congenital abnormalities: a nontypical club foot, a slightly recessed chin, and a soft palate cleft. The hope is that with time, care, and treatment, she can grow out of these things.

Which brings me to the most normal update I can share: We’re coming home. Yes! This baby is going wireless! We anticipate we’ll make our return next week.

After much prayer, consideration, conversation, and questions, we feel led by the Lord to choose the wait and watch approach. Grow, Ruth, grow! We’re thankful, too, because our care team, which includes our new doctor/surgeon friend in ENT, agrees with this decision.

We’re not in the clear yet. We have a big year ahead of us with Ruth—a big year of prayer and appointments!

Ruth’s coming home on an NG feeding tube (Lauren and I will get trained on dangling an orange spaghetti noodle down her nose), with the potential of surgery for a G-tube later if it becomes necessary. She’ll also be coming home with blood pressure medicine—another point of continued prayer.

We’ll have lots of appointments in Iowa City over the next year, with our first round starting two weeks after we get home. We’ll come back to check in with ENT, GI, the dietician, and SLP. Ruth will also have appointments within the next six months with ortho for her club foot, ophthalmology for another eye exam, nephrology, physical therapy and/or occupational therapy, neurology, and the High Risk Infant Follow-up Program. At a year, she’ll meet with the genetic team again, in case there’s been any developments in that area, as well as the ENT team, so they can surgically repair her soft palate cleft. So basically everyone that's ever seen Ruth will want to see her again. She's popular!

As far as mandibular distraction (jaw surgery) goes, this decision to wait and watch doesn’t mean that Ruth won’t eventually have that surgery, but it also doesn’t mean that she will. Her Pierre Robin sequence is mild; it’s possible she will grow out of it if her jaw has catch-up growth. That’s what we’ll pray for! 

Ruth couldn’t be more aptly named. From the first week of life, God has redeemed her life. We will delight to see what other ways—including the ultimate way in Christ—He will redeem her life in the coming years. 

Yes, God has done a lot of “normal” work in Ruth. But really, each normal is a miracle in a string of miracles—all of which make for a necklace that will adorn Ruth for the rest of her life.

We're praying and praising!

James 5:13

"Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise."

As independent Americans, we don’t like to ask for help, let alone feel indebted to anyone, but I’m making peace with the fact that I will have a debt of thank yous I will never be able to repay. 

And the thank yous that I am able to give won’t come close to expressing the depth of my gratitude. Thank you for caring for us in this trying season. Thank you. 

Your care has come in so many forms, and I’m grateful for all of it, but I specifically want to express deep gratitude for those of you who have given to us financially. 

Starting at the end of last week, I began taking unpaid time off from work under the Family and Medical Leave Act. This is one of the ways your giving helps. It allows me to focus on supporting my family through this trial.

I do have the privilege of having a job that allows me to work remotely, and I look to pick up hours when I can, but I just won’t have the capacity to work as much I would like. The days pass quickly here, and my attention is valuable.

So thank you for your gifts. I didn’t have any expectations, but what we have received is all beyond anything I imagined.

If Christ is your Lord and Savior, you have stored up treasure in heaven, and any thanks I can give you pales in comparison with the reward you will receive from Christ. But still, I thank you.

As I close, it occurs to me that this is all gospel practice. And it runs counter to everything I listed in the first sentence. We can’t be Christians without acknowledging our need, asking for help, and being indebted to One we can never repay. Thankfully, Christ doesn’t expect us to repay Him. He delights to be our benefactor, and He will be—forever.

With all that said, and with the amount raised for us in mind, this song seems fitting: 10,000 Reasons (Bless The Lord).

10,000 reasons, yes, and more!

P.S. I want to thank our dear friend Merrill-Lee Pick! She’s done so much for us. But of special note is her initiative to start this page. It was primarily meant as a way to streamline updates, share prayers, and, if anyone so desired, give to us financially. Looking back, this was a need we didn’t know we needed. Merrill-Lee, you have been used by God!

P.P.S. I want to thank my colleagues in the Office of Admissions at UNI. They have always been so supportive of our family, and they’ve always kept everything in perspective. Specific thanks to our director, Terri, and my supervisor, Amy, as well as Bailey and Jamie on our systems and communications team, for covering so much for me while I’ve been away. That’s no small thing! I look forward to coming back and catching up.

Last night the ENT doctor/surgeon came in and visited with us about our options for Ruth. 

We’d heard great things about this doctor, and she did not disappoint. Before she went into the medical field, she was an engineer (if that tells you anything). She’s quite busy, so it meant a lot for her to take time out of her Sunday night to explain potential procedures and plans while we peppered her with questions. It meant even more when we found out her mom (whose name is Martha) had just been hospitalized. She stepped away to visit with us knowing she wouldn’t have time in the next few days.

Her main goal in meeting with us was not to drive us to a decision, but to talk us through what we can do to help Ruth. She really wants us to take time to sleep on what she shared, talk through it together, and then make a plan. I anticipate Lauren and I will spend the next several days in much prayer. We need your prayers for wisdom, discernment, trust, and unity. 

I’ll see if I can summarize what we know. 

The root of Ruth’s feeding issues is her small and recessed mandible (her jaw and chin). This is because all of the tongue muscles connect to the chin. In utero, this caused Ruth’s tongue to be pushed back and up, and it kept her soft palate from zipping closed (hence the cleft). This is called Pierre Robin (Pronounced roe-BAHN) sequence (PRS), and it’s difficult to diagnose early.

But the issues didn’t stop in utero; they manifest now as feeding problems. Of course, the cleft is its own problem; you can’t suck out of a straw with a hole in its side. But the placement of her tongue continues to be a problem. It’s farther back than it should be, which means it gets in the way, and it hinders feeding. There’s just not enough room. In severe cases, it hinders breathing, too.

We all want to breathe more than we want to eat, so if a baby has to choose, breathing wins every time. Thankfully, Ruth’s breathing seems fine overall. That said, the doctor recommended that we have a sleep study done for Ruth to confirm that she’s not having apneas. When your tongue is farther back in your throat, and it relaxes in sleep, it’s a risk to your airway if you’re sleeping on your back. Easy fix: We won’t have Ruth sleep on her back. The study will observe her sleep while on her side (which she prefers) and on her belly (prone) with O2. The doctor recommends and expects that we’ll go home with a monitor so that Ruth’s oxygen levels are watched through the night. It will scream at us if something’s not right and we need to reposition her.

We don’t know when Ruth will have her sleep study. It might be awhile. They apparently don’t do them inpatient and are currently booking these 8 months out. Which is unfortunate because those results would be helpful in making our plan going forward.

So if you’re interested in going into a high-need field, they need more sleep techs. It turns out that not many people want to work nights for basically forever. Of course, working nights for that long has consequences for your sleep health, so, ironically, the sleep techs eventually need sleep studies done on themselves.

Ruth’s PRS seems mild, which is why she’s mostly in the clear when it comes to her breathing. Her main challenge with breathing comes when she’s feeding. She’s struggled with coordinating her sucking, swallowing, and breathing, which leads to her trouble with aspirating, but she seems to be getting better in our 5 minute practice feedings. She’s learning! However, her feeding issue still needs to be addressed, and we have options for what we do.

