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!

Great Fear, Greater God

Four Days. That’s how long we made it this time. Four measly days. I couldn’t manage to make it through one work week without having to take Evan to the ER. Where’s my Mom-of-the-Year trophy?

Starting our day as any other…
(Also, yikes, I look as tired as I probably felt.)

This time we went to the ER closest to our house and waited on the pediatric transport team to come get him and take him to Roanoke. I looked at Alex, “We need to move. We need to move now.” Evan wasn’t breathing well again, and his Owlet sock had alarmed a bunch of times that day. I knew the drill this time. I packed everything we would need, and we headed out. Alex followed the ambulance to Roanoke and met us up in Evan’s room.

First ambulance ride…oh, the milestones we keep.

He had a little crib waiting in there for him. I could have cried. There are two kinds of cribs up in PEDS. The little ones like they have in the NICU and these big clunky things for more like toddlers. They saw Evan’s name as the incoming patient and remembered that we preferred the little crib. (We love you, Andie.) When you are spending most of your days with your kid in the hospital, these simple gestures mean everything.

Handsome boy.

This time was much better. We knew how the PEDS floor worked; we had met nurses we loved; we knew the residents and attendings. And even better…they knew us. The nurses knew that Evan kept to a strict feeding and medication schedule. They knew that he needed as little stimulation as possible. And they did everything in their power to adhere to these needs. They were incredible.

Paci time with Daddy

Evan’s chest X-ray didn’t look good, but he didn’t have a fever, so it was hard to definitively diagnose pneumonia, but since his oxygen requirements were high, they went ahead and treated for pneumonia. We also got a pulmonology consult this time since it didn’t seem like Evan was going to be able to ween off the oxygen. We discussed home oxygen and monitoring, and the pulmonologist and pediatric attending (who became our regular pediatrician after this admission) agreed that it was necessary to keep Evan safe and out of the hospital. In the meantime, we did something called a pneumogram study that tracks the details of Evan’s breathing over a period of 12-18 hours. It required some charting from me which was actually kind of fun because there is a running joke between me and many nurses that I will do all the work but they have to chart.

Little mohawk man on the couch with Mama

Six days after admission, we got everything set up for our home health equipment, and we were ready to go home (again). With Evan’s pulmonary status clearly very sensitive, it was even more important that we keep him in isolation leading up to his hernia surgery that was scheduled for mid-October. If he had any more setbacks, we might have to push the surgery to make sure he was stable enough given his past issues with intubation and anesthesia. We learned how to check Evan’s hernias and reduce them to make sure they didn’t incarcerate.

Right after we were discharged, Evan celebrated being four months old and finally worked his way into 0-3 month sized clothes!

This is what made the potential of pushing surgery so dangerous. If his hernias incarcerated, he would have to have emergency surgery which would completely negate all of the control factors we were putting in place with his surgical team. We had the same surgeon who did his nissen picked out and his “personal” anesthesiologist to make sure intubation went smoothly. He would be the first case of the day, and he would have a room in the PICU waiting for him after recovery so he could be monitored closely. Evan could NOT get sick before surgery.

So our house would live up to the nickname we had for it, Fort Nort. No one in unless medically necessary. When we would go to appointments, no one was allowed anywhere near him unless it was medically necessary. We would cower in the corners of waiting rooms giving people “the look,” the one that says, “Yes, there IS in fact a very cute baby in this car seat, but NO you may not even think about looking at him with your germs unless you want me to cut you.” The “we” here is really just me, but I will lump Alex in to make myself feel like less of a crazy mama-monster. We were already doing all of these things, but now it was so much more important especially with cold/flu season starting.

Crabby baby.
Practice makes perfect!
Our little Hokie “studying.”

We were serious about moving closer to the children’s hospital but hadn’t found anything promising yet. Up until late(ish) September, I hadn’t driven to one of Evan’s appointments without someone else driving my car while I sat in the back if Alex couldn’t take off to come with me. (Alex worked 30 minutes from our house in Roanoke, so to come get us for an appointment, all of which were in Roanoke as well, he would spend two hours just in the car outside of the time it would take to actually have the appointments. Not possible for just taking part of the day off.) There came a day when no one was available to ride with me, so I figured it was time to rip the metaphorical bandaid. Alex would meet me at the doctor’s office.

