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’d 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 this feeling. 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, 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.


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.”


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.

Even if the healing doesn’t come

Since I last posted, we have gone to the neurologist who absolutely believes Clark has a neurological diagnosis. Actually, that was one of the first things she said. She then told us his genetic screening came bank normal 🙌🏻 BUT that it didn’t test for everything. And she had some very specific syndromes she wanted to test for. And the results from those tests won’t be back for–you guessed it–at least 2 weeks which puts it during the first week of January. She also told us that the MRI we were so excited about wasn’t normal “per se” and would require follow up for years. Ouch. Ouch. Ouch.

What does any of this mean? Believe me, I’ve been shaking on the gates of heaven asking for answers day in and day out (I don’t get a lot of sleep with a newborn). And I still don’t know what’s going to happen. It’s basically just more uncertainty, and when I first found out, I didn’t think I could take anymore. I haven’t even had the courage to update my blog. Maybe because I felt ashamed in previously proclaiming Clark’s having been healed only to be told “No. probably not.” Maybe I didn’t want to bargain with God anymore. There’s no sense in that, anyway. But I’ve had some time to digest the information, and I’ve come to several conclusions.

First of all, it’s not about me.

As much as I write about my thoughts and feelings, it’s really not about me. As much as the most selfish part of me wants to proclaim, “Why me?! This isn’t what I deserve. I’ve had my struggles, I’ve served my time!,” my whole purpose in this life isn’t to “get what I deserve.” It is to bring glory to Jesus. If I can accomplish even a fraction of that through this journey, then it will be worth it. Hard. But worth it.

I keep thinking about how this scenario has dragged on and on. No answers. Bad news. No answers. Worse news. Better news? Nope. Bad news again. And I’ve found myself holding my breath, clenching my jaw, crying alone in the bathtub just wondering when it will all end, so that I can be happy again. Today I had a small revelation–what if the point isn’t to grit my teeth and just survive? I mean, I have been. I’ve soldiered on, and kept living, kept working, kept schooling, kept momming, kept going. But what if that isn’t the point? What if it’s not how much I can take and survive, but how much I can take while I thrive? While I actively and intentionally choose joy? While I look at my son with awe and wonder instead of fear or anxiety because, “it shouldn’t be this way?”

This Christmas, I’ve been especially thankful for a different baby boy. The one who is King, who is Sovereign. The baby who freely gives forgiveness, healing, and hope of a life everlasting. I’ve kind of always wondered if He was still all that great when your life takes some craptastic turns. I can tell you in my experience He is. He is unchanged by our changing circumstances and attitudes. He is always good.

I still pray for healing over Clark, (oh do I), but I know that it may not be what God has chosen for his life. The importance of His plans outweigh mine and make Him no less good.

17 “If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O King. 18 But even if he does not, we want you to know, O King, that we will not serve your gods or worship the image of gold you have set up.” Daniel 3:17-18

Even if God doesn’t heal Clark, and the tests for syndrome(s) come back positive, and he has struggles all of his life, Jesus isn’t any less good.

So in light of all this news, which is disappointing in so many ways, I want you to know that I’m choosing joy. I’m choosing Christ because He’s all that makes sense in our ever-changing and uncertain journey. I’m choosing the joy of late night snuggles, and the refusal to constantly google syndromes. I’m choosing to rejoice in my endless blessings. I’m choosing to believe that God will equip me to handle whatever comes our way. And I want you to as well.

“Through it all, through it all, my eyes are on You, and it is well with me.” -Bethel Music

Clark’s story: Part II

Help from above that I don’t deserve

*Shelby was my nurse that night. She came in and introduced herself and told me that her plan for me was to remove my catheter somewhere around 10:00pm, which was roughly 12 hours after my surgery. At that point they would get me into a wheelchair, and I could go to the NICU to see Clark. I would keep the pain pump overnight. The cardiologist had completed an echo on Clark and said that everything looked pretty normal. Mild variation and they would follow it. My mom, sister, dad, and Ben were in the room with me when the neonatologist that was present at Clark’s birth came into the room. She said that they had done some preliminary testing per MFM suggestions and that genetic testing had been sent off and that x-rays of his head, neck and abdomen had been done. The x-ray of his head showed a cyst in his brain. The x-ray of his spine showed flattened, deformed vertebrae and the x-ray of his chest showed significant rib abnormalities on the right side of his chest with flattening of the rib bones.

