The “Girls’” trip

No boys allowed. Not even Clark

I always question people who say they are not close to their siblings. Like, why? I’ve already shared my love letter to my brother, but I also have two older sisters, and I talk to them all the time. Every summer, my mom, 2 sisters, sometimes my sister-in-law Lakon, our combined 4 daughters, and I go on a beach trip. We first started this tradition when my eldest sister was in high school, and then it was interrupted for a few years while she and my other sister were in college, med school, grad school, etc. Basically they were too busy building their fabulous lives to go on vacation with me. Those bitches 🙄.

The girls’ trip. No boys are allowed. Not even tiny ones. I mean, think about it. Guys always want to do things on beach trips instead of just relax. Also chicken salad and fruit aren’t enough to satisfy them for lunch. So, basically they aren’t allowed to come and poop all over our trip. Seat’s taken, you can’t sit with us, bye Felicia 👋

Anyway, when Katie (#1) was pregnant with her first baby, we started up the tradition again. We stayed in a hotel on that trip, and Katie was all, “I’m cool, no worries. Y’all can watch TV while I sleep. It won’t bother me!” Five minutes later, the room next to us was being a little loud. She shoots up out of bed, grabs her slipper from the floor and begins smacking the wall, “BE QUIET!!!” She promptly lay back down with her eyes closed. Anna (#2) and my mom and I exchanged glances, turned off the TV, and wordlessly went to sleep at 7 pm 🤫. No one wanted that wrath (or slipper) directed at them.

We’ve since mostly stayed in condos, occasionally hotels, and most recently at my parents’ new beach house. We eat chick food, are supremely lazy, and laugh a lot.

One year, we were staying at a condo in Gulf Shores, and my niece chunked her baby doll’s pacifier off the balcony. She then cried and cried for it because toddlers are rational. We looked for ages, but never found that one. Then there was the year that Lakon had to dig a belly hole in the sand to accommodate her very pregnant belly. Then there was the year Katie took a muscle relaxer for her janky neck before playing cards and just got stupid. Probably the only time I’ve been able to beat her because she was literally moving in slow motion. I’ll never beat Anna. She’s a freak and can play a whole deck. Ugh, and last year I was about 11 weeks pregnant with Clark, and Darcy wasn’t walking yet. Toting her and our beach gear while I was miserably ill was awful, so Anna and Mom did the grunt work on that trip. Also Darcy was basically just miserable on that trip. She was demanding (surprise, surprise), and hated the beach after about 30 minutes. We tried to make it more bearable with a baby pool for her to play in. My sister Anna had to blow that bad boy up and ultimately it did nothing to convince Darcy that the sand and water were not the devil. Anna still bitches about that.

This year, we had our first stay in my parent’s new beach house. It is just beautiful, and I swear we had the best time! I should mention that Katie is a gourmet chef. Seriously, she is amazing and everything that we ate was sublime. My favorite was a sea bass dish she made. Also she mixes fabulous cocktails, and I was the only one to benefit because Anna is pregnant and my mom doesn’t drink at all. Katie and I also took the kids crabbing one night, and it was hysterical. Katie’s daughter is a beast at catching things and crabs are no exception. Anna’s kids–not so much (God bless ’em), but seeing all of them chase after those crabs was hilarious. We then took the golf cart off-roading. Not exactly intentionally, but memorable all the same. I really haven’t laughed that hard in a long time.

Anna has had a difficult pregnancy and doesn’t need to carry anything but herself, so Mavis, Katie and I carried all our gear to and from the beach each day. This wasn’t a problem until one afternoon where Darcy decided she needed to be carried across the sand. I told her, “No.” Cue the full-on meltdown. She screamed from our spot on the beach all the way to the boardwalk. We passed by a tent of people laughing and they pointed to her and said, “Does she happen to be about two?” “Uh, yes. How ever could you guess?” They just laughed and said, “Darcy, what’s wrong?” Darcy cut them an evil look and continued to sob. But guess what? The next day when I told her no, she didn’t cry (as much). So, I’m counting that as a win. 

