The DMV, phone murder, and “Sh”

Boring occurrences in my newly boring life. Thank God for that!

Four years ago, I went to the DMV in Christiansburg, Va. I needed to get a license with my new married name, so that I could update my nursing license and have everything consistent. It was as bad or worse than any DMV in Mississippi. They wouldn’t accept my proof of address. I brought the envelope the Social Security Administration sent when they sent my updated social security card. Rejected. Apparently it wasn’t as official as the AT&T bill that was sent to my house with my name on it. The one I had to get out of line (after waiting 1.5 hours) and drive back home for, come back with, take another number, wait another 1.5 hours, and THEN hand to the dragon lady who approved it right way. Le sigh.

Anyway, since that lovely experience, I have successfully avoided the DMVs in Ohio and Louisiana…until this week. It was time for me to become a Louisianan, and that’s hard for this girl. Because I kinda resist belonging to anywhere new. Anywhere other than my little hometown. When people ask me where I’m from, I always say, “Well, originally I’m from a small town in North Mississippi, but I live in *insert Virginia/Ohio/Lousiana* now.” So maybe that’s part of it.

Nah. Let’s be honest, it’s mostly that the DMV is the devil’s playground. Filled with long lines, screaming children, coughing adults, and DMV employees ready to deny your paperwork and send you to the back of a line stretched all the way out to freaking Serbia. I was a big girl, though. I went. I got all of my paperwork together the night before and reserved my mother-in-law to watch Clark for the morning. I was going to get there well before opening (8:00), so I could be first in line. Then life happened. Clark took a long time to nurse that morning, the Clark drop-off took a little while, and I made a wrong turn on the way to the DMV. So, when I pull up it is 8:05 and there is already a line, 40 people deep wrapped around the entrance, and an additional 20 people seated on the waiting area having already checked in. Mother eff. That is exactly how I planned for things NOT to go.

From there it was actually pretty uneventful. I checked in, waited an hour and 15 minutes, almost had my proof of address rejected, then finally obtained my new drivers license. Honestly it could have been way worse. It was very boring though, because I didn’t have my electronic companion to distract me. You, see my new(ish) iPhone had suddenly stopped working. Yeah, it said “No service.” No matter what. This happened one month earlier and I had to pay a small fortune to upgrade early and get a new iPhone. And now this new phone that was crapping out in the exact same way as the old one did a month ago. I left the DMV and took it to Sprint where they told me that Apple had probably killed my phone. The second phone in a month. She told me to take it Apple to get it fixed. Ugh. So off to the Apple store I go where I signed in, walked over to the food court and got a pretzel and then came back to talk with some Apple person at the “Genius Bar.” 🙄

You see, I am so not into the hipster, blue ponytail, tech-savvy thing. Look, if mermaid hair is your thing, I don’t judge. I’m just not a very dubstep-listening, bohemian dress-wearing, free-bleeding,  hookah-smoking individual. I mean, I still don’t even know what the Cloud is much less what it actually does. And I have an iPod nano. And I wore the worst pair of mom jeans in college when you’re supposed to look totally hot. So, I’m not a trendy, “with it” person. So, the Apple store is like my personal hell because I have zero tattoos, and all I know is more gigabytes means more pictures of my dog and kids.

Anyway, they confirmed I had yet another dead phone, and then told me they had to send it off to Apple. They were going to give me a loaner phone for the meantime. Unfortunately the first two loaner phones wouldn’t cooperate with my SIM card. “Wow. That’s unusual,” Apple hipster said. “Um not for me. This kind of stuff always happens to me. I’m the black widow of electronics and technology,” I joked. “Don’t be so hard on yourself. Be positive! It’s not your fault. I will help you until you have a phone. Don’t blame yourself,” He replied very seriously. Soooo it was awkward because obviously he just didn’t get me and apparently thought I was something close to suicidal because he called over 2 other associate hipsters to help with my SIM and “soothe” me? It was strange. Whatever, man. Thanks for helping me out. I will be sure to be very serious when I pick up my phone–no black widow jokes.🤐

So there. I adulted hard by going to the DMV, Sprint, and the Apple store all in one day. Give me a cookie! My kids are the most fun lately.

