New Year, Same Evan

2019 has been pretty good to us so far. We have deepened new friendships, rekindled old ones, and spent lots of time snuggling our sweet boy. We’re tired, but that is normal for parents of a nine month old, so I’ll take it. Now that we’ve been steadily out of the hospital (knock on wood) for a while, we really have Evan in a set routine which has been so good for him. He is so easily overstimulated still which from my research is a product of NICU life that may not go away until he is out of toddlerhood. All these little disruptions he gets can throw him off for up to a week at a time.

January was mostly quiet for us. Evan did start this lovely liquid poop trend that has continued into late February, so that hasn’t been fun, but I am trying to find as much comedy in it as possible. Speaking of comedy, he also has gotten really good at pulling his cannula out of his nose. I take pictures of it to document his “success” in the #cannulachronicles. Some may say that’s poor parenting to take a picture rather than quickly pop in back in his nose, but I just see it as opportunities for room air trials to help him get stronger with his breathing……and it’s just really funny…okay, mostly it’s the funny thing. I’m still waiting on my “Mom of the Year” trophy.

“the mouth breather”
“O’s in the I’s” …get it?
“walrus”
“hmmm….do I really need this?”
“night mischief”
Saturday morning.

I mentioned in my last post that we figured out Evan was having a skin reaction to his cranial band (helmet) that he needs to wear to help fix the shape of his head. Up until early January, we weren’t able to give it a true try because of all of Evan’s doctor appointments and hospital stays. The goal is for a kid to wear it for 23 hours a day at least in order for it to be effective. However, our little guy has trouble breathing if he is wearing it and lying flat because of the angle it places his airway, so sleeping in it isn’t really in the cards for him. So the best we would get would be 15 hours a day if he wore it from the time he woke up in the morning until bedtime. The second week of January, we committed to weening him back into wearing it as much as possible. Well, he wore it most of the day with short breaks every day that week aside from when we went out for appointments (he lays flat in the car and breathing is kind of touch and go in the car anyway) and when he was sleeping at night. By Thursday, his eczema and cradle cap looked like they were out of control. On Friday, we saw out pediatrician and she advised us to take a break from the helmet since his little head was so red and irritated all over. Saturday, we ended up in the emergency room after calling the on call pediatrician because his skin had flared so bad we were worried it was getting infected because the skin had broken down so much. We were seen and treated quickly which was amazing. It was our best ER experience yet. They sent us home with the plan to use hydrocortisone cream mixed with bactraban cream to fight off a staph infection since with Evan’s history, staph was likely to develop. (Evan’s MRSA status has to be a post all by itself; stay tuned.) We followed up with our pediatrician the following week and she added a daily antihistamine since some spots on his body looked like hives and a consultation to the dermatologist mostly because she “just doesn’t trust Evan.” I don’t blame her. I don’t trust him either.

Saturday night in the ER.

Our sweet baby just can never catch a break it seems. We have since been able to keep his skin under control with a lot of steroid and antibiotic creams and lots of lotion. We use Tubby Todd; it’s amazing, and I highly recommend it to anyone with a kid who has sensitive skin.

I get scared about you getting older too, buddy.

We saw cardio for a follow up echo on Evan’s heart to see if the lasix he was prescribed was helping to shrink his pericardial effusion. It was! I could even tell just looking at the screen that the fluid pocket had shrunk. I don’t know if that’s a good or bad thing. Have I seen too many echocardiograms? Probably. Oh well.

Always at the doctor….couldn’t tell you which one this was, but Evan looked cute, so I had to post it.

We had some random nice weather this month which provided us with the opportunity to leave the house without a doctor to see. That is a very freeing feeling. It makes me long for warm weather and the end of cold/flu season so much. We took three walks in the stroller that week! I feel like I had forgotten what it’s like to be outside and moving. Oh, it was so nice. Evan liked it too! He really enjoys riding in the stroller which is so helpful for me since that’s how I get him in and out of all of his appointments.

I am in love with this onesie I made for Evan. Since I look at him the most, it’s really a reminder to me to trust in Jesus.
No pants party because it was HOT.
Cool ponytail, Ev.

Our follow up with pulmonology about his breathing landed us with a consult to the sleep clinic at UVA since Roanoke doesn’t have a pediatric sleep lab. Evan was still having significant oxygen desaturations each night even with his flow rate turned up. We (I) had gotten used to it at that point and I knew how to handle it. It’s not fun watching your kid struggle to breathe, but for us that’s life. It mostly just meant that I was going to wake up an extra 3-8 times every night to the lovely sound of his oxygen alarm. If you’re an O2 mama with a Nonin pulse ox, you know the sound. We went for the study in early February, but it takes three weeks for them to fully score the test since it measures so many things at once. The trip there was stressful. We took extra oxygen tanks, planned time for stopping to give Evan a break from the car bed, and mostly just freaked ourselves out. I mean, we moved so that we could avoid a 40 minute drive to the doctors, and now we had to drive two hours to see one. Hooray…not. Evan’s pulse oximeter wasn’t reading well the whole way there, so it just kept beeping to the point that I was more stressed out than Alex which is not the norm when it comes to Evan (thank you, medicine). But we made it in the freezing cold and survived the night. On the ride home (a Sunday morning, mind you) 81 was standstill traffic. We actually put the car in park at one point. And here lies one of my many fears about traveling with Evan: what do you do if you’re stuck in traffic and can’t go anywhere and the baby stops breathing, or the oxygen tank runs out, or the baby starts choking on his spit and needs to sit up, or there’s an emergency we can’t handle and we have to get to the nearest ER? We’re supposed to go to John’s Hopkins for a genetics specialist in June, and I am already nervous about the drive and overnight stay. But…that’s a long time from now, and things could be very different by then. And Jesus. I need to trust in Jesus more when it comes to Evan’s safety in these situations.

It’s fine. We’re fine. Everything’s fine.

Now back to Evan’s liquid poops. You may be laughing thinking “oh okay, the kid has some diarrhea, big deal.” And that’s what I thought the first two weeks of it too. We had attempted to ween into a formula with milk protein in late December, so we concluded that the diarrhea could simply be residual gut irritation from that. And when I say liquid poop, I am not using hyperbole. It was actually liquid. You can ask any of the nurses I sent pictures of it to. (If you don’t have nurse friends, you need to find some.) And then we were on week three. Then four. Then five. Clearly it wasn’t the two days of that formula. After more stool studies than I can count (if you need to commiserate over picking your child’s poop out of his diaper with your hands, I’m your girl), we still had no definitive answer. I was on the phone with Evan’s GI doctor every week about it, and he decided that since his labs kept coming back normal, we needed to get him on the schedule to do a full scope of his upper and lower GI tract with biopsies and bloodwork to try and find a cause. While we waited for our scope date, I just continued to live in a world where my nostrils burned with the stench of 1,000 poops on a daily basis. Did I forget to mention the smell? Yeah. It’s horrendous. You can smell it from across the room even if it’s just a tiny shart.