There was no moment of shock for me–I cried immediately. My nurse walked in, saw what was happening and left. The doctor asked if I was okay. I just nodded. No, I wasn’t, but that should be obvious. I was distraught. I managed to ask her what we needed to do next. She said they would be doing an MRI of brain and spine the following day. That was it–news having been delivered, she left.  My sister and parents left, too. They were going to stop at the NICU to see and probably pray over Clark. I think they were too upset to say much. In walks Shelby with a wheelchair and a nursing assistant. “You just had major surgery, so you can’t stay for too long– you’ll hurt yourself, but you’re going to see your baby, now. Hold on, let me grab your medicines real quick.” While she was gone, I gingerly swung my legs over the side of the bed, stood up (ouch), and hobbled into the wheelchair. At that point, I think I would have crawled to the NICU if I’d had to. She walked back in, looked at me, and laughed and said “Well, let’s go.” She didn’t have to do this, and she was taking me about 3 hours early. So, off we went to the NICU, and I cried as they wheeled me in.

He was in this tiny isolet, naked save a diaper, and he was beautiful. They told me he was only on 1L of 02 and was doing really well. They figured because he’d been in so much fluid, and was delivered via c-section that he was unable to breathe well right after birth. It was quickly resolving though. He had a rib deformity–pectus excavatum. You can google pictures of this. It’s basically a sunken-in chest. Not all that rare or abnormal and rarely causes any other issues. They did not think it was causing his initial respiratory issues. Again, I asked if I could nurse him—no. They then took me through their orientation, and I hit the dilaudid button on my PCA pump like 83,492 times because they were explaining what a pulse ox was when all I wanted to do was touch my baby, cry, and tell them to shut up. Ben tried to explain that I had been an ICU nurse for over 2 years, so she nodded and tried to explain his heart rate monitor to me 🙄. Honestly, I know it’s their job, but I really wanted them to shut up and go away because I had just received bad news and wanted to process it without their explanation on germ theory and the importance of washing your hands. Under Shelby’s orders, I left a few minutes later.

That night was spent sleeping and waking up again fuzzy-headed and confused. It was a long night. I was pumping every 2 hours or so and drinking liters worth of water because I was so thirsty. Ben and Shelby poured up colostrum and half-carried me to the bathroom on a regular basis. I was so sore and my heart was hurting and I just prayed a lot. I couldn’t understand what I was supposed to be doing. Should I give up? Should I pray that God brings us through this? Should I just accept that Clark is very compromised and will likely suffer a lot?  I didn’t really know, so I just prayed for peace and comfort and healing for Clark. “Please give peace and comfort and healing for Clark.” I said this over and over and over again when I would wake up because it was the only prayer I had left.

The next morning I begged Shelby to come back that following night while she unhooked my IV dilaudid and loaded me with Percocet. I got up and took a shower. It hurt like hell, but I didn’t want to stay in the bed any longer, and I felt like I needed to get ready to deal with whatever the day was going to bring. I ate breakfast and got into the wheelchair to go to the NICU. When we got there they told us he was off oxygen and had been all night, and that he was doing well. I asked if he was peeing/pooping and she said, “Oh, yeah.” All very good news, and I was so happy. I asked if I could hold him and she said yes. It was a precious moment. Then a physical therapist walked in to assess his foot.  She said it was absolutely not clubfoot. His foot was positional and would need to be massaged, but was not going to require clubfoot therapy. Our OB and neonatologist told us they didn’t think it was a clubfoot, but after all the bad news it was really hard to believe that something could be okay. Hearing a third person confirm this and explain why it wasn’t a clubfoot was helpful and made it more real and believable to us. The nurse said I could try nursing him, but that he may not latch. She got a lactation counselor from the NICU to help me and observe for any issues. I snuggled him up and he latched immediately. Ate for 25-30 minutes. Another answered prayer. Because he did so well and I was a STM with breastfeeding the doctor agreed to remove the IV fluids. He was now off O2, off IV fluids, peeing/pooping, and eating. He looked so beautiful and I was just ready to get his MRI over with. We left to go eat lunch in my room,  and when we came back they let Ben hold him and bathe him. Then they took him to MRI which was supposed to take “an hour.” It took two and a half. So I got back down to the NICU and nursed him quickly. I told Ben he was getting out of the NICU now. They had no reason to keep him. The nurse tried to argue saying that he needed to be “observed,” and I shut that shit down quickly. “He’s eating, and off 02. What are y’all doing for him here besides letting me accumulate a huge bill?” She left and got the NICU doctor who was a new face. He said the results of the MRI were back and they were normal. NORMAL.

Let that sink in.