Darcy talks non-stop and she puts an “sh” sound for s’s. So, cheese becomes “cheesh,” mouse becomes “moush,” etc. My favorite is applesauce or “appashosh.” She also LOVES to be bossy. Like she yells, “No! No!” at Libby while Libby is asleep on the couch doing nothing. She has started majorly stalling when it’s bedtime. Her nighttime routine: We always read 2 books, let her turn on her fan, say goodnight to the other parent and baby, rock for a while, then bed. Now she has to say goodnight to the other parent and baby and Libby and the TV and the lamp and the couch and the dust bunnies (for real) and/or whatever other object she feels like saying “night-night” to. Lately, she also has to “wash” her hands in her play-kitchen sink before rocking to sleep. It’s just funny to watch her stall. She’s officially obsessed with baby cock. Yeahhh. She’s changed from calling him baby *clicking noise* to calling him “baybee cock.” I mean, it’s not a sound, but does it have to be slang for penis?! 🤷‍♀️Whatever, man. It is pretty funny.

Clark is recovering from his surgery very well! He’s sleeping well, and eating well, and honestly you wouldn’t know he even had surgery except for the incisions on his head. He’s a velcro-baby though, just like Darcy. He NEEDS to be held 24/7 by me. Which is awesome except I need my bath at night to be away from the world and lately he’s totally screwing with that. I guess I’ll keep him anyway. SO that’s what’s new in my world. Pretty boring. I’m aware of that. But after the last few months, boring is nice. 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 ❤

“Surgery? What?! I can’t hear you.”-Clark

Or at least that’s what he WOULD say

When Clark was born, he failed his initial hearing screen. He was a c-section baby, and a lot of times these babies retain fluid in their ears and even lungs because well…they don’t get squeezed in the same way they would if they were born via vaginal delivery. So, failing his hearing screening wasn’t all that impressive and we made an appointment for a re-check at one month old. He failed this hearing screening also. They performed another test and they were able to determine that one ear failed because of fluid but they couldn’t say for sure if the other ear was failing because of fluid. I didn’t know why he failed, but I KNEW he couldn’t hear me. He doesn’t respond to sounds. I can clap my hands and his eyes don’t even flinch toward the noise. Now, I had to worry if my child was deaf. They told me we could either repeat the hearing screen in 2 weeks or request an ABR to diagnose.

I chose the ABR testing. ABR stands for auditory brainstem response. It tests the actual acoustic nerve. So, basically, it can tell what’s wrong and how bad it is as opposed to the hearing screen, which can only say pass or fail with no information as to why he failed. I called and made an appointment for the ABR. Now, this was about the time that I wanted my child’s cranio diagnosed, so I had an appointment with his pediatrician the day after his second failed hearing screen. At that appointment, my doctor diagnosed Clark with an ear infection which probably didn’t help him with his hearing screen the day before. We started antibiotics and proceeded with our craniosynostosis diagnostics.

A week ago, we had his ABR screening. It was super stressful. Of course, I was worried Clark may be deaf, but it’s also kind of a tricky test. Clark had to be asleep for the whole thing which takes over an hour. I had to keep him up all morning and kind of starve him. That way, when we arrived at the facility, I could nurse him to sleep. My generally sleepy baby did NOT want to sleep because real life is a real beyotch sometimes. It took the first hour of our appointment for him to even go to sleep. Then it took an additional hour for the test to be performed. I was so scared he was going to wake up and ruin the test, and every time he stirred my heart would start pounding and I would internally scream, “NO!” Thankfully, once he finally fell asleep, he did not wake up. The audiologist explained the ABR test results immediately—cue the praise hands! The test determined that Clark had moderate/severe hearing loss, BUT that his bone conduction test was normal. This is super important because it tell us that his disfunction is conductive and NOT sensorineural. For nonmedical people, this means his ears are fine, but they’re plugged with fluid. Still. It hasn’t gone away like it should. It needs to go away for him to be able to hear. Tubes could help with this.