One option would be that we continue the course we’re on. First, we would make a feeding tube decision. She’ll have one, so do we go with an NG tube or a G-tube? We’ve had some good conversations about this, and I think we’re comfortable with making a decision in this area soon. At home, we would want to make sure Ruth sleeps in the right positions, and we may get a monitor for her oxygen levels. If we find that Ruth has obstructive sleep apnea, she’ll be on oxygen at night. Then we would watch Ruth grow and come back outpatient for her various needs: casting her foot, that sleep study, surgery for her soft palate cleft at 1 year old, and potentially a mandibular distraction osteogenesis (MDO) surgery. The decision of whether Ruth has an MDO or not and when that would happen would depend on how she’s doing and how she’s growing. That’s the benefit of waiting.

The other option would be the same as above (still decide on feeding tubes, still monitor her oxygen in her sleep, still get her foot cast, still get surgery for her cleft), except we would pursue the MDO now. A major benefit to this is that it may lead to improvements for Ruth’s feedings sooner. Of course, there are short-term risks to this, but they seem outweighed by the long-term benefits. This surgery creates the space she needs in her throat. Doing it now is also easier to coordinate and complete while we’re inpatient instead of coming back outpatient, but we don’t want that to be a factor in our decision making.

What does the MDO entail? Basically, it’s a surgery to extend the mandible (lower jaw). First, they do a CT scan of Ruth’s jaw. This would be used to make precise plates and other pieces, specialized to Ruth, that would be used in her surgery. This means they avoid hitting things they shouldn’t, like tooth buds. 

In total, this surgery would take 2-3 hours. They make small incisions under the jaw on both sides, back toward the ears, to access the bone. Then they make a bone cut on the jaw on either side, install hardware, and for ten days that hardware is slowly adjusted multiple times a day to make the needed extension. Eventually this extension allows the tongue to move forward and provides the space for feeding and better breathing. As you would expect, Ruth would stay in the hospital as she recovers from this (temporarily in the high-intensity, highest-need NICU).

God’s design for our bodies is awe-inspiring—the bone cut paired with the extension causes new bone to grow! Interestingly, this method for bone growth was practiced on soldiers in World War II when they faced injuries on other parts of their bodies. 

The MDO hardware does protrude as small, titanium rods behind the jawline, and Ruth would go home with them. They remain in place for several weeks until the new bone created through the extension is strong enough without them. Then she would have another surgery to remove them.

If you want that explanation said differently, with some illustrations added for good measure, you can visit this website: Jaw distraction surgery.

Our new friend in ENT wouldn’t be the one to actually perform this surgery, but she is good friends with the surgeons who would. They have high-tech equipment and would perform this with excellence. It really is amazing what they can do. 

Also mentioned as an option was a tongue lip adhesion (TLA), but this isn’t as common anymore and not really on the table for Ruth. It doesn’t seem helpful in her case, and we’re glad to know she doesn’t need a tracheostomy—because that’s what we would be looking at if TLA failed.

Another option mentioned was the Tübingen protocol (think a really fancy retainer), but it seems out of reach at the moment. At least here. Give it 20 years.

Other factors in our decision include considering Ruth’s high blood pressure—which may be the result of difficult breathing due to her PRS—and the findings of the CMA (genetic test). If Ruth’s PRS is genetic, it is less likely that her lower jaw will have catch-up growth.

We have much to consider. Pray for us in all of this. We need time for just the two of us to pray and talk through it. We want to do what is best for Ruth. We want the LORD to show us what He would have us do.

We were very encouraged by the ENT doctor, who made clear that she believed we were given our parental authority over Ruth for a reason. She also made clear that she expects Ruth to have a full and thriving life beyond all of this. 

In other news, Ruth’s 1-month birthday is today. Wahoo! That happened fast. Yet at the same time, with all that’s happened, it seems like it’s been much longer than that. Time is weird. Regardless, we’re rejoicing over this small milestone.

Providentially, International Pierre Robin Sequence (PRS) Awareness Day is on September 5th. We found out that Ruth had it on September 6th. We continue to see God’s fingerprints all over our lives and Ruth’s!

ENT came yesterday to scope Ruth’s throat. This only took a few minutes, but she really didn’t like it. Her heart rate went over 208, and she had a hard time falling asleep afterwards. 

This, her blood pressure readings, and her temperature checks are some of her least favorite things. That’s why I always let the nurses do those things—even when they offer me the honor. I’ll let them be the bad guys. I’m the one taking this little girl home!

Unfortunately, I missed the ENT scope. I always seem to miss it when they dangle spaghetti noodles down Ruth’s nose. I’ve never even seen them place her feeding tube! But if we go home with an NG tube, then I'll get very familiar with it. In that case, Lauren and I will be the ones placing and checking it.

The findings from the ENT scope seemed promising at first. At rounds, our doctor mentioned that in rare cases ENT will find an issue they can fix, fixes it, and then the baby is able to feed like normal! This got our hopes up. That’s what we wanted to see!

The ENT resident who did the scope thought he saw what was causing Ruth's stridor. There was something that was collapsing or closing. This is called laryngomalacia, and it can be fixed through a surgery to clip or laser it. While we had prayed against a surgery, we realized that a surgery would be welcome in this case. If a small fix could give us a big solution to Ruth’s feeding issues, why wouldn’t we want that?

However, the resident needed to review the video with the doctor he works with to confirm what he saw. It wasn’t long after he left that he was back to take a picture of Ruth’s jaw. This resident works with a pediatric ENT surgeon, who is also the one who does cleft surgeries, and the appearance of Ruth’s jaw was the first thing she asked about. Along with this, the resident observed that Ruth’s chin appeared small, but when he measured it he said it was fairly normal. 

We waited a little longer and then got a potential diagnosis. The ENT doctor thinks Ruth has Pierre Robin sequence (and potentially Stickler syndrome too). And, get this, one of the complications can be high blood pressure. Thankfully, if this is what she has, she seems to have a mild case. Especially since it’s taken so long to diagnose. Which is the thing about Ruth. She’s borderline on everything.

Breaking news always seems to hit us on Fridays, and then we’re caught waiting all weekend, but the surgeon said she would come in over the weekend and talk with us about our options. A sleep study was mentioned, an ophthalmology consult to look at her eyes (which is another potential complication), extra monitoring while using the feeding tubes, and, of course, surgery.

Heavy on our hearts is the potential of surgery. Especially if it’s mandibular distraction. We already knew Ruth would eventually have surgery for her cleft, a cast for her foot, and would need surgery for a G-tube (if we go that route). But a mandibular distraction seems more intense yet. If that’s what needs to be done, we will do it. But it’s just a lot.

Our staff doctor said that she would like to have a plan for the coming weeks and our eventual return home by the middle of next week. What we learn from the ENT surgeon and the genetic test will have huge implications on that plan.