“You woke me up so they could put a camera where?!”

Evan’s scope date arrived, and once again I found myself finding excuses to snuggle him extra the day before and give him more kisses than any boy would ever want from his mama. I hate when Evan goes under anesthesia. And for a nine month old, he’s done it quite a lot! Luckily, this means that we get to basically have our own personal anesthesiologist. We are kind of obsessed with her. She has done every single one of Evan’s intubations, and we wouldn’t have it any other way. We got to the hospital bright and early (lol, jk, it was pitch black; it’s winter) to get him into pre-op. This time Evan got to wear a cute creamsicle colored gown that was, of course, enormous on him, but still adorable. He was very calm and snuggly as we waited for him to get taken back, and when they wheeled him off he was happy as can be. I think he thought the OR nurse was cute, and he was trying to flirt. When our anesthesilogist came in for us to do consent forms she asked us if we were prepared to stay overnight (it’s typically her call since his issues stem from the process of getting put under), and we said yes (with a sigh). As long as Evan behaved, we would get to go home that day.

Pre-OP snuggles are some of the best snuggles.

While we waited in the pediatric waiting room we talked with another couple. They had seen us roll in that morning and talked about how they were so sad to see a baby getting a surgical procedure. When their kid’s surgeon came to let them know he was finished and awake so they would get to go back soon, he also stopped to say hi to us. You know, because all the surgeons know us at this point. He said, “I saw Evan rolling down the hall, and I couldn’t believe how big he’s gotten!” Our sweet doctors. They don’t forget us. They see us. They know us. They love us. We found out later that he even went in to the OR to check on Evan’s intubation, since Evan is kind of a legend in the peds surgery world, and ended up placing his IV for the team. What a guy. We talked a bunch with the other couple after that. The woman said, “It’s sad that your kid is that tiny and the surgeons recognize you.” They were sweet. They asked questions about Evan and gave us a lot of encouragement about our parenting just from the 15 seconds that they saw us with him. I needed that last week. I needed someone to say “Hey. I see you. I see how hard it must be to be in your shoes. And you’re doing a good job.” So to that couple, thank you.

Tired parents enjoying a “coffee date” in a waiting room. He also got me an apple fritter. The man knows my heart.
I wasn’t kidding. This is how I change many of Evan’s diapers.

Once Evan was finished, they came to get us and let us know that all of his anatomy looked fine, so there were no issues there causing his chronic diarrhea. It would be about a week before we got all of his lab work back. He did still have some issues with intubation, but nothing new that would keep him in the hospital. We got to go home! And we are lucky enough to have his anesthesiologist for his next surgery in March. Evan took a little nap with his daddy, and then we got cleared to take him home. He would be cranky and uncomfortable for the next day or so, and we were told that we might see some blood in his stool or when we vented his G-tube, but that it was normal because of the biopsies. Flash forward to this week–his labs all came back normal showing nothing that could be causing his stools. We will meet with his GI team next week to discuss our next steps in figuring this out. So until then, I will wear my surgical mask coated in vapo rub with pride as I change a million poopy diapers a day.

To recap, we fight the eczema and cradle cap battle on a daily basis. We have had to forego the helmet completely for now because of how bad he reacts to it, but we just got remeasured today for a new one that *might* not give him a skin reaction. We live in the land of lava poop. And we’re really working on that whole not being terrible at breathing thing.

Some fun highlights of the past couple months are necessary for this post to be complete. And why not do a photo montage to do it?

Evan wore sunglasses and looked amazing.
Evan and his sad MRSA eyeball were feeling guilty one morning for keeping Mama up all night. How could anyone be mad at that face?
Evan went a whole night for the first time ever without dropping his oxygen enough to set off his alarms!
Evan learned that he loves snuggling in the big bed on Sunday mornings.
His mama likes it too.
He got to taste baby food for the first time ever during speech therapy, and he loved it!
He did not like his second food.
First Valentine’s Day!
He is sitting in a big boy high chair for the first time because his head control is slowly but surely improving!
He is starting to at least tolerate laying on my chest for short periods of time. This is something I desperately want to experience.
He wore this hat, and it was awesome. Also, we still have our Christmas tree up.
Evan got to live out his biggest life ambition: become Baby Shark.
Evan smiled A LOT. Oh, and he turned nine months old…I should probably find his sticker and take a picture.

Our guy is doing really well despite all of the challenges he faces. He smiles. He laughs. He loves getting wrapped in a towel after his bath. He is getting more motor skills and is probably going to hit some of those “three month” milestones in the next month or so.

I am sure to those who follow me on Facebook and Instagram, my posts about Evan tasting food or putting his hand near his mouth or whatever else it might be that day seems trivial and maybe even annoying. Like “cool we get it, your baby is doing baby things.” But for Evan to be “doing baby things” is incredible to us. I was practically yelling at people telling them about him tasting food last week because I was that proud. These milestones mean so much more when we have fought with literal blood, sweat, and tears to get here. None of the normal baby milestones have had or will come easy to Evan. He has to work harder than most for all of them, so we will shout it from the rooftops and we will celebrate every single one of them no matter how small. Every victory is a victory.

When my sister in law, Katherine, was going through cancer treatment, her favorite verse was Philippians 4:13 “I can do all things through Christ who strengthens me.” So it is on my mind a lot. I recently saw a post somewhere about how we so often take this verse out of context. We use it to encourage ourselves that we can literally DO all things. Almost as a mantra of “because I know Jesus, this thing I want will happen.” That couldn’t be more wrong. We are at the mercy of His will in all things. And when Paul said this in his letter to the Philippians, he wasn’t saying that things would go his way because he knew Christ. He was saying “I can endure all things through Christ who strengthens me.” When we seek Him first and trust Him, we will find strength to persevere, to keep fighting, to keep going when the world feels like it’s crumbling at our feet or when the road ahead is too bumpy and twisty to have any idea where it leads.

Advent With Evan

The holidays can be hard when your circumstances don’t feel like they match the “joy” of the season. We experience loss, sickness, heartbreak, betrayal, etc. because we are human and this world is not perfect. But in that deep need is where the heart of the advent season lies. Advent is waiting on the Savior to arrive, waiting for the light in the darkness, waiting for Hope to spring to life. So isn’t it fair to say that in these places of hurt and pain, we are actually experiencing advent in its truest nature?

Our first Christmas with our baby boy would look a little different than we imagined. It would be quiet– just the three of us. Travel to family for big gatherings wasn’t and still isn’t in the cards for us, and honestly, we are thankful for it. It’s going to take a long time before we are ready to handle large groups with Evan regardless of his medical restrictions. It is still hard to allow anyone to touch him who isn’t a medical professional. I feel like I hold my breath until he’s back in one of our arms. I don’t want to share him in that way still. And, if you’re a current or recent NICU mama or papa, you have every right to keep that baby to yourself. Circumstance has robbed so much of your time with your baby, and you are allowed to be selfish with him/her for as long as you need to. Don’t let anyone tell you or make you feel otherwise.