I knew that to “qualify” for tubes, they (ENTs) want children to have had multiple ear infections and be at least 3 months old, but I made an appointment with an ENT and prayed she would put tubes in his ears even though he is only 2 months old and has only had one ear infection. I hoped that they could just put the tubes in his ears when he goes under anesthesia for his cranio. I met with the ENT and she reviewed his history and said,”He failed 2 screenings and the ABR, has had an ear infection, can’t hear, and is going under anesthesia in 2 weeks, anyway?” I said, “Yes.” She said, “Let’s do tubes. If I can’t fit tubes in his tiny ears, I’ll make a small hole and suction the fluid out anyway.” I said, “Thank. You,” and I asked her to run away with me. Just kidding, but after a lot of disappointing appointments, this one was really great.

All that to say that Clark will also be getting tubes on the day of his surgery! I’m so relieved. There has been very little that I can do to help my son. Mostly, I’ve had to take the watch and wait approach, and I’m thankful we won’t have to do that anymore with this fluid in his ears.

Clark’s big surgery will be on Monday February 19th. I am ready to have it over with, but also dreading the recovery period. Darcy’s recovery was brutal. She cried for over 36 hours about 5 days after her surgery due to a pain crisis. For months, I would start having anxiety attacks when she started crying for any slightly extended length of time. Her craniosynostosis was more severe and the surgery was much more invasive than Clark’s will be. Her surgery required the top half of her skull to be removed, cut into pieces, and then put back together with resorbable plates and screws. Yes. Brutal. She had an incision from one ear to the other. His is endoscopic, which will require two smaller incisions on either side of his problematic, fused suture. Through these incisions, they will remove the portion of his skull that includes that fused sagittal suture and remove strips of skull bone on the sides of his skull as well. So, I don’t imagine he’ll feel awesome–it IS neurosurgery, after all. But he shouldn’t have quite as much pain as Darcy did. Within a week or 2, he will be fitted for a helmet to wear for the better part of a year. It will help to shape his skull as he continues to grow. *Bonus* It will also protect him from Darcy. He is not expected to stay in the hospital more than a couple of days. Hopefully, we will be able to go home quickly and start the road to recovery.

So that’s what’s been up.

Specific prayer requests include:

1. The surgery will go smoothly and as planned

2. Blood loss will be minimal, and he will not require blood transfusion(s)

3. His pain is well-controlled

4. We quickly leave the hospital, complication and infection-free

5. The tubes will solve Clark’s hearing problems

If you are still reading, thank you for being a part of Clark’s cheerleading squad. It has been quite the journey and this surgery is just another stop. I hope that Clark’s story will bring all the glory to our Jesus. He has been faithful to answer our prayer requests and has blessed us immeasurably with this little boy. We are thankful for your support, love, and prayers. Love to all.

I am perfect. Except when I’m not.

We can all agree that there are some days that we just KILL it. We are warriors. We are multi-taskers. We dust all the surfaces, and plan full, hearty meals. We can wear white shirts and not spill on them. Unstoppable, unbreakable, we are #flawless. And then there are the days that I choke on air and sneeze while eating Wheaties. If you’ve never done that before just trust me when I say it’s really bad. Like, real bad. So in honor of these moments, I’m going to share with you the recent ways in which I am #flawless and also the ways in which I am just the worst ever.

Flawless:
1. Did laundry completely. Even folded it from the dryer without waiting so long that we run out of clothes and have to get dressed from the dryer the usual length of time.
2. Took Darcy to the grocery store by myself, dealt with 2 meltdowns, and still got everything on my list.
3. Made those homemade doily Valentines with Darcy and did not lose my shit when she kept ripping them, sticking the stickers on the floor, and generally acting like a wild animal. I was serene and good and understanding mom.
4. I went on my first post-partum run! It was absolutely terrible, but I did it and did not die to death like I wanted to. Counting that one as a win.
5. Took Clark to 4 different MD appointments and did not collapse from anxiety. I mean, it was close, but I survived #meds

