Tag: craniosynostosis

Riding that Struggle bus

Last night I dreamed that Clark had to have a re-do craniosynostosis repair surgery.  I remember not being exactly sure why he had to have another surgery, just that it was going to be an open repair involving a craniotomy (removal of top portion of skull). Isn’t it strange how strongly you feel emotions while dreaming? I was terrified and angry. “Haven’t we been through enough? Haven’t I served my time with craniosynostosis, two times over?!”

I woke up with a start. Clark is not having another surgery. Today IS Clark’s cranioversary–the 2nd anniversary of his craniosynostosis surgery. Maybe that’s what brought on the dream/nightmare. But, maybe not. You see, our lives are finally “calmer.” Ben is no longer commuting to Thibodaux or New Orleans. He has a job in Baton Rouge with better hours, etc. Darcy and Clark are well and without major health struggles. I’m finished with school, and I’m picking up shifts while working PRN in the CICU while looking for a job as a nurse practitioner. And there it is. The source of most of my stress. Job. Hunting.

You see, despite the shittiest of circumstances, I did really well in grad school and ended up with a 3.85 GPA and honors. I passed boards within a month of graduation on the first try, and I even had an interview within that first month window. Then…nothing. I’ve lost count of job applications and reaching out to my “contacts” with no real result. It has 100% totally sucked, and this past Monday I had a real come apart over it. “What the hell, God? Why have you brought me this far for nothing?” I mean, my student loan payments will be knocking on the door soon, and I feel like I’ll still be working PRN on the unit instead of working as a nurse practitioner. It has been incredibly disappointing.

In the grand scheme of things, I realize that this is not a great tragedy. My children are healthy. My husband has a really great job. Hell, I still have a job. One where I make my own schedule, work with my favorite dysfunctional coworkers,  and earn decent money. But, it’s not enough is it? We always want more, feel entitled to more. I don’t know if any of you are similar, but I often find myself reaching for the future and gambling away my present which is a frustrating and self-destructive way to live. I know this, and yet I do it over and over again. And yes, I know that a job will “come along” as so many people are quick to tell me,  I just truly hope that it comes along sooner rather than later before I go completely crazy.

In the mean time, I am deep cleaning my house,trashing, I mean…organizing the kid’s toys (I’m looking at you, useless, plastic party favors), running/exercising, and cooking all the things to undo my exercising. All that nervous energy has to go somewhere, right? Clark is crawling everywhere, trying to pull up on everything, getting into everything, and throwing temper tantrums like a typical 2 year old. He has also become quite the biter when he’s pissed off or excited–two emotions he cycles between with great regularity. He looks so sweet and cuddly, but you are absolutely risking your shoulder flesh if you give yourself over to his snuggles. Don’t say I didn’t warn you. Darcy is so…much. I mean, she’s a lot. A LOT. She is so precious, and so funny, and so sweet, and so argumentative, and so frustrating, and so challenging. It’s intense. In the cover photo of this blog post, you’ll see a barefoot Darcy. This was her class picture (a picture of a picture-hence the quality), and I am at least 75% certain that I sent her to school wearing shoes, but whenever I ask “Darcy, why aren’t you wearing shoes in this picture?” she says, ” I’m not.” So there you go 🤷🏼‍♀️ She is currently obsessed with rainbows and princesses, despises bugs,  and is a stereotypical little girl. She also says that she wants to marry Ben when she gets older and “live with mommy and daddy forever!” I know, it’s unbearably sweet. I’ll remind her of this when she turns sixteen and we become the biggest idiots she’s ever known.

In conclusion, I feel God telling me to be patient. He’s not in a hurry, I am. And I just need to slow down and enjoy the time I’ve been given because I’m not guaranteed anything more than the present. We should all remember that. So, I’m going to catch up on Netflix shows and try out fun recipes, and go to the lake with my family. I’m going to pray more and worry less. Also I’m going to order a king cake from Thee Heavenly Donut. No, I did not misspell that, so quit with your judging.

That’s all for now. Eat some king cake because Ash Wednesday is in one week and Ash Wednesday=No mo king cake 😦  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!

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 dysfunction is conductive and NOT sensorineural. For nonmedical people, this means his ears/hearing are probably fine, but they’re plugged with fluid resulting in hearing loss. 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.

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 😂

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