A Glimpse at Our Comedic Life

I think this blog can be kind of heavy, and with some of the posts I have on my heart for the near future, it will continue to be so. However, I really want to stress that we do find so much humor in our parenting journey. Yes, it is definitely (more like obviously) not all sunshine and rainbows, but there is so much good and so much laughter. Sometimes that laughter comes a little after the fact when theres time to step back from a bad day or moment, but it’s there. This past Friday was one such day.

I’ve shared in a previous post how isolation for cold/flu season has been wearing me down a bit lately. Though I know at my core I am an introvert, after several months of such limited contact when I used to be surrounded by hundreds of students (former high school teacher here if you’re new) and then dozens of nurses and doctors, I am ready for this isolation to be over. And, of course, I say that now, but when the time comes, I will probably cower in the house in fear of germs or overstimulation for poor Evan. He really struggles with that one.

But anyway, the point is, outings lately, even if they are just to the doctor, have been kind of wonderful (which is great considering we have about a thousand appointments coming this week). It gets us out of the monotony of days spent at home where I have one sided conversations with a nine month old who sometimes is a little rude and yells when I am talking to him nicely or poops on me. So last week, I was so excited to have two days where appointments took us out of the house! I even added a quick trip to the Starbucks drive thru a different day because Mama always needs more coffee.

Friday was our bigger appointment of the week: a nine month check up and his next dose of synagis, a special vaccine for high risk babies like Evan to help protect them from RSV. The shot is a MAMMOTH of a shot. It’s thick, and it’s about 2mLs of liquid….so not fun at all. But this is our fifth dose, so we have the routine down: the shot happens, Evan squeals and screams, I snuggle him and play “Baby Shark”, and within five minutes he’s back to normal like nothing ever happened. I think I have become completely immune to the “sad mama” reaction to shots and needles for my guy which sometimes makes me feel like a terrible mom but in other ways makes me feel like I am kicking a** at this whole motherhood thing.

The plan was leave early to swing by the prosthetics office to return Evan’s old helmet he was allergic to, pop down the street to the pediatrician, then finish off the outing with a little coffee reward for myself for another successful doctor’s appointment. Then we would watch a Harry Potter marathon on the SyFy channel for the rest of the afternoon while we played and did some PT work. Easy peasy!

Well, not so much. I started my day sleeping through my alarm to get Evan’s morning feed started (this happens almost every day, so no big deal). I get to his crib; we exchange pleasantries, and then I go to get everything going for our day. Except…only one of us chose to be pleasant past that initial “good morning.” I have said before that Evan doesn’t really cry much. He will fuss, yell, and angry thrash, but he only cries when he is in pain or feels really crummy. We had real tears this morning….and we hadn’t even gotten a shot yet. Woooo. What a great start. You know those days that you just know in your gut are going to suck even before they’ve started? Yup. This was one of them.

He finally chilled out enough for me to not feel horrible about taking a fast shower so that I didn’t look like a human piece of garbage at the pediatrician’s office— if we had been scheduled with our doctor that day, I probably wouldn’t have bothered. But, she wasn’t in the office that day, so I figured I would try to look like a person. I had gotten the diaper bag checked off like I always do before trips out to make sure I had all the essentials which includes checking the level on our oxygen tank. Everything looked good to go. The tank was not all the way full, but what I saw showed at least three hours worth of O’s for Evan.

We headed out in the rain (in case you haven’t been around Virginia lately, its basically underwater). I looked at the clock in my car: we would be early! This NEVER happens. I pulled into the prosthetics office and called the reception desk to see if they could just run out and grab it so I wouldn’t have to do the complicated dance of getting Evan in and out of the car for a 1 second task. They happily obliged my request which was so nice and helpful. Then we rolled down the street, parked in a prime handicap spot (don’t worry, Evan has a tag; we didn’t break the law), and got out and into the building. Things were going GREAT! We were a full ten minutes early.

I like that it uses the wording “not yet” rather than “no.” I will give it that.