But, I digress. I have always loved Christmas. In college I even got a real tree for our house each year that we named Cynthia (we were weird, I know). I love the decorations, the music, the movies, the traditions, the lights, all of it. So I was determined to make the very most of Evan’s first Christmas. In November, I remember telling my mom that I wanted Evan to wear a Christmas outfit every day of December. I quickly decided that I would annoy every person on my Instagram and Facebook feeds with photos of my child in likely the same position (thank you, hypotonia) every day wearing a different Christmas outfit. I would title this series “Advent with Evan.”

I had a lot of fun looking at Christmas baby pictures on Pinterest to get ideas for Evan’s daily photos, but I quickly realized that most of them wouldn’t be possible with his lack of muscle strength. You see, Evan has hypotonia. This is a fancy word for low muscle tone. At this point, he was six and a half months old, but he could not lift his head, sit up, or use his hands in any coordinated movements. His gross motor skills were (and still are) closer to that of a one month old. This just meant we would have to get more creative with his pictures and give up on the dreams of sticking him inside an open wrapped box with a Santa hat on or whatever else Pinterest had to offer.

We started the day after Thanksgiving and continued all the way through Epiphany. Some outfits do repeat, but ya girl is on a budget. I do the best I can.

I had it in my head that I would post each of his advent pictures in order with cute captions, but it’s late, and this mama is tired. So instead we will all enjoy a lovely photo gallery of my handsome little elf.

Some light reading.
Sleepy after shots.
Even Santa gets this boy’s sass.
Singing loud for all to hear…
Santa came to see us.
Candy Cane Baby!
Jammies with Mama
Looking at his Christmas tree!
More “singing” at the doctor!
Ain’t that the truth.
Before we realized Evan was allergic to his helmet.
Sweet baby
Mama being mean adding weights to tummy time.
There’s an elf on my shelf!
Cutest snowman I ever saw.
“Okay, Mom. Stop taking pictures of me.”
All snuggled up!
Even his crib got festive!
“Seriously, Mom? A butt flap?”
Our favorite day! Officially OUT of the hospital for one day longer than we were IN!
Story time with Daddy.
Not into it at all this day.
Penguin on the loose in Roanoke!
Tree time is the best time.
Red on red on red.
Making sure the cookies are good enough for Santa.
“Mrs. Weasley made me a sweater, Mama! Happy Christmas to me!”
The best present under my tree.
As close to matching family pajamas as I’ll ever get.
Yes, baby. You are definitely sleighing it.
Adore Him, we will.
This one might be my favorite.
Ev, why you so cute?
“Mom, I don’t care if it’s your birthday. It’s all about me!”
“Just lounging in my new chair, Mom!”
“A tree AND presents?!”
Family Christmas picture
“Mom, I love this thing. Look at the lights!”
“Woah! Mommy and Daddy got me this cool chair. I’m a big boy now.”
“Gotta look fresh for my first Christmas.”
“But seriously, Mom. LOOK AT THE LIGHTS!”

Christmas with Evan was just amazing. We had the best time dressing him up, laying under the tree with him, watching Christmas movies, singing him Christmas carols, and reading him the nativity story from his storybook bible. I can’t wait to watch him grow and learn more about His Savior and why He came to be with us on Earth. I can’t wait to see how he will shape our family traditions. He will forever be the best Earthly gift God has given me.

Our Christmas season was definitely not all sunshine and rainbows as these adorable photos may lead you to believe. During the time I did my #adventwithevan series on social media, we spent seven days in the hospital over two separate admissions for two separate issues.

On my birthday, yup, my birthday, I took Evan into the ER per the instructions of the on call pulmonologist because Evan had been having significant oxygen desaturations in his sleep for several days in a row. (Also I am laughing right now because I just realized that we spent all three of our little family’s birthdays in the hospital in 2018. Granted, Evan’s doesn’t seem fair. He was brand new after all.) We were comfortable (I use that word very loosely) managing it on our own until we realized it wasn’t getting any better. It was a Tuesday, so I texted Alex to let him know where to meet us after work, and I headed to the hospital. Evan wasn’t critical by any means in the moment, so you better believe this mama stopped in the Starbucks drive thru on her way. If there’s one thing a parent needs when his/her kid is in the hospital, it’s coffee–LOTS of coffee. But, not wanting to look like a terrible mother, I chugged my pumpkin spice latte before we entered the building. At this point, going to the ER with Evan was kind of routine, so I wasn’t sad or scared or anxious…you know, all the normal things a mom should be in these moments. They got him admitted pretty fast and ran cardiac tests to see if the pericardial effusion he had could be causing his breathing issues. We got put in for a pulmonology consult as well.

As we were getting settled into our room, someone very special came to see Evan: SANTA! An organization called “Mason’s Toy Box” (I really hope I remembered that right!) came by with Santa to bring all the kids presents. They unloaded an armful of presents for Evan, and we even got to take our picture with the big man from the doorway (#isolationlife). What a sweet way to start our visit!

Bedtime stories with his little tree.

Evan got spoiled rotten that week. Every day at least one person or group came by with presents for him, and on our last day, they had me “shop” for him in “Santa’s Workshop.” I got to fill a pillowcase full with things for him. I kept thinking, “Wow. This is too much. We don’t deserve this.” What a picture of the gospel! While we were not planning on being there and we obviously weren’t happy that Evan was having more breathing issues, we seriously could not have asked for a better stay in the hospital. We got to make even more peds friends, spent time talking with some of our favorite people, and were just blessed beyond words by everyone there. Evan’s NICU primary brought me lunch one day, and she had a little Christmas tree with her so Evan could have a tree in his room. That was the only sad part of the hospital…Evan would be deprived of his greatest love: his Christmas tree (which is still up by the way). Then another of his sweet NICU nurses brought him more lights and ornaments to put on it.

My (big) and happy boy!