After hearing all of this, Lauren and I were brought really low. I walked back to the hospital from the Mac House last night crying out to the LORD. Psalm 102 has been the song of my heart these days. 

And yet, deeper still, I know that our confidence is in the LORD. Like the woman in Proverbs 31, we are learning to laugh at the time to come (Prov. 31:25). That’s how much we can trust our God—the Living God! Our strength and dignity are found in Him.

Interestingly, the book of Ruth follows right after Proverbs 31 in the Hebrew order of the Old Testament. Some scholars theorize that the reason for this order is because Ruth is the Proverbs 31 woman lived out. I’ll take that as a continual reminder that God invites us to join the Proverbs 31 woman, and Ruth's namesake, in taking confidence in Him no matter what comes. Whatever comes, may our Lord and Savior clothe Ruth Truth in strength and dignity too.

Ruth had her swallow study today. Thanks for your prayers! We asked God for answers, and He’s given them. This may not be everything going on with Ruth, but they are main things. 

Here’s what we know. 

Ruth has a soft palate cleft, and from what our SLP can tell, it keeps her from generating the pressure and suction she needs to not only suck milk, but swallow it too. She can’t do either of these things efficiently, and this has been the case since she was born.

Not only this, but she has weak throat muscles. They aren’t creating enough pressure to push milk down to her stomach. This could be the result of that viral infection she had or a genetic-metabolic condition. 

To finish, her airways don’t close because the whole process is slow and weak. This causes milk to go into her lungs and makes her aspirate. 

This all leads to a downward spiral, because as you can imagine, breathing and continued feeding gets more and more difficult the longer this process continues as she attempts to feed. 

This is all supposed to be a very coordinated process none of us should have to think about thanks to God’s design, but Ruth’s cleft, weak muscles, and open airways make it hard and stressful for her. This is why we haven’t seen progress in bottle feeding. And that's the main thing that's keeping us from going home.

A symptom of all of this is something called stridor. It’s a sound we hear when her airflow is obstructed, and it has happened even when she’s resting.

So, we need ENT (Ears, Nose, and Throat) to evaluate her muscles with a scope to see if this is something she can grow out of or if it will require surgery. We’re setting out to pray against surgery.

Hopefully ENT can also see what’s causing the obstruction to her airways. Are they just weak? Is it her cleft? Is it her slightly recessed chin? 

Going forward, we’ll go back to only two bottle attempts every 24 hours. And really, they won’t even be bottle attempts. They’re “practice feeds.” They'll only be 5 minutes each, maximum. This will give us all some breathing room as we figure out what we’re doing.

We’re not trying for quantity with these practice feeds. We don’t care about mLs now. No, it’s all about quality. We just want to give her time to practice and rest. We don’t want to stress her out or cause her to have an aversion to eating. We want to see her maintain her skill in eating, grow in it, and strengthen those muscles.

Our SLP doesn’t think Ruth will get to full feeds through a bottle for several months yet. This means we’ll likely come home before Ruth is able to feed on her own. So we’re going to need to talk through our feeding tube options, which means we’ll need to meet with surgery to talk about a G-tube.

While we have answers, we also have questions. Questions about what ENT will find, feeding tubes, and the genetic test. These are big questions, but God is giving us direction.

We’re running back to praying the end of Isaiah 40 over Ruth. Pray that we all wait on the LORD, and pray that He will renew her strength. Those two things are connected. If you have other verses that would be good to pray over Ruth, please share them!

Isaiah 40:28-31

    [28] Have you not known? Have you not heard?

    The LORD is the everlasting God,

        the Creator of the ends of the earth.

    He does not faint or grow weary;

        his understanding is unsearchable. 

    [29] He gives power to the faint,

        and to him who has no might he increases strength. 

    [30] Even youths shall faint and be weary,

        and young men shall fall exhausted; 

    [31] but they who wait for the LORD shall renew their strength;

        they shall mount up with wings like eagles;

    they shall run and not be weary;

        they shall walk and not faint.

P.S. Thank you, LORD, for the good gift of SLPs. We love them.

P.P.S This joke was cut, but I can't help but include it here. I'm not proud of it.

It seems like the strength of Ruth's swallow is probably about the same as the strength of a swallow. You know, like the bird. But I don't actually know if that's true. I'm not a doctor. I just like to play with words.

Like we have since Ruth was admitted to the NICU, we’ve been working on her bottle feeding. Unfortunately, it hasn’t felt like we’ve made much progress. Surely not the progress the doctors want to see. 

We have good attempts here and there. For the last several nights, I’ve gotten up at 3:00 AM to give Ruth a bottle attempt. Unfortunately for my sleep, this is usually her strongest attempt of the day, so I don't want to miss it.

A couple of nights ago she took 27 of her 70mLs. This was a near record for her! During this feeding, she started out slow and set a steady pace all the way. But she did so well. She didn't even need a break! She was the turtle instead of the hare. We're getting her into Aesop's Fables young!

I was so encouraged by this, especially because the problems Ruth usually faces during a feeding—like squeaking, wheezing, gagging, and aspirating—seemed to have disappeared. It was like she knew her limits and stayed within those.

While this is all good news, we’re confused.

This is because Ruth still has a lot of trouble with putting the components of bottle feeding together in a seamless way. Which results in the squeaking, wheezing, gagging, and aspirating I mentioned. Good attempts like the one I described above are few and far between.

The truth is that it’s difficult for Ruth to eat. It’s a challenge, and it’s not enjoyable. And if we’re not careful, this could cause her to have an aversion to eating. That’s definitely not something we want.

Two days ago, our doctor and her team (all new to us again since we changed floors a couple of days ago) adjusted the four phases of feeding just for us. After all, Ruth’s is a unique case. Instead of only two bottle attempts every 24 hours, they said Ruth can now take a bottle anytime she wanted. Even back-to-back. We just follow her cues. 

But instead of making feeding better for her, it seemed like it only made it worse. More feeding attempts means more practice, but more practice means a more tired baby. The increase in quantity seems to have resulted in a decrease in quality.

It’s not just about the numbers, though the mLs have dropped. We're learning that it's about the experience Ruth has feeding—which is greatly affected by how tired she is. I don’t blame her. I’m a grouchy bear if someone wakes me up. Nearly as bad as Mor'du.

This all just means we need even more discernment in knowing when we should give her a bottle attempt and when we should give her a break and just use the feeding tube. It’s hard to know! We need to ensure we don't force it. That’s a real temptation when you want to see progress. In our minds, progress doesn’t look like rest. I think there’s a good lesson about sabbaths there. 

We trust our speech-language pathologist most in this. She seems to get it. She’s hearing us out, and she’s helping us identify problems. Her observations have been hard to come by—only because Ruth has slept through the majority of those feeding times set aside for observation. Which doesn’t seem like that much of an issue, but it concerns the SLP. Ruth should be waking up for these.

Now, after all that our SLP has seen, Ruth will be getting a swallow study done today. I don’t know all the details about how this works, but I know Ruth will be very hungry, they will give her milk with a dye added to it, and then they will take an X-ray video her. Side effects may include the ability to shoot lasers from her eyes later in life. 