My mom plans all these precious parties for the girls during the trip. She picks a theme for every night and it was just the cutest thing. The first night was a barn party, the second, a unicorn party, and the final night was a pink pirate party complete with a scavenger hunt. It was so much fun! The adults had just as much fun as the little girls. My mom really is amazing. She cares about all the little details and makes everything so special. She’s always been that way, and I strive to make similar memories with my babies.

Ladies, if you weren’t so fortunate to be born into a girl-tribe, then you’ve gotta make your own. Pick your friends and hold them close. Go on the beach trip. Help your girl out when she is big and pregnant and basically useless, and forgive them when they’re being a bitch (never me). Cook the amazing food and laugh at each others kids when they faceplant during a tantrum. Go off-roading with the golf cart. Make fun of each others hairy arms and talk about everything from Jesus to snissing to sex and all topics that fall in between. You can google snissing if you don’t know what it means, but if you’ve had a child then you’ve experienced it.

If you were born into a girl tribe, then you are lucky. Super lucky. Foster that relationship and love each other hard. Just because you aren’t close now doesn’t mean you can’t build that relationship into something worth having. Look, I love my sisters, but I definitely still argue with them. For instance, two weeks before the beach trip I told Katie she was uncompassionate and sucked at being a sister. Three days later, I apologized and told her that I knew I was actually being crazy, but she still sucked and was old AF. It’s all about balance, you see. I love these women so much. I mean, they’re control freaks and judgmental and not nearly as funny as I am (God bless ’em), but I love them and couldn’t imagine my life without them. I am #blessed.

Results?

And my crappy Lazarus analogy

Negative. Mayo Clinic has deemed the results negative, but did acknowledge an elevated level of glycosaminoglycans. They believe this to be from contamination, or could be a sign of some other disorder. So though the answer is not a perfect and resounding “NO!” it is more of a “Almost assuredly and mostly no.”

You would think I would have jumped for joy, but instead I felt immediate fear. What if the elevated levels mean that he actually does have Hurlers?! What if we have to repeat this test?! I CANNOT WAIT AGAIN! I will kill myself. I will jump in front of a bus. I will die because I cannot take one more ounce of stress. These thoughts were immediately followed by more fear that by me saying ‘I can not take any more’ that I was issuing a challenge to God to give me more pain and anguish to prove that I can take it. Cynical, I know.

I put too much faith in science and logic and exactness. Jesus knows that about me, and He wants me to trust in Him whatever the outcome, and I struggle with that–with saying, “Whatever the outcome, I love and trust in You.” Because a part of me, the sinful part, does not feel that way. I love Jesus when I receive His blessings and goodness, and I often lose faith in Him when “it’s not fair.” Jesus knows this about me. So, I believe He gave me a lab result that wasn’t quite perfect. And I reacted predictably–in simultaneous relief and despair.

I am reminded of John 11 account of Lazarus. Jesus loved Lazarus and knew he was very, very sick. Despite this, Jesus stayed where he was for 2 days and said (paraphrased), “This will not end in death, but this will be for God’s glory, and God’s Son will be glorified through this.”

Y’all. Lazarus died. He had been dead for 4 days by the time Jesus came into town. Lazarus’ sister Mary told him,”If you had been here, Lazarus wouldn’t have died!” And then Jesus opens the tomb of a dead man, tells him to get up, and he DOES! Like a mummy, Lazarus walks up out of the tomb. Seriously on the mummy part. John 11:44 says his hands and feet and face were wrapped in cloth 😱

What I’m trying to say, and probably failing at, is that God rarely gives me expedient, nice, and tidy answers. He gives me halfway answers, prolonged waiting times, and frustrating questions. I forget that an answer of “maybe” is not the same as a hard “no,” and sometimes I forget to be grateful for that. Jesus is working for something huge, here. Bigger than huge, even. My despair is caused by putting my faith in the world instead of the One who created it. Shame on me. Jesus is healing my baby. I’ve seen proof of it over and over again, and I still doubt. And today, He answered our prayers. Thank you for your prayers. I am blessed beyond measure by those who love and pray for me and my baby.

