Spring and New Beginnings

Spring has sprung! Sunny daffodils now line my drive. The Bradford pear and saucer magnolia trees in  the backyard are in full bloom. Ah, my yard has life again! When I look out my window, I still see barren branches and mostly brown grass, but I also see flecks of color and signs of life. Spring is probably my favorite season. Well, when fall comes around giving a little relief from the unbearable humidity and heat of an Arkansas summer, I flip-flop like a politician…but right now, spring definitely has my heart. It's a reminder that He creates life from dormancy transforming even the dreariest landscape. Indeed, He makes all things new. I've heard it said that there has to be a winter in order to truly appreciate spring. While I would still be fine living in a climate of perpetual spring, I can assure you there is truth in that statement. While, some days, things still look a bit dreary at first glance, I can think back to last summer when we were experiencing some truly bleak, winter days and gain a fresh perspective. Now, I gaze out at our circumstances and I can see buds of colorful hope springing up from darkness.

Last week, Caroline saw her pediatrician for her last RSV shot (Hal-le-lu-yer!) We weighed her but then she started choking a bit so I asked that we not lay her flat for them to measure her length. We weren't there for a check-up anyway so I reasoned a length wasn't that vital. Well, Dr. B comes in and says, "I need a length on her." Now, she and her nurses are excellent and very accommodating so they figured out a way to measure her without having to lay her flat- thanks, ladies.  I still asked why she needed a length. Her response- it still floors me- "Because Caroline has gained quite a bit of weight since last time and I need to make sure she's not getting fat." My jaw might have come close to hitting the ground. See, if you had told me last summer that there would ever be concern of Caroline "getting fat," I would have told you to lay off the crazy sauce.

My baby, who entered the world blue as a smurf.
My baby, who didn't receive any milk for the first 3 days of life.
My baby, who relied on a feeding tube for nearly a month.
My baby, who couldn't drink an ounce without choking.
My baby, who couldn't breathe out of her nose.
My baby, who has been through 10 surgeries.
My baby, who battles severe reflux.
My baby, the fighter, who has every reason in the world not to thrive, is growing and surpassing limits and expectations.
My baby, caused concern for "getting fat" and I could not be prouder.

Well, it turns out, Caroline is right at the 75th percentile on the growth charts for weight and length! In my former life as a dietitian, I spent a lot of time looking at growth charts and helping parents keep their children on a healthy curve. I had planned on battling texture aversions and feeding difficulties alongside her to just keep her on the chart and, honestly, was hopeful for somewhere around the 10th-25th percentile. How she delights in proving me wrong. So, what else has Caroline been up to besides eating? Well, she's going through this stage of clingy-ness. Caroline has always been a very attached baby, but this is a whole 'nother level of attached…like, I think she would be perfectly content if she were physically attached to my hip via velcro. I'm ashamed to admit I have felt a bit put out.  Why won't she just sleep 4 consecutive hours at night? Why won't she just let me set her in her busy seat so I can shower? Why does she act like the highchair and stroller are now torture chambers? Then, I think about last May when I wasn't allowed to hold her and how I would have done anything for the chance to rock her to sleep. I think about all of those studies I read while I was pregnant and worried how or if she would bond with me. Well, like I said, Caroline loves to take my fears and plans and prove me so very wrong.

Yes, I am thankful for spring and this little bud who keeps growing and blossoming despite the odds.

Jedi Powers and King David

I really hate waiting. Waiting lines. Don't you hate when the person behind you stands way too close?  I have personal space issues, I guess. Waiting rooms. Giant petri dishes. I will try to find the most isolated area and never fails, someone will sit right beside me and hack or talk loudly. That reminds me of Caroline's first surgery. We were still in the NICU. She was 2 weeks old. A very traumatic experience for all of us to say the least. My family and I sit down in the surgery waiting area and a family next to us talks about funerals and burial plots the whole. dang. time.

Annoying Person #1: "At my funeral I want them to sing that one song..."
Annoying Person #2: "Well I want the plot by (so-and-so) not that other one…"

 If there were ever a chance to use some Harry Potter magic to punch someone and then make them forget the whole incident….Oh or maybe some Jedi mind control.
Me: (Throat punches annoying person)
Annoying Person: "What the -"
Me: (Waving hand in front of his face) "I did not throat punch you."
Annoying Person: "You did not throat punch me."
The lesson here is there are plenty of topics to discuss in a surgery waiting room…death is not one of them, but I digress...

