The 2nd anniversary of my motherhood

Or, Darcy’s birthday letter

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

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

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

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

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

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

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

Slipping through my fingers all the time,

I try to capture every minute,

The feeling in it

Slipping through my fingers all the time.

Do I really see what’s in her mind?

Each time I think I’m close to knowing,

She keeps on growing

Slipping through my fingers all the time.

Sometimes I wish that I could freeze the picture,

And save it from the funny tricks of time,

Slipping through my fingers all the time.

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

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

Broken for a purpose

Welcome back, Beka

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


Pediatrician: 8

CT scan: 1

Craniofacial surgeon: 2

Neurosurgeon: 1

Neurologist: 1

Cardiologist: 1

Orthopedic surgeon: 2

ENT: 1

Pre-op anesthesia: 1

Additional labwork: 4

Hearing screen: 1

ABR testing: 1

Helmet fitting: 1

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

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

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

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

Coffee, neurosurgery, and the ability to hear

My second go-round with craniosynostosis

I didn’t prepare much.

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

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


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 ❤

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 😂

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.

My awesome mom, my dead fridge, and Darcy’s book pillow

My mom is better than yours. She just is, and she drove 5 hours to save the day last weekend because her name is Mavis and that is how she works. You see, Ben left the country because he’s not pregnant and still maintains a fun lifestyle. I, however, am something akin to a beached whale, who has contractions if I sneeze, lift a pillow, or roll over in bed. Lifting and chasing after Darcy full-time could seriously send me into pre-term labor (again), so my mom drove 5 hours and stayed with me to help. She cleaned my house, did my laundry, cooked, shopped, and took care of Darcy all while I planted my fat ass on the couch and watched new episodes of “Call the Midwife.” It was glorious, and if you haven’t watched that show, you are totally missing out. I hope I’m half the woman my mother is one day. Seriously that short, little woman can accomplish anything in small timeframes AND do it better than anyone else could. Also, while Ben was gone (side-eye to Ben), Darcy decided to cut 4 teeth at once, and our refrigerator died. Like dead, died. Luckily my in-laws quickly got us a new fridge. In the meantime, Ben’s twin brought us his mini-fridge, and Ben’s younger brother brought us food. So, even though Ben was all la-ti-da “I’m going cliff-diving and climbing volcanoes,” while the world fell apart (exaggeration, but have you HEARD my daughter whine while teething?!), his family stepped in with greatly appreciated replacement fridges and Newk’s pizzas. That Mavis, though? She’s the real MVP for life. Darcy agrees and is in love with her. She’s known as Mattie by all of her grandchildren, except Darcy. Darcy calls her Mammy and cried whenever “Mammy” left the room. Last night she saw one of my mother’s diet cokes in the fridge, snatched it, and ran for the front door screaming for “Mammy!” It was cute, but Darcy was pretty disappointed when the Diet coke didn’t work like a genie lamp and produce her doting Mammy.

Anyway, Ben returned from his Central American adventures, my mom went home 😢, and this past weekend we transitioned Darcy to her big-girl IKEA bed (see previous post) and moved the crib into baby Clark’s new room. Darcy is doing fairly well-ish with going to sleep, but has been waking up at around 5:30am on the nose, screaming. It’s not very cool, but at least she’s sleeping through the night in her bed. Sunday morning, Ben crawled into her little bed with her when she freaked out, and we all got another 1.5 hours of sleep. Success! So, it’s not perfect, but we’re working on it. For instance, tonight she decided to act crazy and keep climbing out of bed while screaming hysterically. So, we let her scream (I’m a member of the cry-it-out-within-reason camp. Not sorry) for about 5 minutes and wander around in her dark bedroom. After 5 minutes, silence. We go and check on her and she’s fallen asleep face-first on her books on the floor. It was hilarious and kind of tragic at the same time. But, because we are not stupid, we let her continue sleep on her books for another 15 minutes, so she would be in a deeper sleep for the transfer back to her bed. It worked like a charm, so judge away if you so feel inclined.

Andddd, we had another depressing doctor’s appointment today. I’m not even going to share details on it right now because I’m already sad enough, and I don’t feel up to rehashing the particulars. Over the last couple of weeks, I’ve felt better about Clark’s situation. I feel hopeful that he’s going to be okay and that the “potential issues” could be nothing and that everything will be fine and he will be healed. I want to chalk it up to having faith, but in all actuality, it’s probably just a heaping dose of denial. After I recover from an appointment, I blissfully live in my growing faith-bubble (denial) for a couple of weeks. Then, I have another appointment and the hope I had been growing is dashed and destroyed in about a 2-hour time span. I cannot possibly convey to you how absolutely wretched these appointments are, I can only tell you that I would not wish the “gift” of this pregnancy’s anxiety to the person I hate most in this world. I’ll be 32 weeks tomorrow, and I’m thankful that this pregnancy is drawing to a close. I genuinely hope this baby comes early. Not *too* early, but early. So that this part will be over, and we can move on.

School continues to be unimportant. I ignore it as much as possible because I have very healthy coping mechanisms called: 1) avoidance and 2) eating all the things.

I’m sorry if you’ve called me, sent a text, or left a FB message, and I haven’t responded. I fully intend on responding to each one, and your reaching out is so appreciated. I’m just buried in my feelings, and I’m feeling fragile lately. You see, I used to think I was kind of badass and could handle heavy and uncomfortable things, but I was stupid. I am not very strong unless you count waiting until I get into my car to fall apart when leaving my hellish appointments. My faith is shaken, and I’m struggling to find the good in things right now. I don’t want to be anyone’s rain cloud, so I’m retreating to my safety bubble (the couch–lets be real), and I’m waiting for Clark to get here, so that I can come up for air. Love to all of you beautiful people.