Clark is an overcomer, and we are mighty when we unite in prayer. Love to all ❤️

EDIT: I was hesitant to submit this update because my pediatrician wanted to talk to geneticist to clarify the confusing results. I decided to believe in the negative result. I pressed submit and my pediatrician called me immediately. He said that the Mayo Clinic geneticist said the elevated level was from craniosynostosis and NOT Mucopolysaccharidosis. You will never convince me that wasn’t Jesus. 😭👏🏻🙌🏼❤️

Splitting my face with a plastic sword

A sappy post dedicated to my brother

Caleb and Beka/Beka and Caleb.

We are the “babies” of the family. You see, I am the youngest of four children. (1) Katie and (2) Anna are only 3 years apart, but Anna and (3) Caleb are 5 years apart. Caleb and (4) Beka–well, we’re only 19 months apart. So, you can see that there is A) Katie and Anna. & B) Caleb and Beka. I am lucky–I was born into a really great family, and I am close to every single one of my siblings. But Caleb is different. We grew up together and are bonded in a way that only siblings one school-grade apart can understand. We knew all of the same people, were in the same Sunday school classes, and hit major milestones together. He was ahead of me by one year, so there were always those times that he briefly left me behind. Like while I was still in Jr. High as a freshman, and he was a sophomore. Or, when I was finally a senior, but he left for his freshman year of college. But we *get* each other. He’s the only person in the world as funny as I am, and I can tell what he’s thinking. I can feel it when he’s sad even if he’s far away. He shares all of my childhood memories even if he remembers them “differently.” 🙄

As I am feeling sentimental today, I’ll share a few of them with y’all.

One of my earliest memories involves Caleb killing a snake. It was the summer I turned 4 and I remember a small snake was caught in one of our pool gutters. We always loved emptying the pool gutters because of all the bugs and frogs in them, but on this day there was a small pissed off snake wrapped around the handle of the basket. Using a stick, Caleb bludgeoned and killed it. I remember thinking he was so brave. I don’t know that he even remembers…

When we were kids, we both played together and fought together often simultaneously. Once, while we were actually playing, he split my face open with a plastic sword. It was a Wednesday afternoon, we were playing outside, and we were told to come inside, so we could load up and go to church. I told him that we needed to go inside, but he insisted on his stupid, “Duck!” game. He said, “I’m going to tell you to “duck,” as he swung his sword at me. He told me to “Duck!” and I did. “This time, I’m not going to tell you to duck.” I wasn’t quick enough. BLAM! The sword cracked against my left cheek, just below my eye–hard. It hurt, but when I put my hand up to my cheek and pulled it back down, my hand was absolutely covered in blood. I screamed. Supposedly, you could see my cheek bone. I had to go to Memphis, and have a pediatric plastic surgeon suture it back together, so I wouldn’t have a massive scar. I’d probably be a lot hotter without my disfiguring injury, you big jerk. 🙄 Honestly, if you’ve ever seen it, you probably thought it was just a dimple, but it was a Caleb-made dimple. Injuries aside, we spent our childhood playing outside all day everyday; going fishing, catching crawdads, and playing in the hayloft of the barn, threatening to throw each other in the horse troughs. He was my built-in playmate.

In college, our relationship changed Surprisingly, it was the time we were most distant even though we were in college at the same small university. A lot of that probably had to do with who we were each dating at the time (we were constantly going in different directions), but also because I was pretty unforgiving and felt it was my duty to use separation to punish Caleb for whatever I deemed offensive. Now we are not twins, but we are far closer than your average siblings, and the pain that comes with separation (physical distance or emotional) is real. Even so, when I needed him, or when he needed me, we jumped to each others’ aid. When he broke his ankle by being an idiot, I helped him to and from the bathroom and to and from Algebra class at DSU. When I was at death’s door and some awful nurse at the DSU infirmary accused me of being drunk, he came to my dorm to rescue me. I had a sinus infection, bilateral ear infections, bronchitis, and a 103 fever by the way, you hateful shrew of a nurse. So even though we were mad at each other, we still helped one another.