Little boy, you are so loved.

It was raining. Great start. I ran Evan’s diaper bag and suction machine out to the car. I came back in and got him hooked up to the portable oxygen tank like we always did and put him in his carseat. We went to the car and got hooked in. I waited a minute for his monitor to pick up because I was sure it couldn’t be reading properly: 77%. It wasn’t coming up. I climbed into the backseat to make sure it was on his foot properly and check his color. He was gray. This was real. I quickly suctioned his nose and mouth to clear any secretions that could be causing his airway trouble. No change. I turned up his flow rate to 1 liter per minute when he was normally on a half. No change. I took him out of the carseat and stimulated him because he was limp. He wasn’t getting enough oxygen. I looked at the monitor: 64%. I thought to myself, “This will not be how my son dies. He will not die today. And what’s more, he will not die because I panicked and didn’t handle the situation.” I called our friend, Eric, who is a paramedic and had him talk to me while I worked on getting Evan breathing well again. After what felt like years, I got his sats back into the 90s, but it required him being on 1.5 liters. That was the scariest 35 minutes of my life riding to the doctor’s office. Yup, we still went. I think I pulled over at least once more on the way to give him some stimulation and suction him. I truly believe we were kept safe on that car ride by the hand of God alone. When we finally got there, I pulled him out of that carseat so quickly. That’s what was doing this to him. WE HAD TO MOVE. We could not travel 35-40 minutes 2-3 times a week for appointments or the pediatric ER. It just wasn’t safe.

I told our doctor about what happened on our way there. We suctioned him before leaving and the plan was to have him sit in the carseat for a few minutes before leaving the office to make sure he would be okay. Alex would drive my car back, and I would sit with Evan. We would figure out getting his truck later. Within five minutes, Evan was turning blue again, and his sats were in the 60s. We pulled him out of the carseat and our doctor came back in with two nurses to get his vitals up and his color back. We all gave Evan a stern talking to and explained that this is not the way to try to see his new girlfriends in PEDS. They got him stable, and we headed home mildly terrified but so happy to not have to go back in the hospital. We were seeing the pulmonologist early next week, so we would get a better plan for breathing in the car.

Car bed!

We asked for a car bed for Evan as soon as the doctor walked in. He didn’t even hesitate. They don’t have them in the office, so he sent one of his staff down the street to the hospital to get one from the NICU. Usually that is where families get them. If your child can’t pass the carseat test, you go home in a car bed and retry for a carseat later on at the pulmonologist’s office. Evan, as always, just wanted to do things his own way. So we took an even bigger step backwards with his breathing. But, guess what? It was okay! We got what Evan needed to breathe and travel safely in the car. No more standing in the rain trying to resuscitate my baby all alone. Praise God!

We also made a plan to stay on oxygen support through cold and flu season and reassess Evan’s needs and/or try to ween him off after. There would be no sense in taking him off oxygen during the months when he is most vulnerable to respiratory illness. That would actually be dangerous.

Now that we had everything Evan needed to stay safe and healthy (feeding tube, nasal cannula, pulse oximeter, and car bed) we just had to wait for his impending surgery date. It was a month full of cuddles, reading books, singing songs, learning to SMILE, and loving life with our guy. He still was a terrible sleeper at night, but he made up for it in cuteness.

During this time, Ellie Holcomb released a children’s worship album called Sing: Creation Songs and a children’s book called Who Sang the First Song? We have loved listening to the album and singing along to the sweet truth it proclaims about our God and who we are because of Him. One of my favorite lines in the song, “Sing,” is “God’s song says you’re good and you’re wonderfully made, and I’ll never stop loving you all of my days.” Evan is good because he is His. Evan is wonderfully made in His image. God doesn’t make mistakes. He doesn’t give up on us. He doesn’t stop chasing after us. Ever. God loves my son and fights with us for his health and well-being. He knows that our physical life is temporary, and he is more concerned with our spiritual life: that which is eternal. He is molding and shaping us into parents who can speak boldly to our son about the truth and grace of the gospel REGARDLESS of circumstances. If our faith was only there and we only shouted his goodness when things were easy, we would not have faith at all. It is when times are hard, in trials, in sorrow that we see the fullness and goodness of our God– if we choose to look! It is all about choice. So I will choose praise Him for who He is and for how he shows me His love every day through this precious gift that is Evan.