We’re praying this gives us conclusive answers. More than any other test, we want this one to show something. This is because we think something may be structurally not quite right for Ruth. It’s not uncommon for babies to have weak airways, but they grow out of this. If it’s a bigger problem for her, and the cause of her aspirating, we want to know. This could be a major determiner of our plan going forward. It may also give us some room to breathe from all of the bottle attempts.

Ruth’s swallow study is at 1:00 PM. Please pray that it will go well and that the Lord will use it to give us some answers.

In other news, Martha and I got stuck in an elevator for 30 minutes. It just clunked out on us. A fireman had to come save us. Toddlers aren’t my first pick to share an experience like this with, but we made the most of it by calling family, knocking on the door, and telling stories. I’m very thankful she didn’t need to potty. God was gracious to us and kept us both calm as cucumbers.

We’ve been in Iowa City for a week and a half now, and while we’re establishing new routines and rhythms, it’s not home.

It’s an isolating experience. We’re disconnected from what’s happening in the world (I haven’t read the news in a month) and at home. As I’ve said before, our world is a hospital room right now. 

Since we’ve been in the NICU, and even since Ruth was born, we’ve received so much support in so many ways. The Lord has truly blessed us with so many people who want to help!

As I've considered these things—our disconnect from current happenings and people’s desire to help in a tangible way—I came up with an initiative I’m calling Updates from the Home Front. 

This is a tangible way you can minister to Lauren, me, and even Martha. By necessity, we've been inward focused. But this is no way to live long-term. God made us for community, and we miss ours! So like soldiers on the battlefront who long for home and receive letters from loved ones with joy, we want to hear from you!

These updates don’t need to be anything elaborate. We just want to hear about the mundane, everyday happenings in your lives. What are you up to? What are the kids up to? How can we pray for you? We’re especially eager to hear updates from Cedar Heights Baptist Church, Cedar Falls, and UNI, but we're happy for any and all updates sent from family, friends, long-lost connections, and even strangers. If we don't know you, just introduce yourself.

Aside from updates, we also welcome Scripture passages, devotionals, or articles that encourage you and would encourage us. Mail specifically for Martha is welcome too! (She likes drawings and pictures.)

We'll read everything you mail us, but please understand that we likely won't have the capacity to respond. We do prefer physical mail instead of texts or emails for this initiative. The digital world is quickly overwhelming and too easily lost to the void.

If you’re interested in sending us updates from the home front, you can mail us here: 

University of Iowa Stead Family Children's Hospital

Neonatal Intensive Care Unit

Ruth Johnson

200 Hawkins Drive, L6 SFCH

Iowa City, IA 52242

We were given a new room tonight. We’re now in L6 of the shiny, new Stead Family Children’s Hospital. This is the building just adjacent to where we were. Over here they have what is called the step-down NICU. This is where the more stable babies go. The ones who need less maintenance. It will hopefully be the launching pad to get us home. Though if we’re here longer, we may get moved to another floor. We’ll see.

My favorite part about this new room is the window. It’s big. My Buick Verano could drive through it with space to spare. Now we’ll be looking at Kinnick Stadium all the time. We still can’t see the field, but we can see even more of the stands as well as the northern Jumbotron. If we had been in this room on August 23rd, we would have been at eye level with the fireworks they launched for the new freshmen. 

This is definitely something to be grateful for as our last room didn’t have a window. One time I woke up with so much sleep in my eyes I thought it was 8:00 AM instead of 3:00 AM because the lights in the hall confused me. But with this window, we have the sun! I think natural light will be especially good for Ruth. My daddy-sense tells me this.

This part of the hospital is new. It was built in 2017, and it has all the bells and whistles. It’s clean, it’s quiet, it’s sleek, and it’s spacious. This is a completely different feel than what we've had. In a way, I miss the hustle and bustle of NICU Bays 2-3. We actually saw people there. We had to walk down the hall to go to the bathroom. 

This is my main thought after putting my powers of observation to use in this new room: I feel like I’m on the spaceship in WALL-E.

Here, we have a good-sized TV, the room’s blinds and various light settings are controlled by buttons in an alcove, the flush of the toilet sounds like a military jet flying over your house, there’s an iPad on a stick, and there’s a speaker that will read and sing to your baby. I wouldn’t be surprised if robot room service rolled through the door in the morning. 

I feel dangerously luxuriant. Almost guilty.

But really, I’m humbled yet again. Who are we to be here? It’s one thing for God to provide in ways that meet our needs. It’s another for Him to provide in such lavish, over-the-top, profusely plentiful ways! And He just keeps doing it!

From your prayers, to your financial support, to your check-ins, to so many meals, to parking passes, to the Ronald McDonald House, to this hospital room, to the care we received in Waterloo and now in Iowa City, God has met our needs in abundance.

But as grateful as I am for all that God has given us in these things, and I am ever so grateful, I just can’t help but say that it’s peanuts compared to what He’s given us in His Son, Jesus Christ.

In the perfect life, painful death, and powerful resurrection of Jesus, God has met our need with abundance we cannot even fathom. Jesus satisfies our need for salvation from sin, reconciliation from rebellion, redemption from brokenness, righteousness from unrighteousness, peace from wrath, life from death, and it goes on! Jesus took what we deserved to give us what we didn't, and He does so abundantly.

How do we inherit such beautiful things? With some help, Martha Mercy can tell you with a verse: “For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life” (John 3:16). This inheritance is a free gift to any who turn from their sin and truly trust in Jesus Christ as their Lord and Savior. He is better! He is the only way!

Jesus Himself made clear that there is no other source of salvation. One day Ruth Truth will tell you with a verse: “Jesus said to him, ‘I am the way, and the truth, and the life. No one comes to the Father except through me’” (John 14:6). There is no other Redeemer. And more soberingly, there is no other Judge. 

This isn’t a call to simple transaction. I viewed the Gospel as a get-out-of-jail-free card for far too long. Those are dangerous waters to swim in—when you think you're safe but you're not. I didn't really want God; I just wanted to avoid His wrath. That is the alternative without Christ. But I had my eyes set more on the punishment than on the prize.

This is a call to a life centered around Christ—following Him in obedience and treasuring Him to the utmost. Don’t settle for being a Christian just by name. That won't do anything. Check your heart to see if you’re a Christian by heart. This is what truly matters. This is nothing you can earn. This is an act of surrender and faith. This is a free gift to be received by grace alone through faith alone in Christ alone.  

This is what we pray for our girls. Every day they remind me that it’s simple, but it’s not easy. It’s hard, but it’s worth it. Jesus, Thank You!

P.S. We found the name tag in the picture on the floor of one of the five elevators that take us to NICU Bays 2-3. Out of all the elevators we could have gotten on… Out of all the names that could have been on the name tag… Another awesome reminder of God’s providence!

As I walked back to the Mac House from the hospital this afternoon, I was reflecting that different is normal for us now. Or our normal is just different. 

The best illustration of this is the now-normal routine we follow to see Ruth when we arrive at the hospital.