Luckily, the rockier part of our relationship began to smooth out when he met his amazing wife, Lakon. Ugh, I love her. She’s the best, man. I mean, I can make fun of her for days–she makes it SO easy–and she’ll just throw it right back at me. We can laugh at Caleb’s expense, play cards for hours, and lay on “$150 rugs” at 1 am. She’s the best, and has become a real friend to me. I just can’t tell you how much I love having another sister. So, when I first started dating Ben, I really wanted Caleb to like him. Caleb, although kind to just about everyone, does NOT let many close to him. If he doesn’t like you or feels like you are “uppity,” he will hold you at arm’s length and avoid you. I did not want that for Ben and by association, me. Luckily, I didn’t have anything to worry about. He and Ben got along well at first, and are now basically best friends. Caleb calls Ben just to chat, and he DOES NOT DO THAT. They have major bro love, and I couldn’t be happier.

As we’ve gotten older and adultier, we’ve just become closer. When Darcy was diagnosed with craniosynostosis, Caleb loaded up his family and came to Baton Rouge within 3 days. When my 20-week ultrasound with Clark showed abnormalities, Caleb immediately called and told me he would be there that weekend if I needed him. When he graduated from Chiropractic school, I drove across 3 states for a total of 8 hours to see him. That night after I arrived, I was sharing a hotel room with my parents and my father started snoring. It was the worst. I called Caleb at midnight, and he drove to my hotel to bring me to his house to let me stay on their couch. Less than 24 hours after arrival, I loaded up and drove the 8 hours back. On my first official Mother’s Day, I was neck-deep in postpartum depression. I was exhausted, tired, and lonely. Ben arranged for Caleb’s crew to join us at his parent’s lake house as a surprise. It was the best surprise ever.

And now, Caleb is headed off to a new adventure in Florida. It’s stupid because I don’t get to see him much, but I feel the distance. He feels farther away because he is. And knowing that he won’t meet us at the house when I go home to Tobie stings. It’s hard. I’m so, so happy for him and his family, but I am also selfish, and I want him to stay close. I don’t want him to move on and make this fabulous life without me, filled with people I don’t know. It was hard enough lending him to St. Louis for school! Either way, he knows that if he ever needs me, I will drive forever and ever to be there. I would hitchhike across America for that boy because he’s the one I love best. I love you, Bubby!

The 2nd anniversary of my motherhood

Or, Darcy’s birthday letter

Bittersweet. According to Merriam-Webster, bittersweet is defined as, “pleasure accompanied by suffering or regret.” I know for a fact (okay, not really) that this word was invented by parents to describe the landmark occasion of their child’s birthdays. Today, Darcy is two years old. That two years represents so much to me. Such as:

1. The death of my beloved sleeping patterns. RIP late weekend sleep-ins.

2. The death of my intense selfishness–thank you God for working some of that out of me!

3. The birth of my motherhood. I’m a mom, which has been my greatest blessing in this life.

Darcy-bird, you are it, man. You are the most precious little 2-year old on this planet. You love to play outside. You pronounce “outside” as “a-die” by the way. Your daddy and I had no freaking clue what you were saying for like 2 weeks. Mattie finally figured it out–yay Mattie! You stall like a pro when it comes to bedtime. You have to say goodnight to EVERYTHING. Including the “tash” on the floor which means “trash,” which reminds me of another thing you brought into my life:

4. The death of my clean house. I used to be able to walk barefoot (LOL) without that special *grit* you manage to spread all over.

I know all parents think that their children are beautiful, but you ARE. You have huge brown eyes with long, perfect eyelashes. You have a luxurious mane of hair. You can’t even see that big scar from your surgery. In fact, it’s very hard to get all that hair wet during your bath. It repels water like a dog…in a good way, though. Girl, you make me so proud with your “I do it!” attitude, even if it stings a little sometimes. By that I mean that while I am so glad that you are self-assured and brave and independent, sometimes I want to shrink you tiny again so I can just hold you. That’s the bittersweet part, love. I never despair the passing of time. Really. I don’t want time to slow down or stop. Watching you grow is beautiful and special, and each birthday we’re given is an absolute gift from God. ABBA–who prominently stars in our dance parties–wrote a song called, “Slipping through my fingers,” and it describes your growing up best:

Slipping through my fingers all the time,

I try to capture every minute,

The feeling in it

Slipping through my fingers all the time.

Do I really see what’s in her mind?

Each time I think I’m close to knowing,

She keeps on growing

Slipping through my fingers all the time.