Being a Not So Stay-At-Home Mom

This was it. My life dream was about to be fulfilled. Me. Brooke Norton. A stay at home mom. As scared as I was to be completely on my own with Evan for the first time, I was excited to enter into this new season of life. Me and my guy, all day, every day. We would read books, sing songs, cuddle, nap (maybe even at the same time), and let’s be honest–watch a lot of Netflix.

Day One: Evan did not sleep at all without needing to be held that first night before Alex went back to work. I assured him we would be fine all night so he could get a good, solid night’s rest. I hadn’t slept more than an hour and a half when he left for work that day, but I was still thriving. I cleaned, kept up with dishes, did laundry, stuck to Evan’s strict feeding and medication schedule, did his G tube dressing changes, and kept him happy all day. When Alex got home that night I think we were dancing to “Brown Eyed Girl” in the living room. It was everything I had ever dreamed. I was exhausted, but I was doing it. I was actually getting to be a full-time mom. So much of our life up to this point felt like part-time parenting which is excruciatingly painful–ask any NICU parent. This simple joy of being with my baby and being all he needed was incredible.

Cuddling whenever we want!

Day Two: Things fall apart. Evan had been congested the day before, and I wasn’t able to get much of anything with the bulb syringe or the electric snot sucker we bought. I called the pediatrician and they said to keep an eye on it and call back the following day if he seemed worse. We had gotten an Owlet Sock for him at one of our baby showers. For peace of mind and to make the transition from constant monitoring easier, we kept it on him all but four hours a day (when it had to be on the charger). It doesn’t alarm like the monitors in the hospital. It won’t go off until the baby’s oxygen saturation reads 79% or lower (normal is in the 90s- preferably the high 90s). Evan’s went off five times by 1PM that day. Something wasn’t right. He was pale and lethargic. He needed to be stimulated to bring his oxygen back up. I took his temperature. 100.5. I knew what this meant, but I wanted it to be wrong so badly. So I called the pediatrician’s office as a last ditch effort to be told something different from what my gut knew to be true–I had to take him to the emergency room.

We lived 40 minutes from the pediatric ER. I couldn’t drive with him so unstable in the back seat this whole way. I called everyone I knew who worked in the medical field to come drive with me to take him in. I was on my last person, and if she didn’t pick up or couldn’t come quickly, I would have to call 911. This was NOT the stay at home mom life I signed up for.

Amy was able to ride with me. While I waited for her to come, I packed up everything I could think of that we might need if we got admitted which seemed highly likely to me. I let Alex know what was going on and told him to meet us there after work. When we got to the ER, Evan’s temperature had spiked to 102.5 and his oxygen saturation was 77%. He was dusky looking at best and barely moving or opening his eyes. They got him on oxygen immediately and waited for the pediatric team to decide if he needed to be in the PICU or regular peds floor. This would be the first of many ER visits for us over the next few months.

When Alex arrived, Amy left, and I let myself cry. The worst part of Evan being sick was that I knew how it happened. I caught a cold the week before and did EVERYTHING possible to keep him from germs aside from moving into a hotel. I washed my hands a thousand times a day, used hand sanitizer constantly, wore a surgical mask so I couldn’t breathe on or near him, limited my contact with him when Alex was home, slept separately from him when possible— the works. But it was inevitable. I blamed myself for us being in this situation. For only making it 18 days out of the hospital before being right back in it.

We got admitted that evening and spent the next six days waiting for Evan to recover and be able to breathe consistently without oxygen. This is what happens when a NICU baby gets a simple cold.

Sick little boy.
Exhausted but so glad to be able to spend the night with Evan in the hospital.

In the midst of Evan recovering from this cold, he also had some other mishaps. He screamed without stopping all night every night that we were there. It was his pain cry (which is actually his only true cry–everything else is just fussing). Eventually one of his doctors figured out that with the malformations in his brain, it was likely that he was having phantom nerve pain, so she prescribed a medication to alleviate this pain. It took a few days to kick in, but it worked! Evan also had his first G-tube button change while we were there. Not scheduled. At 3am one night, the balloon that keeps his button in place busted and his G-tube came out leaking stomach contents all over him and his bed. We had to wait forever for surgery to come fix it. It was miserable, but his night nurse stayed with me for three hours while Evan screamed in both our faces (we love you Loganne). Surgery also discovered that Evan had bilateral inguinal hernias that would need to be surgically repaired as soon as possible. Great….another surgery. Just what we wanted to hear.