The MRI of his brain was normal. No brain cyst. No skull abnormality. No hydrocephalus. No evidence of craniosynostosis. There was some fluid around the brain, but very minimal and considered normal for c-section baby. The MRI of his spine was normal. No compression, or misshapen vertebrae. The MRI was not of his ribs so they still look “off,” but are causing no distress. I cannot even begin to tell you how many times I asked, “But what about the xray? Could it have been so wrong.” The neonatologist had no answers, but said that the MRI was conclusive and the brain and spine looked fine.

“But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.” Isaiah 53:5

 I then told the neonatologist we would like him back in our room now. After much discussion he finally had to agree there was not anything wrong with him, so he reluctantly agreed to let Clark leave the NICU with us. The very same neonatologist visited us the following morning and wanted us to follow up with neurology on Friday for “completeness.” Whatever, man.

I still don’t have the words to say what’s in my head. It’s not even a discussion that I hate MFM. They have used ultrasound imaging every month since August and told us that Clark will have major issues forever. They have said that I was unable to have this baby in any other way than a c-section. They said he had a definite clubfoot. They said he had ventriculomegaly significant for shunt consideration (at my final appointment) and most likely craniosynostosis. And none of it has been proven true. Are they really that incompetent? Are they complete idiots?

I cried in my room to my mom on Thursday. It was a day after his dismissal from the NICU and I was so upset about how everything had gone and the constant stress for months and months. I said out loud, ”Actually, maybe they did see all of that. I think God just decided to heal my baby.” Immediately, I felt sudden peace. The god-given kind. Giving voice to those words confirmed them. I know now without a shadow of a doubt that God DID heal my baby. I don’t know why. I know I certainly don’t deserve it, but I want you to know that He did it anyway.

I’ve been vocal about my disbelief that Clark would be healed. I just haven’t been able to drum up much faith about it. But over the last week especially I have just prayed that God would heal my baby–God please heal my baby.

Matthew 21:21-22 “Jesus replied, ‘I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, ‘Go throw yourself into the sea’ and it will be done. If you believe, you will receive whatever you ask for in prayer.”

Now, we’re not completely out of the woods yet. Clark has pectus excavatum which ironically is the birth defect he DOES have that MFM didn’t find. Weird. And it can be sign of chromosomal abnormality. And the genetics tests aren’t back yet. And he has been referred to neurology because he has hypotonia (meaning he’s pretty floppy). So we aren’t out of the woods completely, but I have been made aware again–God is ever-present and he listens to our cries for help. He hears us. He cares. For every person who has raised a prayer on Clark’s behalf–thank you. From the bottom of my heart, thank you. Please keep praying because God is listening.

“’If you can?’ said Jesus. ‘Everything is possible for him who believes.’” Mark 9:23

So please. Keep praying with me. Believe with me. Love to all ❤️

Clark’s story: Part I Getting Clark here

The lead-up and birth of baby Clark

First of all, bear with me. The past two weeks have been so full of ups and downs and misinformation and miscommunication and miracles and curveballs.  I will attempt to give a shortened version that still allows for complete understanding. You could also totally decide not to read my blog, so there’s that option as well. Exercise your rights, people. Anyway…

I cannot believe it has been almost 2 weeks ago when I met with my OB for my 36 week check up. At that check-up she mentioned that we could validate inducing me the following week at 37 weeks due to my fluid levels if they continued to be very elevated. I asked her what was considered “very elevated,” and she said usually an amniotic fluid index of at least 28cm. The previous week, my levels had only been 24cm, which meant that although I was more comfortable and not having as much difficulty breathing, it also meant that I could not qualify for early induction. And I was done with this pregnancy:  so much stress, so little relief. If we induced at 37 weeks, my OB didn’t see the need for a c-section.

At the MFM appointment that afternoon my levels were 29cm. I felt relieved. This baby would be here the following week. The MFM doctor measured the head circumference and said it was too large to “reasonably” consider a vaginal delivery. He said that he would talk to my OB about this in his report. He said that he couldn’t find much information on possible syndromes because Clark didn’t meet enough criteria to clearly fall in line with any particular syndrome. He reiterated that his head shape was very odd and large and that the mild ventriculomegaly may require a shunt shortly after birth. You know, all the warm fuzzy stuff that has endeared MFM to me so much. 🙄

The following morning a physician from the MFM clinic called and said that he needed to connect me to a social worker to tour the NICU. I asked why and he said that with Clark’s medical needs “he will never qualify for the ‘regular nursery, and we offer the tour to make the NICU seem less scary.” He said that I would be able to see Clark probably 12 hours after my c-section delivery, but that I would only see him for short time immediately following birth, and that I wouldn’t be permitted to hold him due to the cold temps in the OR. I lost it. We had not decided for sure on a c-section, none of Clark’s imaging indicated a direct admit to NICU, and being told I couldn’t hold my baby for almost a whole day devastated me. After frantically calling my OB and my husband and playing phone tag all day, it was decided I would have a scheduled c-section the following week, and that Clark would only go to the NICU if he was unstable and not “just for monitoring.”