If you recall, we have been in a waiting period lately. We came to a fork in the ride. We chose a path. A new path. Then, we had to exit the ride momentarily as this new path is being readied. We stepped away from the platform to reassess our objectives and choices. We bought our tickets. Then we waited. I got a long-awaited call yesterday to confirm we are booked on this ride and given a departure time. As thankful as I was to receive that call, I still felt annoyed by this waiting period.

When I feel overwhelmed by the unknowns and the wait, I go to my guy King David. I am actually aware there are other books in the Bible, but if you were to peek at my notebook, you would think I only knew of Psalms. When I let doubts consume me, I copy down His truths and promises much like a student copies vocabulary words and definitions. There's something about actually writing out the words by hand that helps them soak in to my heart. Lately when I pray, I feel at a loss for words. Then I pick a Psalm and pray those words. I realize David wasn't the author of each one, but he did author most of my personal favorites.

I once heard someone say that if David had Prozac, the Psalms wouldn't exist. I have a problem with that observation. Sure, his Psalms are gritty and seem to waver from one emotional extreme to the next, but consider the obstacles he faced. Consider the long wait he endured to become king. Saul wasn't going to relinquish that throne without some conflict. Imagine being chased by a man and his armies- who were devoted to ensuring your destruction. I know I would find myself complaining much like David does at the beginning of Psalm 13…

"How long O LORD? Will You forget me forever?

  How long will You hide Your face from me?"

Then, see how David changes his prayer…

"But I trust in your unfailing love; 

my heart rejoices in your salvation.

I will sing The LORD'S praise,

for He has been good to me." 

David was flawed, but he was still called a man after God's own heart. God promised him the throne, but he had to endure a difficult waiting period. He made mistakes- big ones but through them he became more appreciative of His grace.  Troubles surrounded him and he did his fair share of complaining. It seems odd that he would change his tune so quickly, but David remembered God's promises - past, present, and future. He could look back and see that God had not failed him yet. He called on God's character.

He is trustworthy.

He is faithful.

He is loving. 

Like David, I am so very flawed. I complain. I make mistakes. Yet, I pray during this difficult wait, that  I will recall His promises and His character. Just like He showed up during that first surgery and kept Caroline safe…and kept me from harming the annoying family…I know He will keep showing up. He hears every grumble, sees every tear, and He answers. I know He began a good work in Caroline. I know He will see us through and He will complete this good work. 

Life: Unfiltered

Today I had a crazy idea. I thought I would try to take a picture of my child. Now, a picture, isn't that difficult. I take several pictures of Caroline every day. Today was different. We were playing and having a great time. Amidst the laughter, I was busy snapping pictures trying to capture each smile, each nose crinkle, each mischievous look. Then, during a nap time, I glance at the dangerous distraction that is social media. Everyday, with Facebook, Instagram, and, my personal favorite, Pinterest, we are  inundated with perfect pictures of perfect homes filled with perfect families and perfect furniture. Suddenly, what once seemed "just right" seems somehow lacking. The thing about social media is we can filter our images and how we are perceived. Nobody wants to post a picture of a burnt dinner with a #homemadegourmet. We post the good stuff- the picture of the happy-Pottery-Barn-catalog family at the pumpkin patch (#blessed, #fallfamilyfunday) when, maybe, the whole experience  was absolute misery( #carridefromhell.) There's nothing wrong with posting the good stuff- I mean that's really what we want to focus on in life! If I can just be real for a minute, I honestly don't want to scroll through my newsfeed and see a post about a kid crying or one filled with complaints about a lazy spouse. I don't believe in using social media as a weapon- especially one formed against your family. That being said, I had a lesson today in filtering and being present.

I got some great pictures of Caroline being Caroline and fully enjoying it.

Then I saw pictures of babies in bows. Caroline has a dresser drawer full of bows that she never wears. I thought, "These pictures are great but how about a few dressed up?" Here's how that experiment went down…

"Uhhh, Mama? You know I don't wear bows." 

"Yeah, this thing is coming off in approximately 7 seconds." 

"Grrrr….Mama makes me so mad. Just wait until she gets that frizzy hair within my grasp. She will pay for this bow incident. "

"Bwahahaha! Victory is miiiiiine!!"

As I am unsuccessfully taking these staged, bow pictures, I notice how toys have taken over my living room. This room used to look nice. There wasn't always towels piled in the chair or blocks strewn across the floor, or a giant baby yoga mat in the center of the room. If you look closely, you can also see a brown Newfie on the leather couch- now, she has been a permanent fixture. I started feeling frustrated with myself…and then it hit me. I can spend time filtering my life or I can actually enjoy what is in front of me. I didn't get any good pictures of Caroline in a bow, but I got some great pictures of her being her and that's all that matters.