After we come up the elevator from the parking garage, or go through the big glass doors if we've walked over, we check in at the security station. We tell them we're visiting Ruth Johnson, and then we give them our names so they can slap name tags on us. Once we're clear there, we walk through more glass doors, down a hallway, and go up to the sixth floor. Then we go down another hallway to Ruth's NICU bay. There are more automatic doors here, which open into a waiting room. If we go upstairs we can find the NICU family lounge which has couches, chairs, a TV, a fridge, a microwave, some bathrooms, and even a shower. If we go to the end of the waiting room, I pick up a black telephone which rings the check-in desk. I give them Ruth’s name and then my name, and they open the doors. Once through, we wash our hands at the sinks and show the person at the desk our wristbands. Then we can go back to see Ruth. If Martha is along, we follow all of the same steps, but she pushes all the buttons.

A week ago, this was strange to us. We felt lost going through these motions. Now we do them without thinking. As I reflect on this, it makes me long for the day we can take Ruth home and have our chunky, little baby playing on the floor with only the front door separating us from the outside world. We won’t take that for granted!

Don’t get me wrong, I really do appreciate all of these precautions. They're important. There are families with kids here who are much sicker than our Ruth. Today’s nurse told us that the average stay in the NICU ranges from 70-150 days, but there are kids who are here longer than that. We've only been here for a week, but it feels so much longer. I can't imagine what months would feel like.

Part of our new normal includes figuring out our daily rhythms. This is what seems to work best for us at the moment: 

Overnight, I sleep in Ruth's room at the hospital, caring for her as needed. Back at the Mac House, Lauren does Martha's bedtime routine and puts her to bed. In the morning, they have breakfast, and either Mima (my mom) or Grandma (Lauren’s mom) spends time with Martha while Lauren comes to the hospital. We take part in rounds, and then I come back for Martha’s nap, and sometimes lunch beforehand. When she wakes up, we head over to the hospital to see Mommy and Baby Ruth. After time together there, everyone but me comes back to the Mac House for dinner while I order my one free meal from the hospital. They spend some time playing after dinner and then go to bed. I take care of Ruth, eat, and maybe find time to do other necessary things. Then I go to bed too. Right now, this seems to work. Things change here or there, like if we go exploring, do an activity, or go to church, but that’s the gist of it.

And as we’ve settled into this routine, Ruth has found her own. She sleeps great during the day with a few, interspersed wake periods. At night, she has more wake periods, typically around 3:00 AM, and much more restless sleep. That little night owl. We’re not sure if her days and nights are mixed up, or if that’s just who she is right now. She is often fussy in the night, either from being hungry or gassy, but sometimes it’s hard to tell which when you’re a half-asleep zombie. 

Last night Ruth and I had a 3:00 AM bottle attempt. I was very happy with it! She took 23mLs. But even better than the number was the effort. She kept working at it—even after a couple of short breaks! In the past, if we took a break, it was game over. But last night, when I thought we were ready to try again after our breaks, I said, "Ready for more?" or “Please take this,” and she started going after it again. My résumé now includes Baby Coach. Jokes aside, I’m proud of her! She was a determined little peanut.

We have noticed Ruth’s blood pressure readings are slightly higher overnight, which can only mean one thing. She’s a werewolf. Now is that from Lauren’s side or mine? Overall, though, her blood pressures are coming down and seem to be normalizing. Thank you for your prayers! God is sovereign over this.

Ruth did earn a lab break, so she won’t get so many heel pokes for blood draws. Instead, she will only get those on Tuesdays and Fridays. If she doesn’t like anyone touching her feet in the future, this is why. And if she steps on a nail and doesn’t think anything of it, this is also why. 

We did find out that Ruth's weight and her head circumference are following a healthy growth curve. This puts our concerns in these areas to rest.

We're giving so much thanks to God for these updates! We have full hearts. Our cup runneth over.

Tomorrow we start a new week of results, meetings, and consultations. The agenda includes speech-language pathology, physical therapy, and genetics. We also hope to meet with the cleft team again, possibly ENT, potentially pediatric orthopedics, and maybe a dietician.

That's a lot, but we’re thankful that there’s less mystery and more progress. That’s a blessing and a gift from God. 

Since I cheated you out of an update on Ruth today, I thought I better make it up to you. But this update is going to be a bit different. 

Through this ordeal, I’ve seen God at work in our marriage. Not only has He strengthened it through this trial (just as He has our faith), but He’s also used it to keep either of us from drifting away in the sea of despair. When one of us is discouraged, the other is typically encouraged. These past couple of days, as I’ve felt discouraged, Lauren has encouraged my heart. She’s done this by reminding me of the Truth and by sharing the improvements she’s seen in Ruth. What a good gift from God! 

I want to share that encouragement with you, so I’m including a a few lightly edited text messages that Lauren shared with me this afternoon. Besides, you usually hear from me; it will be good to lend her voice to an update.

But before we get to those, some updates on Ruth.

Ruth is averaging 29% bottle completion. This was a couple of days ago, so it might be different now. Possibly lower. But that's okay. Lauren's reminded me that numbers aren't the most important thing. Practice and a good experience are.

The doctors seem to think the genetic test will give us the answers we’re looking for early next week. I’m not so sure about that at the moment. At one point I wanted some sort of result just so we had answers, but now I want it to come back with nothing just so we can focus on what really seems to be the problem: her cleft. Besides, she's aced every other test. Why not this one too? God can surely leave a trail of healing, miracles, and redemptions behind Ruth.

After careful observation, we are more and more convinced that Ruth’s soft palate cleft is giving her more trouble than anyone realizes when it comes to feeding. We hope to advocate for a swallow study when the speech-language pathologist visits us on Tuesday. 

Ruth still isn’t back to birth weight. That’s sobering. But she seems to be making gains at the pace the doctors want to see.

We did end up having the neurology team come by for a consult. Ruth’s doctors thought it would be beneficial. They left with nothing to report. We’re thankful for that.

We’ve seen some crazy answers to prayer regarding Ruth’s blood pressure. There’s one story in particular that you’ll have to ask Lauren about, but this text she sent me pretty much sums it up, “[Ruth’s] lowest [blood pressure] readings from the last 24 hours have been the ones I’ve been here praying during.” Praise. The. LORD!

Lastly, Ruth has a new doctor on the team, and she seems great. We heard excellent things about her, and it was all confirmed when we met her. To give you an idea of what she’s like, I’ll just say that for the last week of rounds, the team stands outside the door, goes through the numbers, and talks amongst themselves. We just listen in. Once they’re done, they give us some updates and see if we have any questions. But not this doctor! While everyone was getting comfortable in their normal positions, she said, “Why don’t we just go in so that mom can listen in too?” (I was standing by the door; Lauren was sitting in a chair further back.) So in she came and the others too. Then she took a seat, and for the first time, we were really a part of rounds. After all, as Ruth's parent’s, we’re her primary caregivers. Needless to say, we like this doctor, and that feels good. 

Now, for what you didn’t know you wanted but surely needed—encouragement from my dear Lauren. 

