Pass the Snickers

"What's next?"

It's a question I'm asked often...and I do my fair share of asking, too. The past couple of months we've had a nice break from clinics, OR's, and needles. We have been focusing on our therapies and watching Caroline discover all sorts of new tricks. It's been so much fun to watch her figure out she can stand up on her own. I never get tired of saying, "I see you!" and hearing her cheer "yayyyy" to herself.

Yep, September and October have been good to us. Now, it's time to prepare for a huge climb on this rollercoaster. We have known Caroline would need this surgery for 9 months now. We first met Dr. Fearon 7 months ago  and knew at that first meeting he would be our surgeon. Since then, both he and her neurosurgeon, Dr. Sacco, have each performed surgeries on her...so in other words, we trust them. One day I was explaining our relationship with these surgeons to a friend. I told her in my eyes, they are both just below angels but above men. We know we are in excellent hands. We know the facility. We know the staff.

And yet...

I have been avoiding the thought of this surgery.



I know it's necessary and it will greatly improve her quality of life, but I'm still scared. If I let my mind go there and wander around the fears of potential complications and the recovery process, it could get dangerous. Walgreens is just down the road and tis the season for Halloween candy.  It's too early to start binging on the mini peanut butter snickers, y'all. So, instead, I've been focusing on doing as many fun things with Caroline as possible. She enjoys shopping as long as she has her Starbucks blueberry scone in reach. They know her order now...whole milk, no ice, warmed scone. She knows what she likes. We go for wagon rides, bake cupcakes in her play kitchen, and hug the dogs. Those are my kind of therapies.

This week though we have to make time for the not-so-fun outings. Caroline will begin Procrit injections this week and for the following 2 weeks until surgery. This is to help build up her blood levels so that she hopefully won't require a blood transfusion. Yeah, this surgery is the real deal. Here's a link to his website which explains the procedure in detail if you are one of those people who is interested in the details.
The Craniofacial Center Procedure

For those who like a brief summary, here you go...
Basically, the surgeons will make an incision ear-to-ear and will remove part of Caroline's skull (the part affected by the prematurely closed suture) reshape it, and put her skull back in place. Sounds pretty crazy, right? Fortunately, we know others who have gone through the procedure and are doing so well. Like I said, we hope to avoid a blood transfusion but we know it is not uncommon to require one with this procedure. The surgery can take anywhere from 4-10 hours and will require at least one night in the pediatric ICU, more commonly called "the pic" around here. Then she will be moved to a regular room for another night or two. We plan to stay in the Dallas area for about a week as long as everything goes well. She will have pre-op appointments and an MRI to check her VP shunt a couple of days before surgery.

As always, I thank you for keeping up with Caroline and riding this rollercoaster with us. We so appreciate your thoughts and prayers for our warrior girl. She brings me so much joy and I hope she puts a smile on your face, too. I feel like I need to throw this in here, too. I don't know why, but I feel this strong urging so I'm just going to say it. Sometimes it feels like there's no end in sight, and though I don't know your situation, please hear this. If you are expecting or already have a child with special needs, please know it does get easier and it is so very worth it.

"The Hard is What Makes it Great"

"It's supposed to be hard. If it wasn't hard, everyone would do it. The hard is what makes it great."

- Jimmy Dugan (A League of Their Own)

Those wise words pretty much sum up our life, especially the past several weeks. I apologize for my lack of updates. Again, it is a really good thing I'm not trying to make a career out of this blogging business. The silence here isn't due to lack of news. On the contrary, big, great things have been going on around here. I've just been feeling a little burned out lately. I'm still trying to make sense of why our family was picked to board this ride. I read others' blogs and am amazed by their sunny perspectives, wisdom, and random, useful information on how to best organize your entire life with labeled wicker baskets. I worry that my lack of  profound answers and helpful decorating tips will disappoint. Then, I'm reminded that this is all about Caroline. I owe it to you, her champion, to let you know how your prayers are impacting our lives. So, I hope you will forgive my absence and continue riding with us. I can't guarantee answers or recipes, but we'll have fun watching Caroline thrive.

So, another reason I have been slacking on updates....I am busy chasing a little person around all day!

Yes, you read that right. Caroline is now mobile! At 16 months old, she has learned to crawl and scoot all over the house...and she's getting pretty fast, too. She is busy exploring the world around her. Now when I open a cabinet in the kitchen, it's not unusual to find a block or rubber duck sitting in a mixing bowl. Her way of saying, "Caroline was here." Do people still do that? Surely not.