 Embracing transparency involves living an unfiltered life. I will keep focusing on the good things but I want the good to be genuine and not manufactured. Yes, I want my house to look nice along with the people in it, but mainly I want to spend each minute enjoying life with these people. My people.

Joy in the Wait

Can you do "enough" for your child?

That's the question I have been asking myself lately. The question I want to ask others.

When you look at your child, do you feel this overwhelming sense of satisfaction that you have done "enough" as a parent? That you have succeeded in raising a healthy, well-rounded, respectful individual who contributes to society?

For the baby who had a rough start…
Do you ask "Am I working with her enough to help her meet these milestones? Am I bonding with her enough?"

For the child who was always ahead of milestones but is now struggling in school…
Do you ask "Am I doing enough to get her the right tutoring or counseling? Am I pushing her enough? Am I pushing too much?"

For the adult who started on the straight and narrow but lost her way…
Do you ask yourself, "Did I take her to church enough? Did I help her too much? Did I let her fail enough? Did I let her fail too much?" Because doing "enough" doesn't always mean doing for your child but teaching them to do for themselves.

I have come to the conclusion that I will always feel I have come up short, that I could have done more…but I want to keep trying. This brings me to our current point in this crazy ride. We approached a fork in the tracks. We chose a path and now we're sort of at a standstill on a steep climb. Is that vague enough? How many times can I use the word "enough?" Well, until we know more, I don't want to share specifics just yet, but for those of you who ask me how you can pray, here it is...

Please pray for peace during this climb. Pray for peace over this decision to choose another course. Pray for us during the waiting. Although we feel an urgency, it doesn't mean everyone else feels that urgency. I'm not the best at waiting- understatement of the century. I like doing. Pray I will hold my thoughts (and tongue) captive to Him while we wait. Although there is pain and fear in the wait, my mom reminded me yesterday that there is also great joy- like nothing I have ever known.

"Be still in the presence of  The LORD, and wait patiently for Him to act…" 

~ Psalm 37:7 

"You both precede and follow me. You place Your hand of blessing upon my head."
~Psalm 139:5 

Thank you, fellow riders. 

A Beautiful Soul

Last week was one of those weeks that seemed to last an entire month. You know those weeks. As far as Caroline is concerned, it was a great week.  We had a lot of good moments. Moments filled with laughing, dancing, and clapping, in spite of another ear infection and an emerging tooth. I remind myself when we are up at 1 am that I prayed for that tooth. When we were at her ENT appointment last month, I expressed concerns that she hadn't started teething yet. Am I crazy? Well, yes, but that's a well-known fact. See, like most crazy moms, I worry compulsively. I lie awake at night thinking of things to worry about, and one night I worried about her lack of teeth and not being able to have cake at her 1st birthday party. Now you get a glimpse into my brain- it's like 2 monkeys fighting over an ice cream cone in there. Anyway, back to the ENT appointment, Dr. Hartzell told us she probably wouldn't start teething until over a year old. Well, in true Caroline fashion, she decided to prove him wrong and I happily and tiredly announce we have a tooth, people.

We also had a big adventure at ACH picking up our new helmet…and it's pink. I've had questions about why she had to get a new one, well her head grew, significantly. If you remember back in January, we saw all of our teams and this head growth was a concern for her neurosurgeon and craniofacial surgeon. Long story short(er), they are going to continue monitoring her and want to see how much the new helmet will shape her skull before attempting surgical interventions. 

This brings me to other news. News I don't want to share. I didn't want to even attempt writing about this because my words will fail miserably to describe the love, respect, and appreciation I have for this woman. 

