Results?

And my crappy Lazarus analogy

Negative. Mayo Clinic has deemed the results negative, but did acknowledge an elevated level of glycosaminoglycans. They believe this to be from contamination, or could be a sign of some other disorder. So though the answer is not a perfect and resounding “NO!” it is more of a “Almost assuredly and mostly no.”

You would think I would have jumped for joy, but instead I felt immediate fear. What if the elevated levels mean that he actually does have Hurlers?! What if we have to repeat this test?! I CANNOT WAIT AGAIN! I will kill myself. I will jump in front of a bus. I will die because I cannot take one more ounce of stress. These thoughts were immediately followed by more fear that by me saying ‘I can not take any more’ that I was issuing a challenge to God to give me more pain and anguish to prove that I can take it. Cynical, I know.

I put too much faith in science and logic and exactness. Jesus knows that about me, and He wants me to trust in Him whatever the outcome, and I struggle with that–with saying, “Whatever the outcome, I love and trust in You.” Because a part of me, the sinful part, does not feel that way. I love Jesus when I receive His blessings and goodness, and I often lose faith in Him when “it’s not fair.” Jesus knows this about me. So, I believe He gave me a lab result that wasn’t quite perfect. And I reacted predictably–in simultaneous relief and despair.

I am reminded of John 11 account of Lazarus. Jesus loved Lazarus and knew he was very, very sick. Despite this, Jesus stayed where he was for 2 days and said (paraphrased), “This will not end in death, but this will be for God’s glory, and God’s Son will be glorified through this.”

Y’all. Lazarus died. He had been dead for 4 days by the time Jesus came into town. Lazarus’ sister Mary told him,”If you had been here, Lazarus wouldn’t have died!” And then Jesus opens the tomb of a dead man, tells him to get up, and he DOES! Like a mummy, Lazarus walks up out of the tomb. Seriously on the mummy part. John 11:44 says his hands and feet and face were wrapped in cloth 😱

What I’m trying to say, and probably failing at, is that God rarely gives me expedient, nice, and tidy answers. He gives me halfway answers, prolonged waiting times, and frustrating questions. I forget that an answer of “maybe” is not the same as a hard “no,” and sometimes I forget to be grateful for that. Jesus is working for something huge, here. Bigger than huge, even. My despair is caused by putting my faith in the world instead of the One who created it. Shame on me. Jesus is healing my baby. I’ve seen proof of it over and over again, and I still doubt. And today, He answered our prayers. Thank you for your prayers. I am blessed beyond measure by those who love and pray for me and my baby.

Clark is an overcomer, and we are mighty when we unite in prayer. Love to all ❤️

EDIT: I was hesitant to submit this update because my pediatrician wanted to talk to geneticist to clarify the confusing results. I decided to believe in the negative result. I pressed submit and my pediatrician called me immediately. He said that the Mayo Clinic geneticist said the elevated level was from craniosynostosis and NOT Mucopolysaccharidosis. You will never convince me that wasn’t Jesus. 😭👏🏻🙌🏼❤️

Broken for a purpose

Welcome back, Beka

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

OB/GYN: 3

Pediatrician: 8

CT scan: 1

Craniofacial surgeon: 2

Neurosurgeon: 1

Neurologist: 1

Cardiologist: 1

Orthopedic surgeon: 2

ENT: 1

Pre-op anesthesia: 1

Additional labwork: 4

Hearing screen: 1

ABR testing: 1

Helmet fitting: 1

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

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

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

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

“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.

When you’re just keepin’ on, keepin’ on

Or, life lately

We had our appointments with our OB (regular baby-doctor) and our MFM (Maternal/Fetal Medicine aka high-risk baby-doctor) physicians this week. It started off with the MFM appointment, which Ben couldn’t come to. I went in, did all the vitals, etc. Then they asked me to lie on the reclining table thing while the tech scanned me. This was awful. You see, on a daily basis since about 18 weeks, I feel like I cannot breathe. It was a major complaint of mine when I was pregnant with Darcy, but it is 10x worse this pregnancy. No position helps unless I am sitting straight up, or leaned forward like a 75-year-old man with COPD.  So, after about five minutes, I said, “I’m really sorry, but I need to sit up now.” They said, “Oh, we’ll raise the head of the bed. That will help.” “No, I am going to puke if you don’t let me sit straight up.” Then everything starting going black, and I started sweating, and I thought I was going to die. So, my sonographer finished the scan with me sitting straight up. “Wow. You’re really symptomatic, how do you sleep at night? Reclined?” First of all, thank you Captain Obvious. Yes, I am super symptomatic because I CANNOT EFFING BREATHE. Secondly, reclining is terrible. You’ve just witnessed this. And I do not sleep is your answer. I wake up every 45 minutes to an hour to try to readjust. Well, this information concerns the MFM physician, and he says I might have congestive heart failure. WUT? Then he follows that little pearl up with, “I mean, do you exercise?” “Well, I ran a half marathon last December, and ran 5-10ish miles a week up until 15 weeks with this pregnancy.” “Oh okay, then. You’re probably fine. We just don’t see many small mamas with this much trouble breathing.” Anyway, he examined me and determined that I was just “super symptomatic,” and I wasn’t in congestive heart failure.