Worst ever:
1. I’m playing with Darcy, who is in a super fun mood. She has on these pink boots that she is in LOVE with. She constantly wants to put them on and take them off. She sits down, holds her feet out and says, “Off! Off! Off!” I decide to be funny and snatch them off her feet really fast because she thinks that stuff is funny. When I do, I pull her body towards me, she loses her balance, and smacks her head on the tile floor. Hard. I am a jerk.
2. While I’m facebooking on my phone, Darcy jumps on Clark and scratches his face, drawing blood. He still has the scab and I feel terrible because I am that distracted mom who is on the phone while her kid gets murdered in front of her face.
3. Well, this one involves a story…
After Darcy goes to bed, I generally retreat to the bathroom and take a nice long bath where I pretend to have zero responsibilities and google pressing matters like, “How tall was Marie Antoinette’s hair?” It’s a special time, y’all. Ben, however, has been studying like a mofo for his FE exam. This exam is basically his engineering license and enables him to work as an engineering intern when he graduates. Kinda important, and once Darcy goes to bed, Ben pops on his noise-cancelling headphones and hits the books. So, if Clark has needs (so dang needy) while I take my bath, Ben is occupied studying. SO, I nurse Clark to sleep, and I bring him in the rock and play into the bathroom with me. Cue, relaxation. Except Clark (needy booger), is not having it this night. Fussing, fussing, fussing. Totally killing the serene ambience I’m going for. I try to pacify him. He gags on the pacifier like it is 47 inches long and double-dipped in poison. I decide to just pull him into the bath with me because he loves a bath. It works! He’s happy, looking around, tra-la-la. I mean, I have to keep him from drowning, so my googling important things and general relaxing is kaput, but it’s a pretty sweet time. He makes these hilarious faces. Then he turns red. And KABLOOEY! The biggest poo of his life right in the bathwater–the bathwater I’m sitting in, naked. I screech, hit the drain, and quickly stand up with Clark. We have to vacate this warzone immediately. I mean, it’s basically a biohazard. I step out of the bathtub, immediately lose my balance, and slip. I manage to catch myself, but by doing so, I pull a muscle in my groin and apparently I clutch Clark’s belly too tightly. He responds to this assault by vomiting everywhere and screaming. Ugh, this is just the worst. “Ben!! HELP!,” I whisper-scream. Darcy is asleep. I do not want to make this worse by waking the beast. But Clark is already screaming so I join him and yell, “BEN! COME HELP ME NOW!!,” But you see, Ben has those noise-cancelling headphones on. He does not hear me practically drowning in Clark’s various bodily fluids, nor does he hear Clark screaming at his mother’s absolute failure. I wrap Clark in a towel and run out to the table where Ben is working. You should have seen his face. Wife, naked and covered in questionable fluids, thrusting a screaming, towel-wrapped baby into his hands. “Just. Take. Him. I’ll be back in a minute.” To his credit, Ben didn’t say anything at all other than, “Oookay.” I limped away and tried to reclaim my dignity of which is practically nonexistent at this point.

Lort, halp me. Send your angels to watch my kids when I am distracted and facebooking. Allow Clark to control his bowels when we are bathing together. Let me be serene-good-understanding-mom because I like her. Not sneezing-while-chewing-Wheaties-mom. She’s just sad.

So, let me hear it. Tell me about your ‘not funny at the time, but funny later’ stories! It makes me feel better when you are also the worst ever because I am not the bigger person who feels bad for you. I am the person who will laugh at your mistakes and let you laugh at mine. Laughter is everything, y’all. Don’t take everything so seriously. Love to all.

The crushing weight of anxiety

My journey, my story, my kind of crazy

I wake up to hear Clark stirring via the baby monitor. It’s 1:30am. I’ve been asleep 2.5 hours. I get up to nurse him before he starts crying and wakes up Darcy. After nursing him, I go back to my bed, and try to sleep. I am exhausted. I haven’t slept more than 3 hours at a time since he was born 3 weeks ago. But I can’t sleep because what if Darcy heard him? Do I hear her? Is she going to wake up again at 3am crying? Why isn’t he settling down?! Is he going to go back to sleep? Please, God, let him go back to sleep. Do I need to go burp him again? Should I enroll in classes this upcoming semester? Or take a break? OMG! Go to sleep, Beka. Now I only have like 2 hours before he wakes up again, ready to eat! Shut up, brain, shut up!

And I didn’t go back to sleep because these (among other) thoughts are racing through my mind nonstop. Just like the previous night. And the one before that.

In the morning, I check to see if Clark is breathing–constantly. Did I turn off the coffee maker? What are we going to eat tonight? Is Clark still okay? Is Clark going to be okay? Do we have any paper towels? What if Darcy has another ear infection?