“My heart is encouraged for today. [Ruth] looks healthy and has been moving her little arms all over the place. I don’t know God’s plan for her feedings and vitals, but I’m thankful for developmental progress regarding movement, crying, wakefulness, etc.”

“Prayer IS the best medicine. God is more powerful than anything.”

“My intuition tells me we won’t go home with a feeding device. But we need to pray big.”

“I’m asking God to do a mighty work in helping [Ruth] turn the corner this weekend. That she would put on weight, increase in strength, improve her endurance, stabilize her blood pressure, and begin to grow in her feedings by mouth. ALL things are possible with God. May HE receive all the glory; He is sufficient and sovereign over all of this medical technology. I’m asking Him to deliver her from the prospect of a feeding tube and give her strength to eat on her own at home. It may keep us here for a few weeks longer, but His timing is perfect, and He knows what she needs. May we have wisdom to make decisions with the doctor’s input in mind but with our intuition from God at the forefront as we trust Him to provide everything she needs. He’s faithful and loving even in this hard place. Thankful for precious Baby Ruth and the way her life has confirmed the Truth of who God is to the deepest part of my soul.”

O, I have found a good thing, I have obtained favor from the Lord (Prov. 18:22). I have found she who is more precious than jewels (Prov. 31:10). All I can say is, “That’s my wife!”

(And she has no idea I posted this.)

It’s the day everyone‘s been waiting for. Not the day that Ruth’s blood pressure readings were normal, or the day she that took a whole bottle, or the day she was discharged… None of those days have arrived yet. No, it was the day of the first Hawkeye football home game. 

Roughly 70,000 fans come to watch the Hawks play at home here in Kinnick Stadium. And, in a way, it’s comforting to know that after thousands of years people really haven’t changed. Packing a stadium for spectacle is still one of our highest forms of entertainment and recreation. Our gladiators just look different. More civilized.

The Iowa Hawkeyes start the season with three home games in a row, so our Saturdays will be locked down for a couple of weeks. Next week they’re playing the Iowa State Cyclones, which I predict will be completely bananas. This week was really just a warm-up.

The staff at the hospital and the Mac House started preparing us for game day earlier this week. We were warned not to drive. If we did, we wouldn’t get anywhere, we wouldn’t find a parking spot, and we would lose ours. Then they told us which roads were closed and what to expect with all the tailgating. They also gave us information on the wave as well as some swag. I know there are various opinions out there, but good or bad, Ruth now has a hand-knit, black-and-gold, baby hat. We haven't taken it out of the bag yet.

I wasn’t enticed by the game or the tailgating, but I was intrigued. On paper, I don’t see why this is considered fun. But after seeing several of the set-ups as I walked between the Mac House and the hospital, I can see why some people might really get into this. I didn’t know tailgating could be so elaborate! I mean, people had TVs!

Really, we were most interested in watching the people as they streamed and massed here and there. It’s fascinating—and often amusing. 

I’m sure I was the source of amusement for anyone watching me this morning. Dressed in black shorts and khaki-colored shirt, which was the closest I had to yellow and gold, I walked the half mile over to the hospital. In one hand I ate a cold, Starbucks sandwich donated to the Mac House, and in the other hand I carried two bags of my wife’s breast milk. I didn’t trust it in my purple backpack.

After that description, it sounds like I would stand out. But I really didn’t. No one paid any mind to me. But if they had, I would have been ready to tell them that I’m a real man.

Game day provides an interesting juxtaposition. Our world is a hospital room right now. That’s everything. But, just a block away, 70,000 people reminded us that the rest of the world is still moving along. We’re frozen; they’re flowing. 

But that’s the nature of being heavy-laden. It takes a lot of surrender to God and trust in Him not to grow bitter and resentful toward those who appear so carefree. 

But just for a moment, a few minutes after the game's first quarter, those carefree thousands turned toward us. They heeded our cares, and they waved. We weren’t on the 12th floor, those tickets are reserved for patients over 2 years old, and we couldn’t see the field. But we could see some of the stands from windows down the hall with blinds that couldn’t be adjusted. And when the world waved as they passed by, we waved back.

Of course, the four phases of feeding only apply if Ruth is actually able to progress through them.

We haven’t thought about what would happen if she isn’t able to progress through the phases. We didn’t even know that was a possibility.

But that’s what’s on our minds tonight as we go into this long weekend and the coming week. Because Ruth’s case is being discussed. And word on the street is that this next week is a big one for her.

Much hangs on the results of a genetic test, the observations of a speech-language pathologist, and some bottle attempts. 

Based on the above, we anticipate a plan will be made. Will Ruth be able to progress through the feeding phases, will she be stuck with an NG tube (a feeding tube in her nose), or will she get a G-tube (a feeding tube through her stomach wall)? Oof. We really don’t prefer that last option. 

None of this is confirmed, and maybe there’s another option we haven’t heard yet. But we’re bracing ourselves.

Again, what else can we do but pray? Ruth’s feeding, and our ability to come home, is out of our control. That’s humbling. All we can do is seek the Lord in this. Please join us. We still need your prayers. It’s not out of His control.

There are four phases of feeding that Ruth will need to pass before we can bring her home.

We’re in Phase 1. So we might be here awhile. Maybe even a couple of months. It’s so hard to predict, but I’m beginning to pray that we can come home before October. 

To graduate from Phase 1 and move to Phase 2, Ruth needs to complete 75% of the two bottle attempts she gets every 24 hours. Currently, she’s completing around 25% of her bottle, give or take a few. Her record is 40%!

In Phase 2, Ruth will get four bottle attempts in 24 hours. She will need a 75% completion rate to move on to Phase 3. In both Phase 1 and Phase 2, none of her bottle attempts can be back-to-back.

Ruth will get six bottle attempts in Phase 3, and she will need to complete 75% of her bottles again to get to Phase 4. Her attempts can be back-to-back in this phase.

In Phase 4, Ruth can eat whenever she wants. We’re following her cues as much as we can in those first phases, but she really gets to drive the bus in this phase. In order to say goodbye to that feeding tube and come home with her NICU degree, Ruth will need to complete 90% of her bottles. 

Honestly, it’s a bit discouraging to see Ruth struggle to do something that seems so basic for most babies. This is one of the only responsibilities a baby has, and they are meant to master it. But it’s been a good reminder for us that we’re a team in this. She has to put in the work, and we have to put in the work. If she doesn’t, she’ll have to go warm the bench until she’s ready to get back in the game. But that time to rest might be exactly what she needs.

It seems like a long road, but I’m hopeful that once she starts to get used to feeding, she will begin to take off. We just need to build some muscles and momentum.

Pray for us in this. We have a basketful of techniques and tips, but the only thing we can really do to help Ruth improve in her feeding is to pray. 

After all, Prayer is the Best Medicine.

Typically, I write these updates late in the evenings while Ruth is sleeping, and I’m in her room alone. But last night my dear wife stayed at the hospital with Ruth while I went to the Mac House with Martha. The Mac House is what we affectionally call the Ronald McDonald House. It’s easier for Martha’s mouth to get around. But if we’re feeling really hungry, we call it the Big Mac House.