One of our blessings requires some backstory. Remember how we learned about that bigger car bed Evan could get when he grew out of the one from the NICU? Well, Evan had a growth spurt, and he got too tall for the NICU car bed real quick. We NEEDED to get the bigger one ASAP for him to be able to travel safely at all. I think I spent every day for three weeks on the phone with insurance people, the car bed company, and/or Evan’s doctors/therapists trying to get things moving. It got to the point that I told the woman from the insurance company that they had four options: they could either pay $2000 one time for his car bed, pay $600+ for an ambulance ride every time we had to go to a doctor’s appointment which was roughly 2-3 times a week, pay hundreds of thousands of dollars for us to move into the hospital, or pay $7000+ for Evan’s funeral. I told her that that was where they were leaving us. At one point, a representative told me that they needed evidence that the car bed was medically necessary and not for cosmetic reasons (the thing looks like a giant beige Yeti cooler…cosmetic? I don’t think so.) I told her I could send her a video of what happens when my child sits in a regular car seat: he will stop breathing, turn blue, die a little bit, and need to be resuscitated. Is that medically necessary in your eyes? Bless it! After weeks of this back and forth we finally were told that “car seats just aren’t covered in your plan.” So it was denied-denied. No turning back. Gee thanks. I could probably write a novel on my feelings towards insurance companies, but I think you probably get it. I remember calling Melinda, one of our amazing PTs, and telling her I had no idea what we would do. I figured that we would just need to bite the bullet and pay out of pocket or make a GoFundMe for it. She wasn’t having that. Within a week, she was able to get the company to loan us a car bed to use. It arrived while we were in the hospital that week. We don’t deserve the amazing blessings we keep getting. No matter what the circumstance, I believe that God is working for our good. Would I be singing His praises and giving the glory back to Him if we had an easy time getting this car bed? Probably not. The Lord has constantly been reminding me of my need for Him in all of our journey with Evan.

All hooked up for his study!

We did another pneumogram study for Evan and started him on a new medication to shrink his pericardial effusion (fluid around his heart). They also did a bronchial scope to make sure he didn’t have any anatomy issues that could be adding to his increased difficulties with breathing. His pneumogram showed that his apneas at night were mostly obstructive, meaning something was blocking his airway, rather than central which would mean his brain was forgetting to tell his lungs to breathe. This was good and bad news. The good news was we wouldn’t need to place Evan on medication for his breathing at this time and his brain didn’t seem to be regressing. The bad news was we couldn’t be sure what was causing the obstructions or why it seemed to be getting worse as he grew. Babies are difficult in this way. They are tiny and weird and just not finished. So many things can change, and they often don’t have explanations or clear cut timelines. This goes especially for a complex kid like Evan. And this can be so difficult for people outside of our tiny family to understand and accept. Is it fun to not have all the answers and a fix for everything? Absolutely not. But is it okay? Yes.

We got to go home a few days before Christmas, and I wrapped all the toys he got from the hospital and put them under the tree. We loved having our quiet little Christmas together. Alex’s family came the day after Christmas, and we got to celebrate with them for a couple of hours. Things kind of went back to normal with our routine, except I made Alex take off work one day that week for Evan to get two shots.

Don’t worry! We didn’t forget his tree when we packed his things.

I should mention that Evan had a good EEG early in the month that led us to the conclusion that he could probably ween off of his anticonvulsants. We were warned to be on the lookout for any seizure-like activity since it was still possible and told to either call the office or go to the ER if it happened. The goal is to not keep a baby on medications if they are unnecessary especially something like anticonvulsants. But Evan proved to us that he needed to go back on them. That Saturday after Christmas, Evan had three episodes of seizure-like activity. By the third time, we knew that he wasn’t just being tired or a little twitchy. We took a video and headed to the ER. That visit was not as fun. Evan had to be on a video-monitored EEG for almost two days to try and catch and record seizure, so of course, he didn’t have another episode. We also tried to see if we could correlate his nighttime apneas with anything going on in his brain since a seizure could cause obstruction. No luck there either. Evan wasn’t happy at all the entire time we were there because he had so many leads on his little noggin, but these are necessary “evils” in his life. Despite Evan’s crankiness and our lack of sleep this visit, we were blessed to have Evan’s favorite girlfriends and doctors taking care of him. I joke a lot that he keeps going back to the hospital just to see them, but some days, I really think it’s true! He loves his people!

Mom’s got jokes.

We got to leave on New Years Day. I’d say a homecoming was the perfect way to start 2019. I had fun continuing his advent pictures through Epiphany. Any excuse to show off your kid, right? Also, full disclosure, its mid-February, and he still wears Christmas outfits a good 50% of the time since that’s most of his wardrobe that fits him right now. My family got to come visit for Christmas that last weekend of our advent.

I will never forget the joy of our Christmas in 2018. It is not at all what we pictured a year ago; it is MORE. Our God loved us too much to keep our lives small and comfortable. It’s crazy that our greatest joys and deepest sorrows can’t exist without each other. Jesus is the perfect image of this. The Cross is the perfect image of this.

“The light shines in the darkness, and the darkness has not overcome it.”

John 1:5

Keepin’ it real. Happy Birthday, Jesus!

Hernias and Houses

We made it to Evan’s surgery date without any more illnesses. Hallelujah! We also found a house that would work for us in Roanoke only 15 minutes from the hospital and all of Evan’s doctors. Also Alex got a new job! October was a big month for the Nortons to say the least.

We were set to move the weekend after Evan’s hernia surgery. We had to wait to put our house on the market until we had moved out because showing a house doesn’t really work when your kid is on isolation. We decided it was in our best interest to rent a house for a year and then buy when we had more time to look.

Soaking up my precious boy.

I had been pretty calm about Evan’s surgery up until the night before. I didn’t want to put him down the whole night, but for practicality Alex and I took turns sleeping. It’s a surreal thing to hold your child on more occasions than you can count wondering if that will be the last time. Some of those times were rational fears, others not. But either way, it is terrifying and humbling. Parenthood is just that: terrifying and humbling. When you allow yourself to love this big, you are vulnerable to all kinds of pain and sorrow. It’s scary. And knowing that you can’t protect your child from everything in this world is the most humbling thing. We are not enough for our children. We were never meant to be enough for them. But we will hold them and love them and then maybe hold them a little tighter. So I held my Evan that night. I breathed him in. I stroked his little wispy hairs. I watched his chest rise and fall with each breath. I kissed his chubby cheeks.

“Mom, I think this gown is a little big.”

We left for the hospital shortly after 4AM the next morning. They got Evan all ready to go in the pre-op area and wheeled him back. He was so sweet and content. He had no idea what was happening. They took us to the parent waiting room and told us it would be a couple hours. We would meet Evan back up in the PICU afterwards so he could be monitored and get pain management for a few days. Evan’s surgeon came to meet with us in the waiting room when they finished. It went well, but she did need to call in another surgeon for assistance since Evan’s internal anatomy was so small relative to other babies his size. They told us the anesthesiologist would talk to us when we met him up in the PICU. Evan’s palliative care doctor walked up with us so she could hear from the surgical team as well and see if we needed anything. There are no words to explain how important she has been to us through all of Evan’s care.

This is the saddest picture I think I have ever taken. He gripped the bar of the crib for over an hour while screaming in pain.