Anyway, Caroline is enjoying her newfound independence and I have to say my body is thankful as well. Amazingly, Caroline's appetite and ability to eat have not been impacted by all of her surgeries, so she was getting a bit heavy to be carrying around all day, you know?

We started physical, occupational, and developmental therapies in August and it is amazing how much Caroline has progressed. It was really hard those first few sessions and some days it is still really hard. She still has trust issues with unfamiliar people and situations. Some days she starts crying as soon as she sees the therapist pull up the driveway. Today was actually one of those hard days- filled with crying, screaming, I'm-not-gonna-do-it-you-can''t-make-me meltdown, raw emotion. Thankfully, we are blessed with the best therapists. Seriously. We got the best by the grace of God. They each love Caroline and pray for Caroline and take time to encourage me too. It's hard seeing her so upset and frightened. She reaches her arms out to me, confused why I'm not swooping in to "fix" it. Those days, I say to God, "what's the point?"

Then, I get to see the gleam in her eyes when she's figured out she's just done something amazing. I get to see the joy in her smile when she races me down the hall. I get to hear her laugh when she "hides" from me in the laundry room and I walk by and act like I can't find her.

These things are what make the hard, almost unbearable moments, worth it. It's not that I wouldn't be excited if she met milestones easily, but when you watch her work so hard to overcome those expectations placed on her at birth, man, it makes these moments that much greater. Like Jimmy says, "the hard is what makes it great."

Clutter, Coping, & Control

The week before surgery is always hard. For me, in many ways, it's even harder than the actual surgery week. Why? Worry. Worry takes over. I've heard since I was little, "Katie's just a worrier" and it's true. I can worry circles around anyone. I worry about what to pack. I worry we will forget something because you know, if you forget your toothbrush, you won't be able to find one anywhere in Dallas….right. I worry about the drive down. Will she get carsick, twice, again, in the middle of nowhere with no Lysol wipes for miles, so your GPS takes you miles off the route to a sketchy Walgreens? That will one day be a memory Josh and I look back on with humor- but that day has not yet come. I worry about her lab draw and pre-op appointments the day before. Will they get it on the first stick? Will it hurt? Don't even get me started on the worries that come with the actual procedure and hospital stay.

Worry can consume me.


So, is it any coincidence that since finding out we would be going through this surgery, I have decided to embark on a major mission in my home? The past couple of weeks, I have devoted my free time, or Caroline's nap time, to "Operation Life Organization & Simplification." See, I'm really not an organized person by nature. Did I have you fooled? It's a common misconception that introverts are naturally organized. I'm truly not. In fact, I am having to train myself to do what feels most unnatural. Instead of sitting down with a book, I pick a project to tackle. I have cleaned, organized, and decluttered every closet, cabinet, and drawer in my home. One day, feeling at a loss because I had organized and cleaned most everything, I grabbed a toothbrush and began dusting my baseboards and then proceeded to wipe them all down. I believe Josh was genuinely frightened that I had finally lost my mind or had been taken over by an alien life form. I've been making regular stops at the local donation center and almost feel close to the workers. Please don't assume it's because I'm an incredibly generous saint. I donate rather than sell because 1. I grew up watching Dateline and assume people on Craigslist and swap pages are crazy and 2. I'm too lazy to write an ad, publish said ad, answer messages about the ad, and meet up with the probably crazy person/serial killer (see reason #1.)
Anyway, the good thing about Operation Life Organization & Simplification, other than having a clean house and actually knowing where the receipt and warranty for the Dyson is located, is the fact that it has given me something to think about. I like being in control. I have absolutely no control over surgery, so I control what I can. As much as I can drown in worries, I can drown in clutter, too.

Throw pillows for days, y'all.

So, I have been bagging up my clutter. The things that have been crowding my closets, shelves, junk drawers- my life- now have new homes. The true junk like the half-used jars of nail polish I bought in middle school- yes, I'm serious, 20-year old nail polish- was hauled to the curb last night and driven away this morning to the dump. The stuff that I just don't need anymore, extra clothes, pillows, bedding, books, has been donated. Each time I drag a big, black sack of stuff to the trash or donation center, I feel a tightness in my chest start to loosen. Does that sound crazy? I actually feel like I can breathe deeper. The other day I noticed for the first time that my jaw was clenched. It felt so unnatural to relax it that I wondered how long I have been clenching.

She's a pretty good helper. Here she is helping me sort through my clothes.
"What were you thinking? Ha! That will never fit again! No seriously, what were you thinking?!" 

Last night, I was standing at the sink doing dishes and the wave of panic hit me- the wave I had been dodging for weeks. I started crying and said, "God, brain surgery! This is so big. It's too big." I felt Him say, "but I'm bigger." Brain surgery is big, y'all. The variables are too many for me to begin to wrap my mind around. All I know is that He is in control and nothing is too big for Him.