Sometimes I wish that I could freeze the picture,

And save it from the funny tricks of time,

Slipping through my fingers all the time.

I want so many things for you, baby. I want you to always look in the mirror and smile, just like you do right now. I want you to continue to drop it like it’s hot in the middle of the aisle in the grocery store when one of your jamz comes on. People may laugh, but you’ll get to groove to some awesome music, and dance parties have always made us feel better. I want you to always walk into a room, belly-first, knowing that you sparkle, and that you are an important person. The world will try to smash that out of you, but I’m going to do my best to fill up your love-tank. Your daddy will, too. I cherish these times with you, Darcela. I really do, even when you’re unreasonable, which is a lot because you are two years old.

You are the answer to so many prayers, and I know you are going to do so many big things. I just pray I get to see you accomplish all that God plans for you. I’m so proud of you little girl.

Broken for a purpose

Welcome back, Beka

Tomorrow’s the big day—back to work. Surprisingly, I’m not dreading it. The last three months have been so wonderful and also SO hard. I counted up all the appointments as well as I could remember–

OB/GYN: 3

Pediatrician: 8

CT scan: 1

Craniofacial surgeon: 2

Neurosurgeon: 1

Neurologist: 1

Cardiologist: 1

Orthopedic surgeon: 2

ENT: 1

Pre-op anesthesia: 1

Additional labwork: 4

Hearing screen: 1

ABR testing: 1

Helmet fitting: 1

Yeah…that’s roughly 28 appointments that I’ve been to on this maternity leave. And I’m not even including the 3 separate evaluations and 1 physical therapy appointment we’ve had so far because those were done in our home. I am tired, y’all. I am also thankful. I’m thankful that I was able to go to these appointments to rule out and/or monitor this baby. I’m glad we’ve been able to take the best care of him. But I will also throat-punch anyone who suggests that maternity leave has been vacation just because I haven’t been working at my job. Because my job is WAY easier and less stressful than taking my newborn to sit around in shady waiting rooms for 30ish appointments during the worst flu season in years. Appointments with potentially scary diagnoses. Neurosurgery and a PICU stay.  So, it has not been a walk in the park.

Even so, I feel really strong now. I’ve been lifting emotional weights for months, so I’m basically Channing Tatum now. My anxiety is completely under control, I’m back to running again (slowly), have lost all baby weight plus some (here’s looking at you, stress), I’m killing it in grad school, and I’m about to return to a job I love. While I am head over heels in love with little Clark, this maternity leave has been mind-bendingly hard. I have been the empty, crushed paper cup littering ball fields after the big game; discarded and swept aside. But…I have also been superwoman. The one with a clean house, fed kids, going on a run before showering AND shaving 💁🏼‍♀️, with dinner on the table when her husband gets home.

I’m thankful to my Jesus. No, He did not remove my suffering, and He did not remove my anxiety. He did; however, JOIN me in my suffering and anxiety. He healed my son, and surrounded me with people who ferociously love me and come to my aid on a moment’s notice. These people–my parents, sisters and brother, are like a pair of Spanx. They make me feel good, like I have my shit more together than I do and make me feel more confident without actually changing anything—just by staying very close. Also, Spanx aren’t easy to peel yourself out of, and my family is kinda like that, too. You can’t escape the Alfords. Thank God for that, too.

So, as I head back out into this world, I can say that I was broken for the better, and I feel stronger than I ever was.  This life is hard. Sometimes, it’s really hard, but there is always something bright to look toward, even if it’s just clinging to the smallest fleck of hope. Trust in Jesus, fiercely love others, and your rainbow will shine through, if you’ll just take the time to notice it. Love to all ❤

Coffee, neurosurgery, and the ability to hear

My second go-round with craniosynostosis

I didn’t prepare much.

With Darcy’s surgery, I prepared for days in advance. I bought the snap up/zip up onesies, I packed multiple bags, I gathered snacks, etc. This time I just couldn’t because I knew better. I can prepare all I want, but ultimately it doesn’t relieve my anxiety. Knowing Jesus is in control, and that “it is what it is,” tends to outweigh the fact that I packed the perfect onesie and have quarters for the vending machines.