I’m easily able to convince myself that I just “have a lot on my mind.” I mean I’m a mother of two children that are under two years old. I’m a grad student that works full-time. I’m just a little stressed, and that’s why I’m having trouble and feeling anxious. Then the other thing with those symptoms happens…the heart racing, palm sweating, stomach dropping, limb paralyzing thing. It’s kind of like the exact moment where you remember that you forgot to do something really important. Except I haven’t forgotten anything, and knowing I haven’t doesn’t stop these feelings. I have exactly zero relief.

Anxiety–postpartum anxiety to be exact–is the worst, and these episodes can occur three or four times an hour lasting anywhere from 2-15 minutes and occur independently of my unrelenting, worrying thoughts. If I’m completely honest, it probably started with all the drama surrounding Clark’s pregnancy, and his birth, combined with the heavy postpartum hormonal shift, made it pretty terrible. Making matters worse, I felt guilty, and I tried to pray my anxiety away. Philippians 4:6 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” But my anxiety wouldn’t dissipate because I was sick. My brain was, anyway. We wouldn’t be expected to pray away diabetes or high blood pressure, would we?

According to americanpregnancy.org, postpartum anxiety affects around 10% of women, but I’m pretty sure it is severely underreported. Why? Because women are scared of judgement. Of being ignored. Or of confirming their worst fear—that they are, in fact, a “bad” mom. Just last week I read this article, where a postpartum woman told her provider she was having persistently violent thoughts she would never act on, but was disturbed by. Yeah, they called the police on her, who escorted her to the ED, treated her like a criminal, and finally released her 10 hours later with a list of phone numbers to call for “help.” Zero support, zero medication, and zero empathy.

No.

Just. No.

That is so far from acceptable that I actually hurt for this woman. I know firsthand how hard it is to get help. You see, I experienced postpartum depression with Darcy. I claimed it was situational depression only because of her surgery, etc. It was hard and dark and affected my initial bonding with her. Thankfully, with meds, love, and support, it quickly abated and I became strong again. Towards the end of my pregnancy with Clark, Ben had mentioned he was worried I might struggle again once the baby was born. So in my favor, I had a husband who was looking out for me. This is important because when you’re bogged down with the weight of depression and/or anxiety, it can be hard to see things for how they actually are. So, when I confessed to him how insanely worried and anxious I felt, and that I didn’t know why, he told me, “Call Dr. B right now. Get help.”

My reaction wasn’t calm. “I’m not crazy, dammit! I’m just…I don’t even know how to explain it.”

“No, Beka, you’re not crazy, but the way you’re feeling IS making you sick. Call her.”

Dodging it, I said, “Well, my appointment is in a couple of weeks, so I’ll talk to her then.” There. That should satisfy him that I’m going to take care of it, and (bonus) will put it off for now. Because I’ll get better by then. Right?

“Call her now,” he insisted.

“But it’s Friday.” Even I knew that was a weak argument.

“Yeah, and her office is open. Call her, Beka. Now.”

“FINE!”

So I did, and I told her nurse, “Look, my anxiety is kinda bad. Ben said I should call…shouldn’t I just monitor it and see if it gets better?” She immediately responded,”No way! It will only get worse if we don’t do anything. We’ll start some meds now and see if we need to adjust the dosage when you come for your appointment.”

The second thing in my favor:  a matter-of-fact, yet compassionate response from my doctor’s office. When I returned to her office 4 weeks later, we decided to increase my dosage AND she gave me a PRN (as needed) script because I told her Clark’s surgery might just push me over to crazy town 😜. The reason I go into all this, and air my “dirty” laundry is because this is a problem. I’m a nurse, I’m educated, and it still took my symptoms, my husband’s urging, and my doctor’s following up to get me on the road to a more therapeutic place. If a link in any of those chains is broken, women will slip through the cracks and take on motherhood with an additional, massive weight on their shoulders.

So, maybe we should talk about this. Maybe we should de-stigmatize these mental health issues that are SO very relevant to our loved ones. We should listen, support, and help those we know are struggling. We need to look out for our friends when they’ve had babies and encourage them to seek help if they need it. If you are struggling, you aren’t alone. It’s going to be okay, mama. You won’t always feel this overwhelmed. Love yourself, give yourself grace, and get some help. Because your children need a happy, healthy mama, and you’re gonna get there. 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 😂

Is Clark Rayner actually Clark Kent? Asking for a friend.