Intubation and sedation was still a little wonky, but she told us that he was handling it better than he had in the past. Progress! They didn’t even have to keep him intubated this time. He was able to extubate in the OR and was breathing on his normal flow rate with his cannula. When we saw him, he was still pretty sedated, but he was starting to come around. His little cry was so pitiful. I remember being scared to change his diapers again since that’s exactly where his incisions were this time. We did our best to keep him comfortable, but as time went on that night he was clearly in more and more pain. I hated it. It was horrible. That night, he cried the whole night with only short breaks when meds would peak. We maxed him out on fentanyl, and he still was screaming through it. We ended up having to ween him back down from it because even though it was not touching his pain, it was hurting his respiratory drive. They ended up switching him to tramadol and IV Tylenol (it works better than oral for Evan) in alternating doses, and it seemed to be working. That’s the saddest thing about being a NICU baby with a complex medical history, but five months old, you have a tolerance to narcotics.

Sweet baby boy.
Why are you so cute?

Keeping Evan comfortable was our main goal over the next couple days. We were careful about his positioning, his feeds, the level of light and sound in the room, etc. We had some amazing nurses caring for him (and us) throughout that really made a huge difference. The PICU was new for us, so we were learning to trust new people with our sweet baby. They made it easy.

Evan turned five months old the day of his surgery, but we took his picture a few days late.

Our last night we were stable enough to move out to the regular pediatric floor (with two of our favorite nurses, Joey and Loganne), but since they were so full, we were in a shared room. Not ideal. The chances of us actually getting a roommate though were really low because it had to be a child under two who tested negative for RSV and the flu. Since at this time of year illness is the leading cause of babies and toddlers being admitted, we were pretty sure we wouldn’t get a roommate. Within two hours, we got a roommate. It was a wild child who screamed pretty much the entire time. Alex and I even discussed signing out AMA with Evan if things didn’t improve. This wasn’t a restful environment for him to heal. Alex booked a room in the hotel across the street so he would be able to get back to the hospital quickly if that’s what we needed to do.

We can learn from you, Evan. You always find joy where you are.

Things did get better, and I am glad we didn’t check out. We needed to talk to the physical therapist who is special needs car seat certified to figure out what to do when Evan got too big for the car bed he was using at the time. We were thinking we would have to find the car seat on the market that reclined the most and buy it. Little did we know, there was a car bed made for bigger babies! Melinda researched it right there with us at the bedside, did a quick assessment of Evan, and wrote the request for it from the company. The paperwork and all takes a while, so it was important that we got things moving quickly. Not only did we get our car seat problem solved that morning, but we got to talk with Melinda about Jesus and gosh, how we needed that. On our ride home that morning (our LAST 40 minute ride to or from the hospital!), Alex said how much of a “God thing” it was that we stayed that night and waited to see PT until that morning. He said we needed that conversation with Melinda. That’s the thing: God shows up, but we have to have our eyes open to see Him. We could have easily focused on the stress of that last night and how tired we were and how Alex had to spend the first half of his birthday (yup, it was his birthday) in the hospital with his baby. But on that ride home we were nothing but grateful (and maybe a little tired).

Hanging out on the couch with Dad one last time in his first (but more like second) home!

Evan recovered so quickly once we got home. Within four days, we didn’t need to give him Tylenol at all. Now it was time to move. We hadn’t actually packed anything at this point because baby and hospital and baby some more, oh and tired. We lined up Evan’s primary nurse from the NICU to meet us at the new house so she could stay with Evan for a couple hours while we went back to the old house to pack and load our cars. Moving was a multi-day, multi-person effort, but we finally got (almost) everything moved by the end if the next week. Alex was also on a two week break between jobs, so we got to have him home while we settled into the new house.

Moving day nap
Home sweet home!

Living so close to Evan’s doctors was such a game changer for me. I didn’t need to have someone with me for his appointments anymore. I could confidently drive him to and from with very little stress. It was, I am sure, very comical for onlookers to witness me lugging Evan and all his accessories (including a giant EMS backpack that has become his diaper bag) in and out of places, but we were doing it!

Evan also got to celebrate his first Halloween that month! He, of course, was Harry Potter also known as “the boy who lived.” Quite fitting if you ask me.

Yes, those are baby UGG boots.

Life seemed to be settling down for us which was so nice after such a crazy month. Surgery, new house, new job. It was a lot. Alex loves the new job, by the way! It was such a blessing for us even if it came during such a busy season of life.

In November, we stayed home the entire month! We had such a great month. Our biggest issues were eczema, cradle cap, and a baby who didn’t sleep at night. NORMAL BABY THINGS. You have no idea how awesome it is to be worried about or struggle through normal baby stuff with Evan. It’s kind of amazing actually. Blow out diapers, peeing during his bath, fussing for snuggles, the dreaded witching hour…they are really all just blessings. They are signs that our atypical baby is doing alright. They are reminders that there is hope for him and his future. Thank you, Jesus, for that.

I love you.

Tomorrow will be my favorite post so far. For those of you who have followed me on Instagram or Facebook, you know what’s coming: Advent with Evan! Get ready for lots of pictures!

Our Life in the NICU: Part Three

July was the best month we spent in the NICU. We added more nurses to our list of primaries, and even when our primaries weren’t working, we had more consistency with who would treat Evan. This made things so much better. We had become friends with so many people on the NICU staff that coming in every day felt even more normal than it had before.

“Holding” his paci!

Alex went back to work at the end of June, so I would sit with Evan by myself until he left work. I was nervous the first few days that I was by myself, and some days I just didn’t leave to eat lunch or take care of myself because for whatever reason being there by myself made it harder to leave him. Mom guilt is the worst. It got to the point that sometimes our nurses who knew me well would kick me out to go eat, and somehow they convinced me to get a pedicure one day. These people were our family. They knew what we needed and made sure we would get it. Despite my random days of not taking care of myself, we really had settled into a routine. We chose to find as much joy in our situation as possible.

Baby model.

July was basically a month of waiting for Evan to grow and gain strength enough to undergo surgery again. We played with some of his medications here and there to make him more comfortable, and he weened completely off of respiratory support. That was the best day.

He might be crying, but this is still the cutest picture.
The tiniest, sweetest babe.

We had a lot of fun with the Fourth of July. I decorated Evan’s carespace, and we were lucky enough to be in the best spot for watching fireworks! Maegan even worked a later shift that night, so she watched with us. It was so much fun. Then Evan surprised us on our anniversary later that week with his very first PO feed! We got the go ahead from his docs to attempt PO feeding up to 4mLs. With a lot of help and some patience, Evan took 2mLs by mouth that day! He didn’t do it again until August, but hey, a win is a win.

Excuse the fact that he looks like he got in a fight with another baby.
He will hate me for all the matching outfits when he’s older.
Fireworks!
Sam, our speech therapist, is a miracle worker!

We were so excited to see him finally growing even if it was because we had to completely bypass his stomach in order to feed him. He seemed so much happier as well. Despite the new feeding system and two reflux medications he was on, we still had issues with vomiting. He would throw up his natural secretions which he has a lot of. We added a medication to attempt to decrease these secretions so he wouldn’t continue to vomit and choke on them. It definitely helped, but he was still throwing up some. This led our team to decide that Evan needed drastic measures taken to ensure any future ability to feed into his stomach. He would have a nissen fundoplication surgery when his G tube was placed. This surgery would wrap the top of his stomach around the bottom of his esophagus making it physically impossible for him to vomit or burp. Normally, they do not do this surgery on babies, but Evan definitely needed it, and it has been the best thing for him.