The Friday before surgery we had baby Clark’s pre-op blood work done. Within an hour, the ENT’s nurse called me and said that his hemoglobin levels were low-8.7 and his wbc were low-4.6. Basically this means that Clark is anemic, and going into surgery, it’s not great to be anemic because this surgery involves significant blood loss, blah blah. We went back to the lab for a redraw to confirm results, and his pediatrician told us the surgery would likely be cancelled.

Agh.

I was so disappointed, and I called the neurosurgeon to see what the plan was. Her nurse told me, “Yes, *Dr. Whosit wanted me to tell you…Clark is anemic.” I said, “Yeah that’s what I’ve heard. When should we reschedule the surgery.” Confused she replied, “The surgery is still on. Dr. Whosit says it’s perfectly safe to proceed! Now, when they place the tubes in his ears, if they find ANY pus or evidence of infection, the neurosurgery will be cancelled because of the risk of cross-contamination. Until then, the surgery is scheduled to proceed as planned.”

Mavis (aka “mom”) came to Baton Rouge Sunday afternoon for support, and to take care of Darcy the night(s) we spent in the hospital. We ate Mexican and tried not to think much about the following day.

We woke up the morning of the surgery, ate chocolate croissants because they are delicious (thank you Trader Joes), drank all the coffee, played with Darcy, and took her to school as usual. We then turned around and headed to the hospital. Now, the surgery took place at the hospital I used to work in. I still work for that health system because the school nurse program is a subsidiary of their children’s hospital. Anyway, it was comforting to have the surgery take place there because it feels like home in that hospital. The people are great there, it’s a great hospital, and there is a CC’s located inside the hospital, so obviously that’s perfect. For non-Louisianans, CC’s is Louisiana’s Starbucks.

We got there, checked in, immediately finished up registration stuff, and then proceeded to Clark’s pre-op room. I’m pretty certain it was the same pre-op room Darcy was in. We changed him into his gown, new blood work was drawn to check his hemoglobin levels, and we played with the happiest baby we know. We met with his ENT, the neurosurgeon, and anesthesiologist for last minute surgical conversations and final consent forms. Signing the consent form sucked because I had to discuss possible outcomes for the surgery which included: hemorrhage, stroke, and death. Then I signed the consent form anyway, and we wheeled my little one down the hallway to the sterile hallway. They stopped the crib and told us this was the stopping point. I bent down, laid my hands on him and prayed that Jesus would protect him. Then I kissed his cheek and watched him roll away.

Within about 10 minutes, the ENT came out and said she was finished. She said she placed the tiniest tubes she had ever used. There was fluid behind each eardrum, but more significant was that one ear canal was completely plugged with vernix. Vernix is the cheesy looking stuff on babies’ skin when they are born. Somehow his ear canal got plugged up with it! There was no pus, so the neurosurgery could proceed.

Being flu season, there are signs EVERYWHERE throughout the hospital saying to go home if you have any symptoms of being sick. People, however, are inconsiderate idiots. There was a man in the waiting room coughing every 2 minutes. Without covering his mouth. It was that rattling, disgusting cough and I went to the desk to request a mask to throw in his face, but they were “out.” I couldn’t just sit there and get tuberculosis, so I went up to my old unit to see my old coworkers most of whom had been sending me encouraging texts already because they are so wonderful. When I get up there, they give me the sweetest card, a gift card to CC’s, and this walking dog toy that Darcy is completely obsessed with. I nearly cried. There really is no friendship like nursing friendships. I mean how many people will willingly help you place a flexiseal before going to lunch? Google that if you dare. Anyway, God really does place people in your life for specific reasons. I love them all.
An hour or so passed and I got a phone call from the OR. The surgeon was coming out to speak with me, and I needed to go sit in the conference room. Wow. It seemed too soon for them to be finished, and that was scary. Had there been a complication?
Both neurosurgeons walked in with big smiles and said that they were finished, it went perfectly, and the little booger was headed to the PACU! Clark required a big blood transfusion and FFP (fresh frozen plasma), but he was doing well and should be extubated (breathing tube removed) shortly.