Anyway, that’s why I didn’t get an update out last night. I fell asleep with Martha! So, here’s the latest.

Ruth’s MRI is as normal as normal can be. I already wrote an update about this, but I’m saying it again because all the double and triple checks are now confirmed as normal too. In fact, she’s so normal that the neurologist doesn’t even want to see her. That’s a good thing!

Her EKG test, the one that measures electrical activity in her heart, also came back normal. She also passed her hearing test, she had normal urine labs, and her CMV test came back negative! She’s acing these tests. We’ll sign her up for the ACT next. 

The urine test was to check her sodium chloride levels. While she passed the test, they noted her levels are a bit low, so she is getting a few doses of sodium chloride in her feedings. I didn’t know this, but apparently babies need salt to grow. Just remember, babies are different than plants. They’ll probably do another urine test tomorrow. 

The CMV test was to see if Ruth’s small head circumference, which sits in the fifth percentile, was due to a viral infection. Since that test was negative, we can rule out the viral infection as a cause for that. We're not yet sure if she has a small head circumference due to a condition, which would be genetic at this point, or if it's just on the small side and there's no reason to be concerned.

Ruth’s weight is slowly increasing. We want to see more increases here as she’s still not back to birth weight. Other than her 100 gram jump from a few days ago (which surprised the nurses so much that they checked it twice), we've only seen incremental increases.

Ruth’s blood pressure was still up yesterday, but it started to drop this morning. This is expected as her blood pressure medicine begins to take effect. However, the last reading was on the low side, so the doctors are watching it, collecting more data points, and we’ll adjust accordingly. Pray that it normalizes, and pray that she can come off blood pressure medicine.

We still have a very sleepy baby. Yesterday, more than normal. We’re taking this as her way of telling us that her body is still healing and, we pray, growing! She had a good wake period this morning, and we were very thankful. We love this girl! She’s precious. Sometimes I stroke her head and say, “My precious,” just to creep Lauren out. 

In other news, Ruth got another bath, and she received a crib. It’s a small thing, but it makes the place feel a bit more cozy. Especially when she has pretty little bedsheets. Ruth may be getting a taste for interior design. Her mama and I would welcome the help!

We had a tired peanut on our hands today. After her big day yesterday, Ruth wanted to sleep! We were fine with that, especially because she’s been smiling in her sleep a lot more. We're tickled by that, and we take it as a sign she’s getting better.

But aside from the wonderful news that her MRI was normal, which was checked and checked again by neurology and radiology, what else happened?

Every morning the doctors, residents, and nurses do rounds. This is our major source of updates each day, and it's where we learn the plan. 

This morning, Ruth got bumped up to 70mLs per feeding. We’re aiming to see her gain weight, which must be working because yesterday she put on 100 grams! If we can get her more calories through increased quantity, we don’t need to add a fortifier (which adds calories without increasing quantity). So that's our aim.

Because Ruth's blood pressure is high and really concerns the doctors, she had an EKG scheduled. Where a TnECHO looks at heart structure, an EKG looks at the heart’s electrical signals. It went quickly, especially because Ruth was so calm and tired. With all the wires connected to her for the test, she looked like some sort of baby electric cyborg squid. Or maybe just Doc Ock’s kid?

Her TnECHO came back fine but was described as borderline. I’m still not sure on what that means. But as I understand it, there were no problems clearly identified. However, there is concern that her heart is working too hard. So the hemodynamics team referred us to the pediatric nephrologists. Those are kidney doctors, not kidney beans, in case there’s any confusion. 

And while I’m tangenting, can we just marvel at how specialized things are here? There are specialists for the specialists. I’ve not thought much about doctors who specialize specifically in kidneys, but I’m not surprised they’re out there. But in addition to that, there are doctors specializing in the kidneys of kids! That's a bit more fascinating to me. What knowledge we have available to us! I just have to drop Colossians 2:2-3 here. Look it up.

The pediatric nephrologists let us in on a fun fact. Our blood pressure is actually determined by our kidneys. Fancy, eh? If you want to know more about how that works, I’m sorry, that’s all I’ve got. But why is Ruth’s blood pressure so high? We’re still not sure. It may just be because of all that she’s gone through the last couple of weeks. If it’s as simple as that, it just goes to show us how intelligently designed our bodies are. 

The member of the pediatric nephrology team that met with Lauren (I was away from the room), said that elevated blood pressures in babies is common and recommended putting Ruth on a small dose of blood pressure medicine. We don’t want her heart working so hard that it becomes enlarged from the effort, so the medicine should help with that in a few days. Pray that her blood pressure comes down to a normal level. We’ve seen God answer prayer mightily; we know He can do it again. 



At nine, a speech-language pathologist came to see Ruth bottle feed. But… Ruth slept through it. So the SLP came back at noon and arrived at the door right as Ruth woke up. This seems a small thing, but it was a clear answer to what Lauren and I were praying just minutes before. After observation, the SLP gave us some really helpful pointers in bottle feeding Ruth. For that, we were very thankful. 


Also, somewhere in there, a lactation consultant came and talked with Lauren. This was another moment of answered prayer. Lauren and I were praying together, and as Lauren prayed for understanding regarding pumping and her milk supply, there was a knock at the door. It was a lactation consultant. More pointers were had from the meeting, and Lauren was helped! Thank you, God!

Finally, two more answers to prayer came through today. Ruth came off of oxygen this morning and is doing so well. Sing praise! For every wire that we can disconnect, we celebrate! I keep joking that I can't wait until they start making wireless babies.

And on top of this, tonight she took 30mLs of her allotted 70mLs. That’s a record! We’re jazzed. Yes, we’re still in feeding school, but, finally, some good progress in this area. More to come! This, along with her high blood pressure, are our two main focuses and primary prayer requests right now. If we get those figured out, we can come home. And oh, do we long to be home...

Yet to come will be the results from Ruth's CMA (Chromosomal microarray analysis). But the genetics team won’t have the results for that for 2-3 weeks. Otherwise we just need to see if we will have our pediatric orthopedic appointment next week for Ruth’s club foot or if that will be rescheduled.

We’re finishing the day with grateful hearts filled to overflowing. We give testimony to our Heavenly Father’s hesed. He's lavished us in it.

Ruth got a good taste of the Mondays!

But before I fill you in on all that happened today, here's a short reflection I wrote as I considered all the tests before us and their pending results. My conclusion: There is a Redeemer. To see my other reflections that won't make it on this update page, you can visit this website: https://world.hey.com/avery. There's more to come.

We started the day with the hemodynamics team. Out of all the teams we've met, I think this one has the best name. Throw that on your Scrabble boards! Anyway, they wanted to look at Ruth's heart again due to her high blood pressures, so they did give her a TnECHO. The results came back with no major findings, everything looks normal, but they're going to do one more review before that's finalized.

Next, a physical therapist stopped by to work with us on Ruth's club foot. She had worked with Dr. Pontseti himself (who developed a non-surgical method to correct clubfoot in infants), and had voice and a touch that aimed and relaxed Ruth and us! We were excited to be trained in a practical way to help Ruth. It's to be determined if she will need casting or not, but it looks likely that she will. We have a meeting with the doctor for that next week.