"When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you."
~ Isaiah 43:2

Go With Your Gut

I'm not an M.D. I'm not an R.N. I do have letters behind my name, not that they are written by it much anymore. I went to school for a long time and worked hard for "M.S. R.D./L.D." but they don't carry a lot of clout with the medical world. Sure, I was trained and learned a lot about medical nutrition therapy, but nothing could have prepared me for this ride of motherhood. Being a mom is the very hardest position I have ever held, but the most rewarding and humbling. We are constantly being told how to mother our children. You can't scroll through your newsfeed without coming across a parenting article shared with (hopefully) good intentions on how formula is bad or saying "no" will cause permanent emotional scarring. How about those tips from your friend on how she got her 6-week old to sleep through the night? OK, I am seriously confused by a baby who sleeps through the night- and a little jealous because my almost-15-month-old still wakes up at least once.

I'm slowly learning you can't compare your situation to another's. While sometimes I definitely need advice and tips from other moms, I'm learning to trust myself. Before I became a mom, I thought that "Mother's Intuition" stuff was completely bogus- a lie concocted by some moms to make them feel good about their decisions. Then, my life changed.

Remember in one of my very first posts I mentioned that Caroline was diagnosed with ventriculomegaly at our 18-week ultrasound? Well, all through the remainder of our pregnancy, her ventricles were measured and monitored but they could never offer a reason for them being so enlarged.  They said they would have to do an MRI once she was born. When she was 3 days old, she had her first MRI. Her ventricles were still very large but they said they wanted to keep monitoring them. Fast-forward to her cranial surgery last September. Ventricles were getting bigger but still they couldn't diagnose a cause, but also assured us it wasn't anything too concerning. As you can imagine, I was feeling a mix of emotions. Relief that the neurosurgery team didn't think the situation severe enough to intervene but also an underlying fear that maybe we were missing something. Now, at this point on our crazy ride we are supposed to be wearing the helmet. If you follow Caroline closely, you may have thought once or twice, "hey, I don't see her in that helmet much, what gives?" Well, this may sound crazy but I didn't feel convinced about the helmet. We tried it off and on for a few weeks but still something was nagging at me. Like I said, I'm not a doctor. I'm not a genius and I don't pretend to have answers…I just had a feeling. So, I prayed for guidance. That feeling did not dissipate. Then after asking for more testing, Caroline was diagnosed with ventriculomegaly and hydrocephalus.

Hydrocephalus: (from the Greek, hydro- "water" and cephale- "head") is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles of the brain.

At this point, the neurosurgeon still did not want to take action. Now, I'm not a whacko who wants something to be wrong with my child, but unfortunately, measurements don't lie. Caroline's ventriculomegaly and hydrocephalus were worsening which could lead to permanent brain damage and even death. This was the point we decided to go to Dallas for another opinion. The craniofacial surgeon confirmed my apprehension about the helmet. Placing a helmet on a child with hydrocephalus can actually cause brain damage. He and the neurosurgeon wanted a better look at her brain to determine the cause for the hydrocephalus. You may remember that Caroline had another MRI last month. At first, it seemed things were stable. Then we saw our new neurosurgeon this week. Unfortunately, her hydrocephalus has worsened- to the point that the excess fluid is actually causing her brain to deform. We don't yet know if this will result in permanent damage but time is of the essence. We will be going back to Dallas for surgery soon. The neurosurgeon will place what is called a Ventriculoperitoneal Shunt 
This type of shunt isn't the least invasive or most ideal, but unfortunately, Caroline's unique brain anatomy does not allow for the easiest way.

Don't think I'm patting myself on the back for getting another opinion or pushing for more tests. I believe this intuition is a gift from God. His still, small voice saying, "keep pushing, don't give up." Although we face many trials in this lifetime, He is ever so gracious to His wayward, learning mama sheep.

"He will feed His flock like a shepherd. He will carry the lambs in His arms, holding them close to His heart. He will gently lead the mother sheep with their young."
~Isaiah 40:11 

So, here's my piece of parenting advice….
Pray. Listen. Go with your gut, even when it seems really hard. Oftentimes, the hardest way is the best way.

Also, when you are feeling guilty about having your baby go through another surgery, a trip to the toy store helps a little.

Put the Oxygen Mask on Yourself First...