This is Dr. Honnebier, affectionately called Dr. HoneyBear around here, Caroline's craniofacial and plastic surgeon. She died, very unexpectedly, last week. I learned of her passing when we returned home from the helmet fitting. This amazing lady performed the cranial surgery and assisted in our lip repair and was to perform many additional surgeries for Caroline. It is hard to describe, but when you entrust your child's life with someone, you develop a strong bond. When I learned of her passing, it felt like the wind had been knocked right out of me. Losing her has been like losing a beloved family member. That may sound extreme, but she had spent more time with Caroline than a lot of our family. We first met Dr. H when Caroline was 4 days old. She had just had her first CT scan to help determine the severity of her choanal atresia. Then, a pediatrician came in and told me she apparently had craniosynostosis. She said, "it's mainly cosmetic, but they will probably want to do surgery eventually." Well, the next day we met Dr. H and we learned she would need surgery but it was much more than cosmetic. I recall a nurse describing Dr. H as "tall, blonde, and beautiful." I had this American idea of  Barbie beautiful in my mind, but that wasn't Dr. H. She was tall and blonde, but she was no Barbie. She was much more than my shallow preconception. She was striking. When she wasn't wearing scrubs, she wore black leather and boot socks with skulls and crossbones. She had tattoos and piercings. Honestly, she looked like someone you might avoid on the street. She was different and she embraced it. She had a commanding presence and she made you take notice. I remember she had 2 young residents with her and they looked exhausted just trying to keep up with her. She just looked at Caroline and ran her fingers precisely over her head and knew in an instant what we were dealing with. She explained the surgery and what would happen if we didn't do surgery- inhibited skull and brain growth, mental delays, and physical anomalies. I appreciated she took the time to explain the medical reasoning but didn't overlook the importance of physical appearance. She said in her strong Dutch accent, "you want her to be able to play softball and wear a regular helmet just like all the other girls." While other doctors were cautioning us about potential delays, Dr. H was talking about my girl in terms of doing "normal" kid things and I appreciated that. She looked at me, sitting there with tears welling in my eyes and took the time to assure me that I didn't do anything to cause the anomalies and described them as "accidents of nature." This is what made her a rare jewel among doctors,  Dr. H was a straight shooter but she was also compassionate. Dr. H loved what she did and devoted her life to helping children and families like ours. She was truly invested in Caroline and her future. She advocated for her. When our buddy, Helmet Guy, was giving us some trouble, Dr. H wasn't having any of it. When I spoke to her nurse about needing a different helmet, I expressed my concerns about how Helmet Guy would react. She said, "Dr. Honnebier is going to call him personally and she's a strong woman who doesn't  take anything from anyone" then added with disdain, "especially a man." I do believe I heard some finger snapping there.  True to her word, we were back in his office in a few minutes being fitted for a new helmet. At our first meeting, she told us about a camp she established called Camp Laughter. It's a camp for children with craniofacial anomalies and their families to connect with others going through similar struggles. We were looking forward to going someday, and still plan to, though it won't be the same without her there. 

How do you say enough for someone who brought so much hope to the world and changed so many lives? You can't. So, as I said, my attempt is feeble and my words fail, but thank you, Dr. HoneyBear. I know we will see you again. 

Joyful Warriors

Yesterday was one of those days that was full of questions but lacking in answers. I spent a good part of the morning talking to the neuro clinic at ACH and our local pediatrician. Although our neurosurgeon and his nurse were unavailable to explain the CT results and plan of action, we fortunately have a wonderful advocate in our pediatrician who was able to pull a few strings and glean a little insight. We still don't have a definite plan, but we have enough information to make it through the weekend without going crazy. The ventriculomegaly has progressed and likely she will need a shunt at some point. Hopefully, that point will not come soon. I cried some more and ate pie- did you know it was National Pie Day? That was good enough reason for me to have a piece for lunch while I was waiting on that call from our ped.  At least I had the good sense about me to only buy a piece and not an entire pie because, by now, there would probably be an empty pie plate on the nightstand. I knew this shunt was a probability but until now, we have had so many other issues to focus on and when you focus on one, you tend to temporarily forget about the other scary things. At this point, I have so many questions for God. Every time I'm at ACH and see all of the sick children and exhausted caregivers, I ask Him "why?" I want an explanation. Last night, I picked up my Bible looking for a "why." I didn't get one, but I did get a "how." A how to cope. A how to find peace for the moment.

"Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus." - 1 Thessalonians 5:16-18

Although we will never understand why Caroline has been given so many battles, one thing Josh and I know is we will continue to fight with her and for her. We will fight for the highest quality of life, always. We will fight for her happiness. So, we will choose to be joyful warriors and lead happy lives. We will not be made victims or martyrs.

One of my resolutions this year was to start a Happiness Jar. Are you familiar with those? You basically write a little note about the happiest part of your day and place it in the jar. Then, when you feel down, you can read a few notes to remind yourself that life is still good. Well, in my true fashion, I have yet to start my jar which is just pathetic, it's just a jar, paper, and pen- but today is the day….and maybe eventually I will take down my Christmas tree too…maybe. Think I could get by with a Holiday Tree? I could just leave it up and decorate for each holiday. Hearts for Valentine's and shamrocks for St. Patrick's…

Today, Newfie kisses make us happy. So very thankful for this gentle giant. 