Next came the genetics team. They asked us all about the genetic history in our families. Then they looked Ruth all over. As we've known for a week now, the conditions that she has are all minor in and of themselves, but because they all come together in her, she merits a genetic test. Apparently her soft palate cleft is uncommon and greatly increases the probability that this is genetic. So we will proceed with the genetic test and get the results in 2-3 weeks. Further testing depends on what they find in that initial test as well as her MRI results.

What's the point of a genetic test? Well, at most it could identify the condition or syndrome she has and give us a plan and path for her care. At the least it might tell us that this is an unknown. Otherwise it might provide some closure or tell us this is all benign. In some way, we expect it to be helpful.

Two doctors from ENT (Ear, Nose and Throat) stopped by as well to look at Ruth's soft palate cleft, and asked a few questions. It was more of an introduction than anything. We'll see them several months from now when Ruth is old enough and strong enough for a more thorough evaluation and surgery.

Lastly, Ruth got squeezed in for an MRI tonight at 9:00 PM. She just got back as I'm writing this. Tomorrow we expect to hear those results. Pray for our hearts to be ready to receive whatever news the Lord has for us. I'm thankful that He's brought me to a place not of mourning or self-pity or fear, but of gratitude, love, and joy. It is truly a blessing to have Ruth, with all her challenges and mysteries, as our daughter. God has given us a great gift in her!

To top it all off, we have a few fun updates too! We've had great nurses thus far, but today we got one of the best. Shout out to Austin! He shared a lot with us today, and he moved us to a new room. This was a big blessing! The room we had was more of a curtained cubicle. Opened all the way up, it fits triplets, but modified for an individual baby, it was a small space. So we happily exchanged three curtains and one wall for three walls and a door! It's quieter here and more spacious too.

On top of all of this, we found out tonight that we got into the Ronald McDonald House! Praise the Lord! What provision upon provision! I have not been there yet, but Lauren told me it is amazing. She was tearing up at several points on the tour. This is a huge answer to prayer as it lifted Lauren's spirits and provides for Martha's needs (she's coming up on three). It's been too hot for her to be outside, she's exhausted much of the spaces we can take her too around the NICU, the children's museum is closed this week for cleaning, and it's not super conducive to take her to a bunch of different places around Iowa City. But now, at the Ronald McDonald house, it sounds like Martha won't have to leave for a few days. This brings much peace to my dad heart. I'll have to have Lauren write up all that RMH includes. From what I've heard, I'm amazed.

P.S. It seems that the consensus is that Ruth is a cute girl. It seemed like everyone told us this today! And they said it in such a way where it didn't seem like they were just being polite. It was genuine. Just another reason to be thankful—my partiality has been affirmed by unbiased opinions. ;)

Today, we wait. The big day is tomorrow. That’s when we’re expecting to get Ruth’s MRI and meet with a pediatric neurologist. This should provide more conclusive answers and even a plan going forward for her development.

Ruth will also likely get some genetic testing done, so we may meet with that team tomorrow as well as the team for her soft palate cleft.

But what does today hold? 

Ruth continues on oxygen as we focus on feeding. She’s taking 15-25 mLs from a bottle of the 62 mLs she gets total in a feeding. Whatever she doesn’t finish from the bottle goes through the feeding tube. She gets two bottle attempts every 24 hours, and she gets fed every three hours. Once she is able to consistently complete 75% of her allotment through bottle, she can move on to phase two of feeding.

Her sodium was a little low, so she’s getting a small supplement in her feedings to see if that helps.

Her weight has slightly dropped since yesterday. Nothing needs to be done here at the moment. Small fluctuations are normal.

Every now and then Ruth’s blood pressures are on the high side. When they’re high, they’re in the 95-98 percentile. We’re not sure why this is the case, so it’s an area to watch.

Ruth loves to sleep! Especially in our arms. But we’ve been thankful to note that she’s waking up for her feeding times. The nurse said this is great! Around nine this morning, she had a long awake and alert period. We like to be with her for those, either talking to her, praying over her, or singing to her. 

Oh! And the last item on the agenda for today—a bath!

Continue to pray that Ruth will learn to feed, that she will grow, and that God will give us conclusive answers in the coming days. 

Pray too for our hearts. This trial, the time in it, and the unknown amount of time yet to come is wearing on us. Pray for our marriage, pray for our hope in the Lord, pray for Martha, and give thanks to God for the help we have in Lauren’s mom and my mom.

Isaiah 40:31

     But they who wait for the LORD shall renew their strength;

        they shall mount up with wings like eagles;

    they shall run and not be weary;

        they shall walk and not faint.

We were deeply touched to see our church family at Cedar Heights Baptist Church rally around us in prayer during the service this morning. That was beautiful. In God’s perfect timing, I was actually praying over Ruth and holding her head when I found out you were all lifting her up to the throne of God!

We arrived in Iowa City yesterday. Ruth rode in the ambulance and made it here a few of hours before we did (we had to pack).

They really know what they're doing here. They ran all the tests (and more) that she had received at MercyOne in Waterloo and received results in just a few hours. When it comes to the major issues, Ruth passes!

Of course, something is off, otherwise we wouldn't be here.

But Ruth already looks so much better than she did a few short days ago. Her color is back (she was so pale), she looks less gaunt, she's awake more often, she's more energetic with her bottle. Her teams are taking really good care of her. They even made her a little sign decoration for her door and bows for her too! And all in purple, of course, because big-sister Martha insists that purple is Ruth's favorite color.

Coming in, Ruth's blood pressure readings were high, which was a concern, but she passed the tests looking at her kidneys and veins. Since then her readings have been more normal for a baby her age. 

Her oxygen is looking good! She was brought down to .5L today. It was a bit of an adjustment for her, but she did well. We look forward to her coming off her oxygen in God's good timing. 

She received a small increase in the amount of milk she received at each feeding. Depending on her progress with feeding, more might be coming. Whatever she isn't able to take with a bottle (which is more than 50% at the moment), she has to take through her feeding tube. As you might imagine, Ruth is still in what they call phase one when it comes to feeding. So we look forward to seeing her graduate to the next level! We'll keep working on feeding. We're learning together. It's a team effort.

This isn't confirmed yet, but her feeding reflexes may be lacking because the right and left hemispheres of her brain aren't communicating with each other. This affects coordination and a whole bunch of other things depending on the severity. To confirm whether this is truly the case or not, Ruth will get an MRI on Monday (8/26). Once we know the extent of her condition, we'll be able to put together a plan with a pediatric neurologist.

We'll also likely meet with the cleft team (she has a soft palate cleft), and the genetics team on Monday. It may be that she has some sort of minor genetic condition which has caused her cleft, club foot, recessed chin, small head circumference, and brain abnormalities.

Pray for us as we approach Monday (8/26). It will be a big day for our little Ruth—and us. 

Lastly, praise God for providing for our family today by securing a space for us with the Rossi Guest House Lodging Program. We are so thankful for His provision. Jehovah-Jireh!