The following Tuesday, December 5th, we were admitted for the c-section. My nurse told me that the NICU staff would be present because he was probably getting admitted. I asked why and she gave me stupid MFM’s line of “with his diagnosis blah blah blah,” and “for observation.” Done. I decided right then and there that if I wanted to control anything with this birth and Clark’s care that I was going to have to be a bitch. I told them under no circumstances would he be admitted unless he was compromised, and that if they thought they could admit him for “observation,” I would make their jobs extremely difficult for them. The nurse left in a hurry, and I called my OB’s office. She happened to drop by 3 minutes later, and we discussed it again. Again she said he would not go unless there were issues.

Right before my c-section, they bolused me with fluid to combat low blood pressures from the epidural. Unfortunately, it didn’t work, the epidural hit too high, I felt like I couldn’t breathe, had a panic attack, and almost lost consciousness. My lungs felt as if they were squished to nothing, I could not oxygenate, and I was losing it. I told them I needed to sit up right now, and they said I couldn’t– that I was too numb and the epidural had hit a little too high. SO, I grabbed the edges of the table and sat halfway up before they freaked out , held me down, and rapidly began bolusing me with more fluid. “You can’t sit up! Your pressure is really low, that’s why you feel short of breath. You’re actually breathing ok, your sats are fine, Beka.” “How low?! I cannot breathe, it feels like an elephant is sitting on my lungs. I can’t breathe. I can’t breathe!” “It’s not reading, yet. We’re fixing it.” Cold rags were put all over my face and slowly the pressure on my lungs eased. “Wait, we have a pressure, finally. It’s about 70/30. It’s coming up.” I apologized for freaking out like a basic bitch, and they said I actually turned green so they knew it was a legit pressure issue. They also said they had never seen someone actually able to fight epidural-induced paralysis and sit up. Fight or flight, people. I was fighting AND flighting. Crisis was averted, screen went up, and Ben came into the room. I told him I almost died, and we laughed like idiots because life is weird. About 3 minutes later, Clark was born and I heard my doctor say, “She totally could have had this baby vaginally…his foot doesn’t look too bad.” I heard nothing. No crying–nothing. I asked why he wasn’t crying and my doctor kept saying everything was fine. He began to cry and was taken into the next door assessment room. My doc said he was in a ton of fluid. I told them they better measure all my fluid and be very impressed with it because it had been so terrible to deal with throughout this pregnancy. Final total was about 2800ml of free fluid not to count the lap pads and towels used as well. Normal levels are between 800-1000mls. I’m an overachiever. As soon as they closed me up, they took me to that next door room to see baby. The NICU doctor said his APGAR was 7 and 7 and he required a little oxygen, so he needed to go the NICU. Damnit. Oh well. What was I going to do? Anyway she also said she didn’t think his head looked weird at all, and didn’t think he had a clubfoot either. More on that later.

I was able to hold him for a few minutes, and then they took me to recovery where I was given 50mcg Fentanyl to hold me over until my Dilaudid pump was hooked up. Here’s where the real shit happened. There were issues “with pharmacy” and “with finding a pump.” It took over an hour for my pump to be set up. My spinal had been reversed (I had full use and strength of my legs), and I had no pain meds during this time. It was agony. I could feel my the full range of my incision burning, and it was excruciating. It took about 2-3 hours to catch up to my pain before I felt more normal again. If I hadn’t been in such pain, I would have killed everyone in my immediate vicinity. Count yourselves lucky, bitches.

Finally get moved to mother/baby unit and I send Ben to be with Clark. I was told I would be able to see him late that evening, but that he would have to stay overnight. I asked if he was able to eat anything. “No. We’re giving him fluids though.” Probably protocol, but I went back to my room and demanded a breast pump. I had previously asked for one about 3 times and everyone kept forgetting to bring it, or were “looking into it.” I’m telling you, at this point I was back in bitch-mode. I told them if they unhooked my IV, I would just walk home to get my pump since it would probably be faster. Son of gun, I had one delivered to my room 5 minutes later. Go figure. And then, because it was shift-change, God granted me the sweetest nurse. Because he knew I was going to need her.