We rolled into the office adjacent to our doctor’s (its a big practice so they have three offices on one floor for efficiency). I walked up to the receptionist and checked in. We had never met her before. She said “Okay, you’re here for a well-check, there is some paperwork for this one.” I knew what she was about to hand me. I had prepared my complex kiddo mama heart for it, and decided to just fill it out and laugh later. Had the receptionist known us and Evan, she never would have handed it to me. If you have kids, you know the paperwork I am talking about: the nine month development check list. I quickly read through it and filled it out….we answered “not yet” to every single question. There was also a question about listing all health concerns the child has had in the past few months. I just put the highlights because I figured it’s all in his chart, what’s the point?

“Does anything about your baby worry you?” I’m not going to lie, I actually snorted with laughter in the waiting room when I read that one. Part of me really wanted to write, “Okay, so how much time do you have? Because this might take a while.” Also, I don’t know any mom out there who isn’t worried about at least 10 things going on with their babies at all times. It’s not healthy, but we all do it. What a silly question.

I knew the checklist was coming. I knew it would be mistakenly handed to us. I knew it didn’t matter for Evan. I knew he was making his own amazing progress lately. I knew that Evan ran on Evan’s time and no one else’s. But–seeing three pages of “not yet’s” kind of let it sink in just how “behind” he was. There were even milestones for 2-6 months old that I would have had to answer “not yet” to if they had been on the questionnaire. I texted a fellow NICU mama from the waiting room to vent about the checklist and remind myself that I wasn’t alone in this feeling. Gosh, does that help. I don’t know about you, but hearing the words “me too” in any hard situation can bring so much comfort. We’re not made to do this life alone. In that moment, I decided that I would truly not care about it. I didn’t even finish the last page, and I let our care coordinator use the first page to write something down and take with her. I laughed with her that the answer to everything was “no” so it’s not like anyone needed to actually read it. She reminded me that it was given to us by mistake for sure and not to worry about it or think anything of it. She said, “Evan does what he wants when he wants.” Boy, is that true. In that current moment, what he wanted was to chew on his nasal cannula; it was in his mouth.

Despite being so early, the office was busy and running a bit behind. No worries for us, we love to be out! However….things started to get a little stinky, and knowing Evan there was a giant lava poo waiting for me in his diaper. I was really hoping we’d get called back soon. Then I noticed his blood oxygen was a little low on his monitor, so I checked to make sure the cannula was in his nose and then checked the level on my tank. Surprise. The gauge was reading in the red. We were running out. I did the math in my head and I knew we would barely make it through the appointment on the tank if we even made it that far. Good job, Mom. The most important thing on an outing is breathing, and you just really dropped the ball there. I told the receptionist our situation, and they got us back into an exam room within a couple minutes. The nurse brought in another oxygen tank, so Evan could run on theirs until we left. Crisis averted, but I was so embarrassed. Once again, where is my “Mom of the Year” trophy?

They apologized for giving me the form a second time (and really, I am not mad at the office, nor was I ever truly mad at anyone for handing it to me. It was an honest mistake, and they were so nice about it.) We got Evan measured and weighed, and they gave him a new board book to take home! How sweet! I love our doctor’s offices. The nurse was so nice as I continuously tried to assure her that I have NEVER left the house without enough oxygen before. She laughed with me and said, “Girl, you have so much on your mind with this little guy, it’s alright!” I made sure she knew we had a back up tank in the car that was full. I could switch it out as soon as I got him in the car, and we would be fine heading home.

If you read my last post about Evan’s MRSA, you may laugh with me here. She looked at Evan as I wiped his eye clean and said, “So how long as his eye been draining like that?” I laughed out loud and told her “his whole life. Just ignore it. It’s getting fixed in a few weeks.” Then I told her about the blog post I had just written. She went to prepare Evan’s horrible shot while the doc came in to look him over. She gave him the all clear for surgery in a few weeks and said he looked great for all he has going on. She also apologized again for them giving us that form. They wouldn’t have handed it to us if the receptionist had known Evan. It was really all just because we were in the different office that day. I told her it was really okay but that I appreciated how kind everyone was about it. She said as soon as Evan got his shot, we could check out.

Fat boy over here finally hit the 1st percentile for weight! We’ve been below it his whole life! Huge day for big man Evan!