Two months!

Evan still needed to wait a little longer to be big enough to handle the surgery, and the plan was to attempt feeding into the G tube with the hope that the nissen would solve our problems letting him tolerate these feeds. However, we knew that there was a good possibility he would need a G-J tube which would mean at least an additional six weeks in the NICU. We accepted that would probably be our fate as Evan had proved to be quite the troublemaker up to this point. A G-J tube would do what his NJ tube was doing but through the port in his stomach. Unfortunately, they didn’t make equipment for it small enough for a baby Evan’s size, so that could have added even more wait time.

Post bath snuggles!

Meanwhile, everyone we knew on social media kept saying how Evan looked “so big” and “would be home in no time.” I hated that, but looking back, it was mostly my fault. I didn’t keep people updated on the details of his medical care at the time because we were so focused on staying positive and looking for all the joy we could find. But I do think there is something to be said for watching what you say to a NICU parent. Size is not the only thing that a preemie has to worry about. There are so many medical reasons a child would need to stay in the NICU. There are term babies weighing seven pounds or more who have to spend time there for tons of reasons. Later on I will be posting about how to care for a NICU family, so I will stop here for now.

Holding him every day was the best part of the day. It was so short sometimes and some days not even possible. We’re still catching up.
Evan loves The Office. It’s his favorite show.

We finally made it to the week of Evan’s second surgery attempt. They planned to intubate him up in the NICU ahead of time to have as many people present and as controlled of an environment as possible. Alex called me on his way from work that night which wasn’t normal for him. He had been in a car accident and was being taken to the ER downstairs as a trauma alert. Cool. Just what we all needed. I told Amber, one of our day primaries (thank God she was there that day), that I had to go downstairs to meet Alex and see what was going on. His truck was completely totaled, but luckily he was fine– just some bruises and muscle soreness. I think I had been holding my breath until I saw him. Still, this was not how either of us envisioned the night before the scariest day of our lives going. The team in the ER was incredible though. They knew our situation so they got Alex discharged as quickly as possible so he could come up and see Evan before we had to go home to sleep.

Surgery day!

I think I called to check on him at least three times that night. It was to the point that I remember Addie (one of our night primaries) told me to just go to sleep. I love her. The next morning Amber texted me once he was intubated so we wouldn’t come and have to get kicked out for it. That would be more stressful. He did great. That was the scariest part of this surgery given all that happened with his first intubation in June. God bless that NICU team and our anesthesiologist (she’s the only person we will allow to put Evan under). The time came for them to take him down. Alex and I prayed over him, and they wheeled him away. I had never felt so scared in my life. I immediately started crying and Amber gave me a hug which made me feel at peace so quickly somehow. I told you–they are our family. We now had about three hours to wait for him to finish. I forced myself to fall asleep so it would go quicker. They brought him back up and told us that it went great. Now we would just need to monitor him, keep him comfortable, and wait for a safe time to extubate him.

Sweet, brave boy.

We were able to extubate overnight that night, but he was struggling so much with pain management. He ended up needing two different narcotics to stay even remotely calm. I felt so bad for him. Post-op is definitely worse than waiting while he is in the OR for me at least. I hate seeing him in so much pain knowing I can’t do anything to help it and that he doesn’t understand why it’s happening. He had four incision sites plus the G-tube port that were all tender. I was afraid to touch him because I knew I would make it worse. After a few days, we were able to decrease his pain meds significantly. But then he started having bradycardia spells with his oxygen desaturations. Super fun. These thankfully stopped at five days post-op.

The first time we ever got to see his face without anything on it! He is so handsome.

We started attempting to ween him onto feeds into his G-tube. Within a week, he was at full feeds and was tolerating them! It felt like a miracle. We would not need the G-J tube! He was doing so well. He wasn’t throwing up and choking all the time. He seemed truly happy for the first time in his whole life. It was like we had a whole new baby.

First crib ever!

We were quickly learning how to care for Evan’s G-tube and getting ready for managing it at home. All of a sudden people started throwing out worlds like “discharge” and “home” to us. It had felt so far away, and now it was actually getting close. I honestly didn’t believe Amber when she first told me we might go home soon. Then I panicked over all the stuff we needed to do to be ready.

Tomorrow, I will tell you all about the emotional roller-coaster that discharge was for us. If you’re one of Evan’s NICU peeps, you are probably laughing right now remembering it.

Our Life in the NICU: Part Two

We were blessed. Blessed to know ahead of time that we would be spending time in the NICU. I always told people that, and I believe it. Knowing something hard is coming gives you time to prepare for it. By June, we had truly accepted that NICU life was our normal. This was how we would experience the newborn stage. This is where we would navigate the uncharted waters of parenthood.

Sweet boy with his daddy.

Alex was lucky enough to be able to take six weeks of FMLA when Evan was born, so for six weeks, we spent every moment together. We had never done that in our whole married life. I don’t actually know any married couple, aside from those retired perhaps, who can say that. It was a dream. I fell more in love with my husband in the months we spent in the NICU than I knew possible. We were a team in all things. Alex showed me Christ’s love in ways I had never really experienced from another person before. He sacrificed for me and for Evan daily. He always put our needs above his. He was the quiet strength I needed on my darkest days. Our marriage was strengthened by crisis. This is one of the many gifts the NICU gave us.

My whole heart outside of my chest.

As I said in my last post, June threw us curveballs. Evan was throwing up roughly 30-40 times a day, and honestly, that may be a conservative number. Through all the extensive testing his doctors did to establish a cause, all we could find was acid reflux. “The worst case of reflux” one of his doctors “had ever seen in any NICU patient.” This doctor has been practicing for decades. I told you. Evan is special. He has to do everything in a dramatic, over-the-top manner. We got to the point where we just didn’t put clothes on him anymore because changing his outfit at every single caretime just to change it again five seconds later was irritating him so much that he would throw up even more. To this day, I cannot hear another parent say their child throws up “a lot” or has “really bad reflux” without rudely thinking “you have no idea what acid reflux is.” (I know that each child is different and everyone’s experience is their own. But comparison, that nasty thief of joy, comes at me and leads my mind to these sinful and inconsiderate thoughts. I am human, and I am sorry.) Evan did not gain any weight at all in the first two weeks of June. Our team decided we would place a G-tube, a more permanent way to tube feed that goes directly into his stomach, in hopes that this could relieve some of his reflux since he wouldn’t have a tube going down his esophagus. He was put on the surgery schedule for June 13, a day when, thank God, Maegan would be with us.