Nesting, Eye-gouging, and getting ready for Clark

Today is my official first day of maternity leave, and I do not hate it even a little bit. With Darcy, I was put on modified bed rest at 33 weeks because I had issues with pre-term labor. She’s always been very patient, you see 🙄. This pregnancy, despite the drama, constant contractions, and general inability to breathe, I was able to work right up until Clark gets here! My last day was Friday, and the precious teachers and staff at my little school threw me the sweetest baby shower. It was perfect and brought some of the cutest dump-truck onesies into my life. I have been so blessed by this job y’all. School nursing is the very best ever, and I love it with all of my heart.

I am absolutely not kidding when I say that this whole nesting thing has been insanity for me. I don’t remember getting it with Darcy that much, but that may have been because my activity was so restricted. This go-round I have been in full-blown psycho-pregnant-lady mode. God bless Ben, because he cannot seem to understand the urgency of the past month and a half-ish. I NEED the kitchen cabinets cleaned out now. The utility closet organized NOW. I need that crap to be put in the attic as. we. speak. He fusses at me saying, “I’ll help you in a minute.” In a minute? WE DON’T HAVE MINUTES! I NEEDED IT DONE FIVE YEARS AGO! I CAN ONLY COMPROMISE IF IT IS DONE AS I AM FREAKING OUT THIS VERY INSTANT! I am not even exaggerating. Every weekend I have been completing projects all day long. As a result, the house is organized-ish, hospital bags have been packed and repacked, the house is decorated, Christmas presents are bought and wrapped, postpartum stuff is ready, baby Clark stuff is ready, freezer meals are prepared, groceries have been bought, the house is stocked on householdy things for the foreseeable future, laundry is done, and everyone is sleeping on clean sheets. And I’ve only been off work since Friday. So, there. I am #goals because of that nesting hormone. I am so sad to see it go because I’ve honestly never been so productive in my entire life.

This weekend was our last weekend as a family of 3 (4 if you include Libby), and we soaked it up! Darcy is at such a fun and exhausting age. She wakes up singing in her room, and she is SO excited to see mama and dada and read books and watch baby bums and pet Libby and turn on the Christmas tree and eat waffles and everything else all within 10 seconds of us coming to get her from her room. She has added about 50 words to her vocabulary over the last month. I swear she remembers everything and I have to be careful dropping those *special* four-letter words that are so appropriate for 80% of my misfortunes. Darcy loves to pull up my shirt and poke my belly button because she thinks it’s hilarious. She calls it a “buh-buh,” and laughs like it’s the most hysterical thing on the planet. She now pets my belly and says “baybay,” but she also pets my boobs and says “baybay,” so I’m not ready to call her a genius quite yet. She gives the best hugs and kisses, but she will also look you in the eye after a kiss, slap the hell out of you and laugh. Kids are inherently evil, people. Not going to lie, I’m a little worried about poor baby Clark. Darcy loves to point out body parts, and Ben and I both consider ourselves lucky that we still have our vision from Darcy enthusiastically gouging ahem, pointing out our eyes. We may need baby safety goggles for little brother.

Certain injuries aside, I am so excited to watch them grow up together. Anyone who knows me, knows about my big brother. I love him to death and he’s one of my favorite people on the planet. Doesn’t mean that he didn’t send me to pediatric plastic surgeon at age 5 after a particular plastic sword incident 😒, or that I didn’t hate him and plan his death at least 15 hours out of the day while we were growing up. But, thankfully, he is still here (alive), and he is my biggest fan and probably the only person who is my equal in hilariousness. Fact: I nearly wet my pants from laughing anytime we are together. Cabub, I love you so big. I hope that Darcy and Clark share the same bond minus the plastic surgery incident.

Oh Clark-man, we get to meet you this week. I am as nervous as a long-tailed cat in room full of rocking chairs. I’m scared of meeting you at the same time that I’m really excited to meet you. You are so loved already and your mama has been nuts over getting things ready for you. You are getting here a little earlier than anticipated, but that’s wonderful too. You’ll be here in time for all the Chrismukkah festivities, and we are happy we get to hold you sooner. I pray that you’ll be healthy and avoid the NICU. I pray that you will be strong for whatever days lay ahead. I pray that you’ll be forgiving of the eye-poking big sister you are blessed with. And mostly, I pray for grace as Ben and I enter this new phase of having child(ren) in our lives. We will update once baby Clark gets here. Love to all.