Faith, lab results, and Jesus

Over the last two (plus) weeks, I have been reeling from our appointment with neurology. We were referred for his hypotonia, which literally means “low tone,” which basically means he’s floppier than your average baby. She also told us that she thought he may in fact have a clubfoot, and that we needed to have it ruled out by an orthopedic surgeon. You know, the specialist we were told we didn’t need to see by our OB, pediatrician, an OT, a PT, and 2 neonatologists. On top of the “clubfoot,” we were told he likely has either a mitochondrial disorder or Prader-Willi syndrome. You are welcome to google those, and what you find will not be good. She gave us orders to take to the hospital lab to have these labs drawn. She warned us that she was going out of the country for two weeks AND our results would take up to two weeks to process, SO we could expect not to hear anything until the first of January. Cue the giant sigh. Cue the,” OMG, why the eff am I having to wait again???” Cue the realization that, “Hey…I still have time to change God’s mind. To ask him to intervene…”

Enter the I’m-going-to-pray-like-I-never-have-mindset.

I have been praying day and night over my little Clark. Every time I nursed him. Every time I changed his diaper. Every time I fell in love with his fat cheeks which amounts to at least 1,000,000 times. You see, for months I have prayed for strength. But I changed my prayers to pray directly for healing from Jesus Christ. “Jesus, please heal my baby. Please let it not be Prader-Willi, but if it is—You are going to have to give me strength.” Over and over and over I prayed these words. I wanted to faithfully pray and beg God to heal Clark. If Jesus raised the dead, healed the blind, and walked on water, logically I knew he could change the course of my son’s life. I needed to pray this over my son with complete faith. Oh. And in the spirit of total honesty, I also had huge meltdowns because despite my faith in Jesus (ever faltering) and whatever anyone thinks, I am a completely weak wreck of a woman. I also had moments where I said it was completely fine whatever the outcome. Quickly followed by a meltdown. Which was usually followed by the sweetest text message, phone call, or e-mail. You absolutely know who you are, and Jesus used you to encourage me in times where I let my anxiety and distress overwhelm me.

Back to this week—

Tuesday, I called and left a voicemail with the neurologist’s office asking them to call me and let me know the results of the tests. They called Ben (not me) and said the results were not “in” and that they would need to call the lab where the tests were being run for the status of the results. No return call.

Wednesday, I psycho-dialed their office for 5 hours and left 2 messages, the 2nd of which was the most desperate message yet andddd I had Ben call them, too. I also called the lab directly and asked if the results were “in”—they were. I also asked for the results but they “could not give them.” FINALLY the neurologist’s office called back, and told Ben the results were in! And that they were unauthorized to give us these results. What in the hell?!  You have the damn results and will not give them?! Yep. Can’t because the MD was, “not in the office today.” 😡🤬

I. Nearly. Died. Of. WTH-ness. Cue major meltdown. Like meltdown so hard I ended up with migraine that incapacitated me for the remainder of the day.

A few minutes before 8:00a.m. today, Ben called me and told me that the neurologist’s nurse called him and said the tests were negative! He does not have a mitochondrial disorders or Prader-Willi syndrome.

Let’s recap. Prenatal: His genetic screening for trisomies and sex chromosome disorders was normal. Postnatal: His MRI of his spine was normal. His MRI of his brain was kinda normal. His cardiologist says he’s fine. His orthopedic surgeon says he doesn’t have a clubfoot. His genetic testing came back normal. His metabolic testing is normal. Specific testing for PWS and mitochondrial disorders is negative.

Jesus. Jesus. Jesus.

I can tell you right now that I am a doubting sinner with faltering and imperfect faith. But I can also tell you that God is healing my baby. Not all at once, and not in the quick and perfect way that I would like, but in His time and in His way. I probably don’t have to tell you, but deep down I have always been of the belief that God’s will is absolute and unchanging. That prayer is a platitude that makes us feel better, but ultimately changes nothing because the outcome has been decided by God. And God has taken this opportunity to show me that prayer can change everything, and I thought you should know that, too. And also that my baby son is like Superman. Love to all.