That was how things began. Then we discovered that based on my scan I have borderline polyhydramnios. This means I have almost too much fluid, which can contribute to a litany of pregnancy issues including “breathlessness.” Clark looks the same—skull is funky, foot is clubbed–AND is measuring a couple of weeks ahead of my due date. Also, because he is a wiggle-worm, MFM couldn’t get great images of his pulmonary artery, and I’ve been referred for a fetal echocardiogram. I also failed my 1-hour-glucose screen that day, so depending on my results of my 3-hour-test that I took today, I might have gestational diabetes, too.  Then the doctor said he wanted me to get another genetic screening test done, but the first we had done wasn’t covered by insurance (you do not even want to know the price tag on that one). So, I asked if it would change the treatment plan, and he said no, so we declined the test. Anddd, basically Tuesday’s appointment was a huge pile of suck.

I’m okay with it all now, but Tuesday, I was distraught. I try to stay positive, and I know that these physicians’ jobs are to rule out any issues, but I’m at the point where I do not desire to know one more possibly negative thing about this pregnancy. I just don’t care to know. If it isn’t going to make a difference, then I don’t give a damn to know if or what kind of chromosomal abnormality MAY exist in Clark. Unless I start passing out, I don’t want to know if my heart function is shitty because of CHF. I have enough information at this time to decide I DON’T WANT TO KNOW ANOTHER DAMN THING. Because everything is “possibilities” and “probabilities” and “increased chance of” and/or “potential problem.” For some, knowing everything brings peace. For me, it brings doubt, and I don’t want to give Satan any more reasons to tempt me to doubt the goodness of God. I just don’t. I truly believe that God will give me the strength to deal with whatever comes our way WHEN it actually comes our way. One of my favorite books concerning faith is Corrie ten Boom’s The Hiding Place. She was just an incredible woman filled with wisdom, and she kind of agrees with me on the worrying thing.

Corrie ten Boom said, “Worrying is carrying tomorrow’s load with today’s strength- carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.”

And the more information that something “could be significant” or “could be nothing,” the more I worry.  Ben and I have different perspectives when it comes to hardships and faith. Ben always believes that things will get better. That it IS going to be okay. I personally believe that saying things “will get better” is an invitation for things to become exponentially worse. I’m truly not pessimistic, but even you have to admit that the scales of fairness, statistics, and equality seem a little warped, and not in our favor. I believe that Clark won’t be healed, but that God will give me the strength the deal with whatever comes our way when he is born. My sister keeps telling me, “Clark will be who he has been created to be.” And that brings me comfort. God has allowed all of this. He has created Clark for His purpose, and He loves this baby far more than I could ever imagine. Just like He loves me. And that is good. It is the good stuff in the ugly situation, y’all. Beauty from ashes, and it will be beautiful.

As for grad school, I withdrew from one of my classes. It was an exhaustive, research-based, labor-intensive class, and I just don’t have the get-up and go for that and my other clinical-based grad school class, 40-hour work weeks, being a high-risk baby incubator, and existing as a functional human. It’s beyond my abilities at this point. So, this skews my overall ‘graduate as quickly as possible’ plan. I now feel at peace with this decision, even though it felt like a huge personal failure at the time.

Darcy is hilarious. She is rough and tumble and so, so much fun. She loves to run to me and shove her face in mine and just giggle. She also has about 10 bruises and six scratches from her legs to her face, and both knees are skinned and scabbed. Kid plays hard. Also, we got an incident report from her daycare because of an altercation regarding possession of a toy. Darcy had toy, friend wanted toy, a struggle ensued, and Darcy bit the hell out of friend. Ohmylanta. I’m sorry, mom of bitten child. My daughter is unreasonable and will fight to the death for her teeth to be brushed, so a perceived threat over a toy will likely continue to be dealt with a heavy hand (teeth). Sorry. She doesn’t bite at home.

Anyway, that’s all for now in our lives! I promise, I plan on writing a fun, non-heavy blog later on in the next few days detailing our first trip to Ikea with baby Darcy. Bless you, if you’re still reading along. Love to all.