Sweet, super pregnant Amber rocking our boy so I could just lie down for a few minutes.

During our stay, I went 62 hours in a row without sleep. Getting to stay the night with Evan was new for us since he had only ever been in the NICU before. It was wonderful but also so hard. Evan’s palliative care doctor had to get Alex to kick me out to go home and sleep. We were lucky enough to have Amber get pulled down to the PEDS floor while we were there, and we more or less demanded to have her as his nurse. Our NICU family was still taking care of us. Several of his nurses, doctors, and therapists came in to see him and check on us while we were there. We also started building our PEDS family that week. The nurses we had that week would become our regulars in our future PEDS visits.

My guys.

Evan was finally weened completely off the oxygen again and was ready to go home with follow up appointments scheduled to plan out his hernia surgery. This discharge was a lot happier than the last. We had gotten used to home and wanted to be back there.

HOME.

It is crazy to think about how chaotic that week was. Anyone who saw me could tell you I was a mess. I feel like I was “that” mom on the PEDS floor who nurses dreaded because I was so strict about Evan’s schedule. Even though I was a disaster, I am thankful for that admission because it helped me find my voice in advocating for Evan’s needs outside of the NICU. When we were on the 14th floor, I often didn’t have to advocate for him because he had a team of dedicated nurses who knew him just as well if not better than we did and loved him so much. They did it for us. Now we were in new, uncharted waters. The 11th floor was just different. Being outpatient was different. All of it is good, but we needed to get used to a new normal (again). I’m happy (and maybe a little sad) to say that we now have a sense of normal and routine in being on the PEDS floor or in going to over a dozen doctor and therapy appointments a month with Evan.

For me, being a stay at home mom has been a lot of being a stay at hospital mom. This was just the first of many admissions we would have in the months that followed. But I wouldn’t trade it. I am certain that God chose me specifically to be Evan’s mom, and I thank Him every day for that undeserved blessing.

NICU: Mischief Managed

We moved back to D pod at the end of July. I had some pretty negative emotions towards it because I hated the three weeks we had spent in there previously, and we had a really good carespace in C pod. We needed to get out of there quick! Or so I thought…

We had been prepared to be parents. We were prepared to bring home our baby, get little to no sleep, feed at all hours of the night, handle some spit up, poopy diapers, you name it. This is what we anticipated the majority of our pregnancy. NICU life was kind of outside of all of that if that makes any sense. Our life there was confined to the walls of the fourteenth floor. Now we were actually getting ready to bring Evan home. We’d be at home, by ourselves, with a baby who had been getting around the clock medical care for the past 80 some days. This was not what we prepared for when we were waiting for our sweet guy to arrive.

I recently read a post somewhere called “Welcome to Holland.” It’s about being a special needs parent. Essentially it says that it’s like preparing for a vacation to Italy. You plan and plan. You learn all the places you want to sight see, book your hotels, plan where you will eat, etc. But when your plane touches down, the attendant says “Welcome to Holland.” This wasn’t where you planned to be. You have to learn all new places to see, book new hotels while cancelling the ones in Italy, research new restaurants, etc. Holland is great. It is beautiful and wonderful, but it is not Italy. This is the sad paradox of being a special needs parent. You are overwhelmed with love and gratefulness for this little life before you, but there is still grace to grieve the life you had expected.

Bringing Evan home finally put me in a dark place. This was it. This was supposed to be the best moment of our lives. It was supposed to be nothing but joy. But, I suddenly was overcome with doubt, anxiety, and fear. What if I can’t do this? What will I do without monitors, alarms, and nurses here? What if something goes wrong, and I am home alone? I spiraled into full blown Post-Partum Anxiety, but by the time I called my OB to get medication, we were too close to discharge for it to kick in before we left. I couldn’t function. Remember before when I said I throw up from any strong emotion? Well, anxiety is a very strong emotion. Every time Evan cried I had a panic attack that led me to vomiting. I could barely eat. I couldn’t sleep.

We were supposed to go home on a Friday. Evan just had to pass his carseat test. Martha tried not to let us be there for it because she knew I would just stare at the monitor the entire time…she knew me so well (and still does). I convinced her to start it while we were still there though, and we left about an hour into it. He passed on the first try! I was SHOCKED.