Our sweet nurse came back with that dreaded syringe of necessary magic, and Evan responded just as expected. A high pitch squeal and scream then some super dramatic crying. I got his sleeper snapped up and scooped him up for a good snuggle and we danced around the room to “Baby Shark.” But he was still crying. After three rounds of the song and lots of cuddling, I gave up and decided he would likely just calm down and fall asleep once we got in the car. Oh, I should mention that in the process of this visit another mom fail was brought to my attention. I not only left the house with an almost empty tank (because sleep deprivation apparently makes you incapable of reading numbers), but I also forgot to plug his pulse ox in the night before so its battery was dying. Still waiting on that trophy. So if I hadn’t had the back up tank, I would have been rolling home, in the rain no less, on a quickly emptying tank with no way to monitor Evan’s O2. I looked at the nurse when I realized all of this out loud and told her she could just go ahead and call CPS on me now because clearly I was an unfit parent. We laughed together and she reassured me that I was doing a good job.

Evan continued to scream like he was being tortured as I got him in the car and on the fresh tank. Did I mention it was raining? Yeah. I was soaked from all of this dog and pony show I had going on just to get ready to drive home. I always wonder what strangers think as they watch me maneuver all of Evan’s equipment and such when we get in and out of the car. If you’ve witnessed it, it’s kind of a ridiculous mess of semi-organized chaos. I’m sure it looks funny from an outsider’s perspective. We headed out and I realized that the dying pulse ox machine was just giving me bogus readings that made no sense so it was going to beep our entire way home. No thank you. I turned it off because lucky for me “crying is breathing” is a mantra we live by in the Norton house, and Evan was just reassuring me the whole way home that he, in fact, was breathing just fine.

It was only 12:30, and it had already been such a long day. I was feeling like an epic failure as a parent, and I just needed a little pick me up. I am sure I’m not the first mom to roll through the Starbucks drive through with a screaming baby in the backseat, if that’s been you, you are my people. I got the largest size latte you can get with extra espresso because if I was going to make it to 5 o’clock when Alex got home, I was going to need it.

His shirt says, “Dumbledore’s Army.”

We got back into the house with minimal clumsiness and Evan finally calmed down twenty minutes later. He has never cried that long from shots in his life…and this kid has seen more needles than most. Heck, one time they drew his blood and he didn’t even flinch. I got all of his things situated for the afternoon (meds drawn up, feeding pump cleaned and refilled, diaper changed, new outfit (we leaked some stomach contents when we pulled our G-tube open)), and we settled in for a good long snuggle with some Harry Potter on the TV. The day had definitely turned around. Partly thanks to some Tylenol and gabapentin, but who’s keeping score? I like to think it was my magical mama soothing powers. Lol. Just kidding. I don’t have those.

He was sucking on it like it was a pacifier. What a little weirdo.

I think I forgot to mention we (which always really just means I) got little to no sleep the night before. After spending most of the afternoon fighting the nasal vs oral cannula battle with Evan, by 6 o’clock I was falling asleep on the couch. As I told Alex all about our day and how much of a disaster it was I really couldn’t help but laugh. These crazy, messy days can be so hard, but honestly, they sometimes bring me the most joy. Because in them (well, usually after them) I can see the humor and comedy that is our life. We could seriously have a reality show. I feel like just my embarrassing mom dancing could get us great ratings all on its own. Or maybe the way I think that explaining the function of a nasal cannula to a nine month old might actually change how he feels about it being on his face.

Alex pampered me that night. He cooked a delicious dinner and let me go to bed before the baby and took all of the night duties so I could sleep through until the morning. Granted I apparently woke up and claimed I could take the baby at one point when I couldn’t even open my eyes. Oh, sleep, you beautiful friend, how I love you and miss you always.

But that’s it. There’s a glimpse into our ridiculous life. Please do not leave this post feeling sorry for us or heartbroken or whatever other mushy feelings you may have been prompted to feel. We really do find so much humor in our adventures in this “unconventional” parenting. Laugh with us. Be joyful with us.

DON’T FORGET!

Email me your questions about Evan through the contact feature on the home page of the blog! I will try to answer all of them in a Q&A post late in the week! No question is too small. I throw so much out there in these posts that I know I am bound to fail to explain things clearly at times. I want to help the world understand our boy and how awesome he is, so help me do that by letting me know what you want to know about him (or even us as a family). If using the contact feature isn’t your jam and we’re friends on Instagram or Facebook, you can shoot me a private message there too.

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.