In the midst of all of this vomiting, I should mention that we were also working with speech therapy to teach Evan how to suck-swallow-breathe, a combination necessary for eventual PO (by mouth) feeding. He did not have much of a swallow reflex when he was born, so if he had food, vomit, or even spit in his mouth/throat, he would choke, hence all of his desaturations. When Sam, our wonderful speech therapist who we still work with today, would come to work with him he often said “no, thank you” by dropping his sats and turning blue. How rude of him. Thankfully, Sam didn’t take too much offense and stuck with us even though Evan was pretty mean to her during our time in the NICU.

“No pictures, Mom. I don’t feel well.”

Even though Evan was throwing up constantly, dropping his sats often, and turning blue so frequently it seemed like it was for kicks and giggles, we started to get comfortable. Good NICU nurses are ones who teach you how to be calm in chaos, because life with a preemie will be chaos at least for a while even if you go home. We had great ones. Maegan knocked in the cardinal rule of the NICU: If we don’t freak out, you don’t freak out. It took some time for it to sink in, but it did. Martha taught us a second one: It’s okay that it’s not okay. I don’t even know if she knows she did this for us. But it was one of the most impactful lessons I learned.

We now knew what beeps mattered and which ones we could ignore. We knew when to ask for help. We knew Evan well enough to know something was wrong even before the monitors told us. We knew to breathe and stand aside when nurses needed to rush to his aid. We knew that when his blood oxygen was reading 9% and his HR was 31, his God would save him through the hands of his guardian angels. We knew that this would be temporary. We knew that our God is a faithful God who redeems all things.

Waiting for the surgeons to come get him.

June 13, surgery day, finally arrived. Evan wasn’t allowed to get any food until his surgery so he was just getting IV fluids. That was the happiest and calmest day he had had his entire life. No food. No vomit. We were worried he would scream in hunger all day, but he was so sweet and content. Our hearts were equally broken and joyful. Our sweet boy was made happy in hunger. But maybe this is a lesson…our time with a sick child has been a time of intense hunger and need for Jesus, and because of that it has been one of the most joyful. Wow, I am still learning.

We said a prayer as they wheeled Evan away and decided to go for a walk outside to keep our heads clear. We barely made it 20 yards from the hospital doors before we got a call from the surgeon. “There’s been a complication…” I honestly cannot remember everything he said to me on the phone because we were sprinting back towards the hospital. I remember “CPR,” “epinephrine,” “we got him back,” and “we will meet you in B pod.” Our boy was NOT okay. This was NOT the way this was supposed to go. We rushed back into the NICU, and a group of nurses and CNAs were getting all of our things from D pod to move to his new carespace in B pod. You don’t bump back up in the alphabet. That’s not how the NICU timeline is supposed to go.

We stood and watched as they rushed Evan in. He looked lifeless to me. He was pale. He was limp from medications. He had a breathing tube keeping him alive. I remember his temperature was way too low, so they had a heating pack underneath him. I think there were at least six people in his carespace frantically working on him. “They are freaking out,” I thought. “What am I supposed to do?” They drew blood and called out numbers. They ordered blood for a transfusion.

So swollen.

All of this was happening while the surgeon explained what happened to us again in person. You know those risks they tell you about before any surgical procedure no matter how small? How there are things that happen in less than 1% of people, but they still need to mention it? Well, Evan is that less than 1%. His airway spasmed when they tried placing the breathing tube when putting him under. It completely closed. No air could get in. They had to give him epinephrine and do chest compressions to keep him alive and get his airway open again. Once they could place the breathing tube and get his vitals up, they couldn’t risk proceeding with surgery or extubate with him being so unstable. I don’t know if I was stepping up and being the “strong one” or if I was just in too much shock to react, but I just stood there and said “okay” while Alex reacted the way I think I was supposed to. Once things settled, the respiratory therapist pulled a chair up beside Evan’s bed and told me to go hold his hand. He didn’t look like himself. He looked like he had lived a thousand lives since I last saw him just an hour before. Where was my sweet tiny baby? Why did this happen? Where do we go from here?

We stayed late that night. It felt even more wrong than usual to leave him behind as we went home to get some “rest” (you never truly rest when your baby is in the NICU). Maegan had picked a nurse for him that night since he was supposed to be post-op. Her name was Brittany; she would later become our night primary and a dear friend. When we got home, I came undone. Alex held me and kept reassuring me that Evan was okay now. I didn’t believe him.

The next few days were hard. Evan stayed intubated for 36 hours and was so irritable when he got extubated. They had to place a new PICC line for TPN since he was going back to the beginning with his feeds. This was a major setback for him. Not only was he too unstable to reattempt surgery for at least a month, but he also was back where he started in May with his feeding. His doctors came up with an alternate plan. His NG tube needed to go past his stomach into his intestines. This could stop him from throwing up as his food would never be in his stomach. They fed the tube further in and checked it with an X-ray. It was in the duodenum, the first part of the small intestine; he could safely get feeds now. As they weened him down from TPN and up on his continuous ND feeds, something crazy happened. He started to grow. Not only did he start to gain weight, but he also got hair!

ONE MONTH.
Hey, brown eyes.

Things started to turn around. Evan turned one month old, and as a special surprise, on his 33rd day of life, he opened his eyes for the first time! Only for Maegan, of course, that little flirt. But she snapped a picture for us because she knew I would kill her if she didn’t. He didn’t really do it again for a while, so this sweet picture meant the world to us. Just when we didn’t think he could get any cuter!

Now he was growing to be strong enough for another attempt at surgery and beginning to ween his respiratory support.

“You’re allowed to be here now!”

“My ears had heard of you, but now my eyes have seen you.” (Job 42:5) This is one of my favorite verses in the Bible. Job says this after years of tragedy and hardship. He knew God before and even trusted Him, but it wasn’t until he had been in the depths of the valley that he felt he had truly experienced God. True intimacy with Christ can often only be gained after being in the pit, a place where our need is greatest. I have seen the pit several times in my life, and every time I come out more in love with my God despite the outcome of my circumstances. I thought of Shadrach, Meshach, and Abednego going into the furnace when I considered Evan’s life before he was born and there was so much we didn’t know. I thought about them when I watched my son fight his way back from the brink of death on multiple occasions. I think of them now when so much of his future is uncertain. “And if not, He is still good.” A mother’s love is a force to be reckoned with, but God’s love? There’s no comparison. I am not the one who loves Evan most. I never will be. His Heavenly Father loves him with a reckless, never-ending love that I cannot even fathom. So even in the valley, I will trust and praise Him.