Within 30 minutes we got to see little man in the PACU. He was so precious and sweet and perfect. He had the tiniest nasal cannula delivering oxygen to his little nostrils. One of my nurse friends came to the PACU to see me and it was so good to hug her neck! They transferred him to the PICU, and we went up to see him. Now that he was uncovered, I could see that he had 2 IVs, an art line, and a foley.

He was still requiring some oxygen but only 2L. I tried to nurse him, but he was completely gorked from anesthesia and too sleepy. A few hours later, he did nurse and it was good to hold him. I occupied myself with discovering Apple Music which is a BRAND NEW THING in my world 😲
My old coworkers, friends, and family can tell you that I am not tech savvy. At all. I still have an iPod nano. No music has been downloaded onto that bad boy since 2012. I listen to burned cd’s from high school and college on car trips. I had an Iphone4s forever. Like with the old-style charger that no one had when I was working 12-hour shifts. It was a dinosaur and I couldn’t even download the iPhone updates. So, now I have a semi-current iPhone and just discovered that for $4.99 a month, you can have unlimited downloads. What?! So yeah, I spent the next few hours downloading music while baby Clark slept, and Ben worked on homework.

The night came. And we had one very *awesome* recliner to share. I was exhausted, but every time I almost fell asleep, Ben would move or sigh or do something else equally aggravating. Finally, I told him if he moved again, I might kill him. So, he got up and went to the rocking chair that sounded like a cat getting its tail chopped off whenever the chair was rocked/moved even a fraction of an inch. Yeah. Not happening. I made Ben come back to the recliner, and he and I lay opposite of one another. Like my feet in his face vice versa. We fit much better than way and got some sleep. I woke up at one point because Clark was stirring, and his heart rate kept jumping to 130+. I nursed him, changed his diaper, and requested pain medication. He calmed down and slept well.

The next morning, the surgeons rounded and said that if Clark’s pain was controlled and he ate, pooped, and peed then he could go home! She asked us to pick him up and handle him well to see if pain was going to be an issue. We gave him some Tylenol, and he was just fine! Cooing and eating and playing. Better still, he could HEAR!

https://raynershinecom.files.wordpress.com/2018/02/img_3302-2.mov

We left early afternoon, went home, and napped.
Two days later, and Clark is doing so well. He gets a little restless, but with medicine, snuggles, and lots of kisses, he is just fine. He will have his first helmet appointment tomorrow afternoon. They’ll measure his head and get him all fitted for his new accessory. He should have it within the next week or two. It’s been night and day from Darcy’s surgery, and I couldn’t be more grateful. Clark has had minimal pain, a short hospital stay, and wonderful care. My family and friends have been more than supportive, and I cannot thank them enough. Love to all ❤

What the hell is craniosynostosis, anyway?

And why I know so freaking much about it

What is with this weather, man? We’ve had snow twice this winter in South Louisiana. It’s cold and weird, but I don’t hate it. School closed for an entire week, and we got to play together as a family. From looking at social media, most parents were complaining that their kids were making them crazy. Maybe Darcy makes me crazy on a daily basis, but I honestly loved having Ben and Darcy and Clark and I home together. It was a continuation of Christmas break, and I think we needed the down time. Ben is in school at LSU for his last semester of engineering, so that’s why we’ve been able to enjoy the breaks together. He does work part-time, but his office was closed during the snow fiasco because the entire state of Louisiana shut down.

Now, some of you remember that Darcy was diagnosed with craniosynostosis at 5 weeks old. What is craniosynostosis? Well, when babies are born, their skulls are not one solid bone. They are actually several separate bones held together by lines of fibrous connective tissue called sutures. This allows the skull to expand and accommodate a rapidly growing brain. With craniosynostosis, one or more of these sutures is fused too early meaning proper skull growth cannot occur. If the skull cannot grow as the brain grows, intracranial pressures can increase and cause brain damage. Also, the child will have an abnormal head shape. There are certain syndromes associated with craniosynostosis, but most cases are non-syndromic and only involve one suture. Darcy’s was non-syndromic sagittal craniosynostosis. She underwent a total cranial vault remodeling surgery at 12 weeks old. It was hard, it was brutal, but she is growing, thriving, and developing perfectly.