A Change in Plans

Yesterday and I are not on good terms right now. Yesterday was one of those days that did not follow my planned itinerary. Before you think I have finally made the what you know would be a short trip for me, to Crazy Land, hear me out. See, I knew yesterday was going to be long and inconvenient. It was after all, a big clinic day at ACH. We were going to see our teams that included our wonderful neurosurgeon, craniofacial surgeon, and cleft surgeon and their talented entourage. Whenever you are seeing 3 specialists in one day, you can expect long waits and slight changes to your schedule. I am a planner and generally, I like to have my days adhere to my plans. I expected we would see our neurosurgeon and craniofacial surgeon in the morning and we wouldn't have to be back at ACH until our visit with helmet guy at 1:00…that meant a nice long lunch break which would include a Newk's Splenda tea, a trip to Carter's and maybe even Target if we were really lucky. Well, instead of sipping on tea and shuffling through racks of adorable outfits for Caroline, I was sitting in a room outside of the  CT department listening to my baby scream and my husband sing. Yes, yesterday took some unexpected turns.

Let's go back to the neuro/cranio meeting. Dr. Cai, our neurosurgeon enters the exam room with Dr. Honnebier, our beloved craniofacial surgeon, and their nurses. There are some concerns about Caroline's head growth. Apparently, it is growing a bit too fast. It could be something as minor as genetics. My husband comes from a long line of big heads, like literally, big heads. Dr. Cai turns to his nurse and tells her to schedule a CT scan for that day. Wait, that was not on the itinerary. Here's how the conversation went down…well basically anyway…he doesn't speak much English so a lot of our conversation was head nodding.

Nurse: OK, we will get you set up to head down to CT.
Me: Oh. Like right now?  So this is serious?
Dr. C: Potentially. We may need to perform surgery right away.
Me: Wait. Like brain surgery?
Dr. C: Yes. If it is hydrocephalus, she will need a shunt.

 Then Dr. H starts her examination. Caroline leans into her and hugs her, (how precious is my baby?) resting her head on Dr. H's stomach. She runs her fingers in precise motions along her head and is ready to give her assessment. Remember back in September, Caroline had endoscopic cranial surgery? Well, unfortunately it turns out that wasn't enough. She's going to need the full cranial vault reconstruction (CVR) and a frontal orbital advancement (FOA.) Those are big, medical terms that basically amount to surgeons cutting Caroline's skull ear to ear, removing her forehead, yep, shaping it, and sticking it back. On the bright side, Dr. H will be able to repair Caroline's eye sockets and forehead all in one surgery. The negative- it is an invasive and intensive procedure. It can last up to 10 hours and this time, it will involve an ICU stay and blood transfusions. The Red Cross has been calling me non-stop to come donate anyway, so now at least I have a valid excuse for saving up my blood. Poor Josh AKA Giggles McShaky says, "it's ok, they can take 2 units from me."As you can imagine, at this point in the morning, Josh and I are overwhelmed, frazzled and confused. He and I carry our sweet girl down to CT. We walk mostly in silence, each lost in our own fog of thoughts, fears, and emotions.

The doctor said what? 

Now that I have you up to speed, here we sit waiting on the CT. I sit there listening to my sweet girl cry in fear and my sweet husband sing to her. I say to myself, or perhaps aloud- I don't even know, "this is not how today was supposed to go." Babies aren't supposed to have brain surgery. Babies aren't supposed to have their skulls removed and put back in place. I want to believe that Caroline will fight through and come out on the other side even stronger and more amazing than before. But, if I could just be real and honest with you- I am sick and tired of her having to fight so damn much. I know she's strong and I know God is big, but today, I just want to be sad about yesterday. I want to spill a few tears in anger and sadness and embrace the messiness of it all. This is an awkward, messy gift that can't be shoved into a box, wrapped in pretty paper, tied with a neat bow, and stamped with an inspirational quote. So, I ask you once again, please pray. We are still waiting on results of the CT scan so for right now, we are praying she won't need brain surgery, but ultimately, we do want to know if there is an issue that needs addressing immediately. So to summarize, we are looking at potential brain surgery, skull reconstructive surgery in the next 2-3 months, and palate repair the following month. We were planning a vacation in April and a colossal 1st birthday party in May. Now, those plans are looking a bit iffy. I confessed to my mom earlier today that I feel badly for posting only when something is wrong. I mean, how depressing is that? I feel like that girl from SNL…
Oh, look, a post from Katie…."Here comes Debbie Downer! (whaaaa whaaaa)"
So, I will try to keep you updated on everything, on happy days and sad days, even if it's only a picture or a sentence. Now enough of the sad news. Caroline knew I would be worried this week, so she decided to learn how to clap and wave "hi" and "bye" all in the span of 3 days. If this doesn't make you smile, then you might not have a heart, good luck with that.