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.

A heart attack is NOT an emergency, people!

Or at least one hospital doesn’t seem to think so

My father is one of the most loyal men in the world–to a fault. He is moral, he is humble, and he wants to be cooperative, especially in medical situations. These characteristics I admire so much about him–except when he is a patient. You see my father has heart disease. He has had multiple heart caths, one heart attack, and multiple issues with the stents in his coronary arteries. My dad modifies his diet, works out daily, takes so many cardiac medications, yet his genetics are just crappy. It’s sad really. But worse than that, he trusts incompetent physicians. He is loyal, remember? And he doesn’t want to rock the boat, so when he goes to the emergency room at a particularly *awesome* hospital in Southaven, Mississippi, and they fail to provide even minimal care, he goes back, again and again. So, it’s partially his fault. The fact that the care is absolutely abysmal is not his fault.

I won’t go into past experiences at that hospital too much except to say that on one admission, the one in which he had his heart attack,  they made him wait 4 hours to get his heart cath because they are *so* awesome. WTF.

Well, tonight my dad experienced chest pain and shortness of breath. He feels like his stents must be failing and is probably right (he is very attune to his body) and returned to this craptastic hospital against my wishes because they clearly want to kill him. He arrived a little after 4pm.  They triaged him immediately, got an EKG, and asked if he’d had a dose of aspirin. He said he’d had his scheduled 81mg the previous evening. Then nothing. NOTHING.  A doctor came by, explained that they were very “backed up”, and that they would get to him eventually.  Two hours later, my dad had not seen anyone, and was experiencing increased chest pain and shortness of breath.  A nurse could not be found.  Finally, a nurse arrived and attempted to try and give my dad Aspirin–the first medication offered since his arrival–but the order had still not been put in by the doctor.  At this point my mother gave my father the aspirin from his home meds.  When the nurse finally returned, she was relieved because the aspirin order had still not been put in.  His EKG was now showing arrhythmias, but no worries, there was zero alarm on the parts of the medical staff.  Eventually, the MD arrived to review my father’s medical history and examine him.  When my mother started explaining that the details of a past admission had been documented incorrectly because my father had not been seen in an appropriate time frame similarly to this admission, the physician then said, “You know what, you are being very hostile,” said “I’m going to leave, and when I come back we can try this again,” and left the room without examining my father, who was still having chest tightness and shortness of breath.

At this point, I could no longer accept the incompetence of these medical “professionals” and called the hospital to speak to the house supervisor. I informed her that the “hostile” conversation had been recorded, and that I was concerned that the hospital had not come close to meeting core standards for chest pain. For those of you who do not understand what core measures are, they are national healthcare standards. They are not optional. They are are across the board standards and procedures you MUST follow to be in compliance with national standards. The supervisor stated that she would immediately look into it and called me back and informed me that the nurse had documented that the physician had seen them within 12 minutes of arrival (lie) and that he had been offered aspirin within 20 minutes of arrival but my mother had already given it…

Wut?

I informed the supervisor that it was truly unfortunate that the nurse had chosen to document fraudulent information as my family also had documentation as to the actual sequence of events as well as recordings of my mother being “hostile.” Yeah, Mavis is super hostile when she never raised her voice. While I was on the phone, the doctor threatened to call security. I almost wish they would have. You see, we aren’t crazy. My father is a dentist–an excellent dentist. He’s in line to be the president of the Mississippi Dental Association, and he’s the past president of the Mississippi Board of Dentistry. Not too shabby. My mother is an RN. My sister is an MD, I am an RN. We are not redneck, ignorant, or white trash. We are educated and fluent in hospital protocol, core measures, correct documentation as well as the responsibility of healthcare providers.

The physician returned to the room and said snidely, “Let’s try this again, huh?” And then proceeded to examine my father. This is four hours after his arrival for chest pain. FOUR FREAKING HOURS on a patient with a significant cardiac history and this physician begins his initial assessment of my father. And had the nerve to give a sarcastic, “Thank you,  ladies,” to my mother and sister when he glided out of the room.

So what if my family were not persistent? What if my family were uneducated? Would he have simply been ignored until he died? I bet, and I honestly bet that’s what happens to so many patients who walk into this ER and deal with this MD. So, here’s my advice to the people of North Mississippi:

  1. Do not go to a hospital in North Mississippi when you can jet up to Memphis and meet a competent ER physician.
  2.  Do not allow your family member to be ignored when they are having chest pain.
  3. Do not be afraid to rock the boat. People die when they are compliant to just get along. You MUST fight for your loved ones. Check out this statistic:
    • According to an NPR article, “Now comes a study in the current issue of the Journal of Patient Safety that says the numbers may be much higher — between 210,000 and 440,000 patients each year who go to the hospital for care suffer some type of preventable harm that contributes to their death.”
  4. Realize that not all physicians and nurses are created the same. Some barely scraped by in school and are actually not that smart. Even more are egomaniacs and will try to threaten you into submission.
  5. Document, document, document. Sure, it makes the healthcare team nervous, but you need to keep notes of what is going on and what your loved one is being given
  6. If all else fails, go and loiter at/around the nurses’ station. Nurses hate that and will literally do anything to make you go away #realtalk

People die when nurses and physicians do not do their job. Ask questions. Record interactions, demand answers. Doing so could save lives. Failure to do so, could lead to death. A nurse manager who has now seen my mother said that once a patient says they’ve had aspirin in the past 24 hours that you don’t give anymore. When my mom questioned that, she admitted that, “Well the nurse probably just didn’t know cardiac protocol and should have given aspirin immediately. We can use this as a learning opportunity!” Umm, no. Just…no.

My father is kind, compliant, and loyal to a fault. And tonight he was treated with scorn and derision by an egomaniac who is incompetent to care for even a beetle. And unfortunately for him and that particular establishment, I am a determined individual and choose to blast them on my blog. Which I never do, but as a nurse, it is my responsibility to protect patients. This MD has not heard the last from my family. I feel certain he will regret his cavalier, unprofessional, and ultimately neglectful attitude.

My blog is usually so uplifting (I hope), but tonight, I feel like I need to tell people a hard truth: If you go to the hospital, you are increasing your chance of death. If you don’t question the actions of healthcare providers, you are further increasing your chances. This is coming from a nurse. Love to all. ❤

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 ❤

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.