I am both a nurse and a mom. A lot of people say, “When it’s your kid, it’s different,” but I seem to be an exception. It’s really hard for me to turn the nurse off. I assess my children critically and clinically. I knew that Darcy was a beautiful child, but I also knew her head shape was different, that her temples were dimpled inward, her head was narrow, she didn’t have posterior fontanelle, and that she had a strange ridge down her head. I remember mentioning it to her pediatrician as he assessed it. We got scans that day, and she was diagnosed. When Clark was born, I noticed immediately he didn’t have a posterior fontanelle and had a small ridge down his head. I specifically asked the neonatologist (who was stupid about a lot of things) if the MRI showed craniosynostosis. He said “No way.” I can’t let things go, and it gets me into trouble sometimes. When something is bothering me, I get total word vomit–I just blurt it out and throw my persistent thought/worry out into the universe, and not always so elegantly. Ben jokes that he never has to wonder what’s bothering me because I’ll just straight up tell him. In my heart, I knew Clark had craniosynostosis despite what others said.

“But the MRI showed he didn’t.” “His head doesn’t look as narrow as Darcy’s.” “He looks just fine.”

I mentioned my concerns to our pediatrician at Clark’s one-month appointment, and he said we could just continue to monitor it. That held me over for like 2 days before my propensity to not let things go led us back to his office requesting imaging studies. We got an X-ray of Clark’s head that was consistent with a craniosynostosis diagnosis. Our pediatrician then referred us to Darcy’s craniofacial surgeon who we love ♥️At that appointment, he told us that he was moving to California in 2 weeks and unfortunately the neurosurgeon on Darcy’s team has retired😭

–This was devastating to hear, but moving on–

He told us that without a CT scan we couldn’t be 100%, but that Clark looked like he had partial sagittal craniosynostosis whereas Darcy had complete sagittal craniosynostosis. This would qualify him for a less invasive surgery using an endoscopic approach. This means they would use a small incision to remove the fused suture, and then use helmets to shape his head over the better part of a year.  Our CT scan the following day confirmed what we knew—Clark has partial sagittal craniosynostosis. I asked our craniofacial surgeon why both of our children had this and what could cause this genetically. He said that the sagittal suture is typically NOT associated with genetic origins. He said that it was “extremely rare” to have 2 children with non-syndromic sagittal cranio. I asked “How rare?” and he said that he had actually never seen it occur twice in a family. We’re SpEcIaL! Ha! Honestly, after the hell we’ve been through, the fear and anxiety, this seems like small(ish) stuff. It’s probably a mark of how bad shit has been when you look at neurosurgery as not a big deal, but we don’t see it as that big of a deal. Not after what we’ve been through. This is fixable, man.

After Darcy was diagnosed with cranio, I swore I would never miss that diagnosis as a future practitioner. I never anticipated having another child with it, but we did, and I didn’t miss it. We’re getting an early jump on it, and we should be meeting with our new neurosurgeon in the next few days to come up with our surgical plan for baby Clark. He should also begin physical therapy in the next couple of weeks as well. His tone IS improving, and he’s pretty much perfect in our book.

Darcy loves “baybee.” In fact, we wish she would love Clark less. She excitedly runs up to him and throws blankets over his face and body so he won’t get cold. She jams his pacifier into his face as he screams in protest. She tries to pick him up and is the opposite of gentle. It’s actually probably a good thing he’s going to be wearing a helmet 23 hours a day after his surgery. Darcy has added so many words to her vocabulary. She got a toy kitchen from Santa Claus and begs us to play in her “kitch” every day. She loves to throw and drop things while yelling, “Oh, no!” She says “okay” after everything, loves to play outside, and yells, “Go Saints!” whenever she sees football on tv. Darcy loves to point to the chair, couch, or floor and tell us to “Sit.” We’ve been going to the grocery store every Sunday just the two of us, and she likes to help put the groceries on the conveyer belt. She’s the best little toddler I know.

I decided to return to grad school this semester because my life is very calm, and it’s a very rational choice. 😑That’s a glimpse into our crazy lives right now. It is legitimately crazy and unfairly blessed. I am thankful to my Jesus for this life. Love to all.

P.S. That picture is from our craniofacial surgeon’s office. We have the same picture of Darcy at the same age. It’s becoming this weird family tradition 😂