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.
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!
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.
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.
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.
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!
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.”