Every time I called that week during the night, the nurses said “he’s been a little fussy.” Then he would sleep all day. Something felt off to me. His night nurses that week were ones he hadn’t had before, so they didn’t know him or his personality, and we were in a different pod now, so the rest of the nurses in there hadn’t really seen him much either. It wasn’t until Thursday night, the night we were rooming in (staying overnight in a special room for parents whose babies are about to go home) that someone else realized it wasn’t right. Brittany was back that night, and she could tell that Evan’s “fussiness” was not him at all. He screamed from about 6pm-1:30am at least that night. Something wasn’t right. To top it off, I came down with a stomach bug that night (different from my anxiety pukes) and we had to call off rooming in and go home. The next day, to protect Evan from germs, I couldn’t go to the NICU at all. I cried the entire day while Alex sent me pictures, and Amber reassured me that she wouldn’t let them send us home without assessing Evan.

The next day, I was alone with Evan the whole day while Alex went to Richmond for his brother’s wedding. It killed us that we couldn’t both be there, but we couldn’t leave Evan alone especially since something felt wrong. The new plan was to leave on Monday. However, his temps were low that day, and he was having more desaturations than normal, so his nurse asked the doctor to run some labs. They did a septic work up on him. They started him on antibiotics to be safe and they tweaked his feeding schedule a bit to try and help him be more comfortable. We didn’t go home that Monday, because we were waiting on labs and for him to be more himself still. Tuesday night we roomed in again, and things went much better. We got practically no sleep at all, but Evan was more himself. Wednesday morning we would be able to take him home! When the doc walked in that morning, I could see it all over her face. We weren’t going home. His blood cultures came back with MRSA (not at all surprised, but that will be a post all by itself–cue laughter from any of his NICU care team reading right now). They were pretty sure it was just a contaminated sample, but they couldn’t send us home without rechecking. Evan also got genetics labs pulled that morning too that we would follow up on outpatient. The new plan was Friday…again.

Evan and Addie
Evan and Brittany
Evan with Amber and Maegan

Friday came. Alex worked a half day because with all the back and forth, he had taken off too many days. He wanted to be able to spend two weeks at home with us as we adjusted before going back. Addie was working days now, so she was our nurse for discharge. It was so nice having one of his “people” there for this moment. It was even better that his other primaries came in just to see him off. Brittany, Maegan, and Amber all came in on their days off just to celebrate this moment with us. Like I said before–FAMILY. They have loved our sweet boy unconditionally from the moment they met him, and they continue to love and care for him (and us).

Maegan has presented Evan with a sock. Evan is FREE!

I was terrified, but so excited. We put Evan in his “discharge onesie,” and got all the paperwork signed, packed up his things, and got him in the carseat. It was really happening! Maegan even gave him a sock to free him from the NICU. It was such a fun moment.

Headed home!

The drive home was scary, but we did it! We walked Evan around the house to show him his new home (he was unimpressed), and then we just enjoyed being alone. It was surreal. We had a bunch of medications to keep up with and a rigid feeding schedule, and Evan still had his days and nights mixed up. Add in my PPA that was still not alleviated by my medication, and you get a rough transition. Alex was my hero in those first days home. I was still unable to control my panic attacks, and I would have to leave the room often. He took care of both of us that first week home, and I have no idea how he did it. Well, I do. It was Jesus.

Tummy time AKA nap time.

Discharge was such a picture of the gospel to me. I was in my time of most need. Evan is always in his time of most need. And there was Alex laying his life down for us. Sacrificing sleep and sanity to love us in the ways we needed expecting nothing in return.

Our first outpatient appointment!
Evan always looks so snobby. Turning his nose up and side eyeing everything. Still the cutest.

By the end of Alex’s two weeks off, we had tackled more doctor’s appointments than I can count, celebrated Evan turning three months old AT HOME, and kept the baby alive and mostly happy. He still wasn’t sleeping right, but we will take whatever victories we can get. Oh, and my medication finally kicked in, and I felt like myself again.

Tomorrow, I will tell you the triumphs and woes of my first days of stay at home momhood. I’ll tell you this: it’s not boring. That’s for sure. Life with Evan never is.

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.