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.
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?
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.
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.
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.
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.
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.