Our Life in the NICU: Part One

When I thought about how I would put our 87 days in the NICU into words, I was overwhelmed and stuck. How could I concisely do it justice? How would I convey the emotional and physical exhaustion we felt? How would I adequately explain the medical jargon we have come so accustomed to in a way that would be easy to understand? What if I left out something important and didn’t realize it until days later? What if, in my honesty about our time there, I hurt or alienated our family and friends? These questions are among the many reasons I have put off writing not only this post but this entire blog. I cannot be 100% authentic about our time in a concise manner, sparing no details, in a way that is easy to understand, without ruffling some feathers. It’s just not possible. And that is why these next few posts terrify me to my core. But I am called to be courageous which Brene Brown as taught me means to share your whole story with your whole heart. So here we go…

I needed to divide our time in the NICU into a few parts, mostly for organization’s sake. Today, I want to share about our experience in the month of May. In my last post, if you read it, I took you though May 18, the night I got discharged and had to face the first of dozens of nights that I would leave a piece of myself behind in a roughly 10×10 carespace to be cared for by strangers. Luckily, those strangers became our second family, and I will be forever grateful for them (more on this next week).

Let me start with this: I do not know how women have C-sections and go home with their babies and manage to take care of them and survive. If this is you, you are a warrior princess, and you deserve a medal. C-sections are MAJOR surgery. A 7-8 inch incision is made across your abdomen cutting through muscle and your uterus is LITERALLY ripped open. I could hardly do anything for myself in those first couple weeks. It hurt to do everything. I couldn’t sit up from bed without help. I couldn’t walk without help (and often a wheelchair stolen from the hospital lobby). I couldn’t even get in and out of the shower by myself. Sitting put pressure on my incision…you know, that giant hole they cut to pull a full(ish) grown baby out of. Everything exhausted me physically. Add not sleeping because of anxiety over my child being in the ICU, pumping every three hours to maybe eventually feed my baby, and those lovely night sweats from postpartum hormones and you get a very tired mama.

In our NICU, each carespace has one recliner for a parent to sit with his/her child. If both parents are there (which honestly did not seem to be the norm), you could roll over a computer chair from the nurses’ station. Sweet and wonderful Alex sat in those horribly uncomfortable swivel chairs every day, so that I could at least be somewhat comfortable in the recliner, but even then, sitting was more or less torture. Pretty much the only “comfortable” position in the first couple of weeks after a C-section is lying completely still while mostly flat, but not all the way flat because then your stitches might get tension and that hurts too. So bless it. But we sat. All day. Just to be near our boy and participate for caretime every three hours. Caretime was the only time we could touch Evan. We would change his diaper, take his temperature, and his nurse would reposition him. This may sound crazy to you if you have never experienced the NICU, but it is critical for these babies. A premature baby is not ready for all the stimulation of the outside world, so while a typical newborn can handle and even enjoy being held, played with, and passed around, a preemie cannot. Sleeping babies grow, so Evan needed as little stimulation as possible so he could rest comfortably in order to get big and strong.

That first Saturday, I had a friend drive me to the hospital a couple hours behind Alex because I knew I wouldn’t be able to last the whole day before I was in too much pain to sit there any longer. He texted me when he got there, “Our nurse today is wonderful. You are going to love her.” The next day, that nurse, Maegan, became our primary. Today, she is one of our closest friends.

Evan was waiting on getting an MRI which is difficult to coordinate since the neonatal transport team has to take him down for it and bring him back up AND the MRI had to be available at the same time as they were. In the meantime, physical therapy made their assessment and gave us tips on how to be careful with his sensitive hip joints, weak range of motion in his arms and legs, and easily molded head. Evan’s breathing seemed to be improving, and they even took him off of respiratory support for about a day. He was still getting most of his nutrition though his PICC line which is basically a fancy long term IV. His was a dual lumen one since his seizure medication couldn’t be pushed at the same time as other stuff he was getting. The IV nutrition (TPN) looks like yellow gatorade in its bag, so I liked to pretend Ev was just refueling after working out.

Our first family photo!

We finally got his MRI done and it confirmed that a portion of his brain, the corpus callosum, was only partially formed. It also showed that the gray matter of his brain was underdeveloped even for his gestational age. In addition, he had too much fluid in his ventricles and his optic nerve was small. They looked at his spine too and saw potential issues there that would need to be revisited on a repeat MRI once he was significantly bigger (he is still not big enough). We expected most of these findings based on his prenatal testing. One thing we didn’t anticipate was the fact that Evan did not open his eyes. For a while, we weren’t even sure if he could. We also did not anticipate the gastrointestinal issues he would soon present.

Tiny little prince.
First time wearing clothes! Regulating his own body temp like a champ!

Evan started to receive fortified breastmilk through his NG tube (a tube that runs through his nose into his stomach) in small amounts as they weened him onto feeds instead of the TPN. This is when our biggest hurdle we would face in the NICU began. As Evan weened up to full feeds, he began to spit up. You’re probably laughing at that. “Okay, Brooke. All babies spit up.” Yes, they do, but Evan likes to do things in his own dramatic way. By May 24, Evan was throwing up a lot. That day, we thought it could have been so much due to the stress of moving into a new pod in the NICU (there are five rooms of 12 carespaces each called pods. A-C are for more critical care babies, and D and E are for more “grower and feeder” type babies) and having to get endocrine labs drawn that day (a heel stick every half hour for an hour and a half). That was the only day we had to leave because I couldn’t emotionally handle being there. I couldn’t stop myself from crying, and as we left I just kept telling Alex, “I don’t want to be here.” It is a horrible feeling knowing that you are completely incapable of taking care of your own child–medical needs aside, I couldn’t feed him at all or even hold him without help from a nurse.

Sleepy boy.

The next day, we expected things to improve with his vomiting since he was getting settled and wouldn’t need labs drawn. We were wrong. He seemed to be throwing up even more. Over the next few days his vomiting increased despite the efforts we took to improve it. He was getting probiotics. We slowed his feeds down to a continuous rate, so his belly could never get overfull. We tested his stool and confirmed a dairy allergy, so he switched to a hypoallergenic formula instead of breastmilk. Nothing helped. Evan had gained a half a pound over these two weeks, but that is where he would remain until we could figure out how to get him nutrition since he was throwing up just about everything he ate.

I loved when nurses would make hearts with the tape for his cannula.

These next few weeks would be the most stressful and emotionally taxing we experienced in the NICU. Evan couldn’t stop throwing up, and he had to increase his respiratory support because he would choke on his vomit and stop breathing. Maegan would always tell us, “You guys don’t freak out if we don’t freak out.” But there were so many times in that first few weeks that the nurses did have to freak out a little and hustle to Evan when his vitals would drop. His airway needed suctioning, and he would require the oxygen mask to get his sats up quickly.

It was hard to leave him each night knowing he was miserable from throwing up so much. He would cry his sad, tiny cry, and I couldn’t fix it. I would call his night nurse every night to see how he was doing, and I hated night after night hearing how much he was throwing up or that they had to give him blow by oxygen when his vitals would tank multiple times. He quickly earned his way back to intensive status since he needed to get bumped to a high flow nasal cannula after his worst night of desaturations so far.

Thank God this isn’t the end to Evan’s story. Thank God we did not have to walk this alone. June would throw its own curveballs at us, but our faith would be strengthened, and we would lean into His grace and His peace more than ever.