You've seen the safety demonstration. The flight attendant gracefully places the oxygen mask on herself to show you what to do in case of an emergency. Her movements are so fluid and seamless. While I have flown several times, I have never been placed in the position of having to actually remember any of the safety demonstrations; however, I can imagine I would not be nearly as graceful. In fact, I would be doing well to not pass out from the excitement of it all. I'm not good in an emergency. Good thing I switched my major from nursing after my freshman year.

Anyway, the point of wearing the oxygen mask first is because you can't really be helpful if you aren't conscious. Pretty basic, right? Yet this is such a difficult concept. This time last year, we were in survival mode. We were going to ACH for surgeries every other week, sometimes every week. My only concern was keeping Caroline alive. We were all taking turns offering our oxygen masks. We were exhausted, burned out, and miserable- but she kept breathing. Testing, insulin, carbs, glucose sensors, those words did not hold space in my thoughts. I was managing my diabetes, but just barely. My endocrinologist, bless her soul, was worried but she always said, "I know you have a lot on your plate" or "It's hard to do everything right when you're spending so much time at the hospital with Caroline." At our visits every 3 months she would ask about Caroline. She would touch on my reports- yeah there were a few highs and lows but my average numbers were always really good so she didn't lecture. This last visit was different.

She asked about Caroline so I updated her on the latest. As a doctor, she likes to hear about surgeries and recovery but as a mom she likes to hear about her little quirks and games.
"Well, palate recovery is going well…still have a big cranial surgery in November…she can do 'The Itsy Bitsy Spider' which is really encouraging to me, I know she must be smart…" She nods politely and places a hand on my arm and says, "How are you doing? I mean, like, mentally, how are you doing?" I tell her it's getting better- some days are harder than others but overall, things are much easier now. We go over my reports and really the numbers look even better than I would have expected. She says, "OK, now it's time to start taking care of yourself again. Get back on track with your diet. Exercise." One of my dear friends and mentors told me a few months ago to put the oxygen mask on myself. Sometimes it seems incredibly selfish to leave Caroline with someone so I can go exercise. Sometimes it feels really selfish, when I have that shaky low, to gulp a box of juice before I get back on the mat to play with her. Diabetes complicates things. I really do want to just focus on taking care of my baby, but in order to be healthy enough to take care of her, I have to be a little selfish sometimes. So, here I am, bottle of water by my side, continuous glucose sensor in my stomach, and back to logging religiously on My Fitness Pal….apparently the App doesn't do anything unless I actually use it!

Learning How to Sail

Never Say Never.

Such a tiresome cliche, but that's the thing with those old sayings, they didn't become cliches without being true. Over the past year, our family has relearned this truth over and over. Yet, the past 2 weeks we have been hit upside the heads with the humble stick.

If you remember, we are in the process of starting therapy for Caroline. She has gone through all 4 therapy evaluations and now we wait on the therapists to complete their reports and then we will meet with our Early Intervention coordinator to choose how much and what type of therapy we want. Now, there's someone I never thought I would be dealing with- an Early Intervention specialist with DHS. When I was first contacted by the therapy center, I was informed we would have to go through DHS since Caroline is younger than 2 years old. "It's just protocol" she said. I was immediately uncomfortable with the idea. Though I told myself "I'm not an elitist" (though I discovered that yes, just call a spade a spade, I am a snob) I didn't feel we were "DHS material." I reasoned those services were for those less fortunate, bless their hearts. Then, I was educated. I met with the coordinator and learned about DHS and their services. Then, I met with each therapist. Though the coordinator had suggested applying for TEFRA- an extension of Medicaid for disabled children- I brushed it off. We had been hearing the TEFRA speech from ACH since before Caroline was even born. I said to myself, "well that's not Caroline, disabled...that's not our situation...we have private insurance."
Then, I met with the physical therapist. She played with Caroline and completed her evaluation and then asked me, "have y'all looked into TEFRA?" I said yes, which wasn't a lie, but that we had private insurance and had already met our in-network and out-of-network deductibles- a really twisted sort of brag now that I think about it. Anyway, she nodded and explained that our private insurance does not cover any type of therapy for "children with disabilities." That sort of knocked me over. We had been sitting on the floor with Caroline and I rocked forward and said, "not even with all of her diagnoses?" "No, sadly they will not pay. Now, if she were an adult and had a stroke or car accident and needed therapy, they would, but your insurance company does not pay for therapy for children." She went on to state that Caroline is "severely delayed" and would need more therapy than DHS would cover.  Later that evening, Josh and I were going over the numbers. There was no way we could afford therapy on our own. So, here we are doing what we said we would never do- pouring over the application for TEFRA. Medicaid for disabled children. I don't like it. I don't like the terminology or the connotation, but I am learning in order to make it on this crazy ride, you have to use what you are given.

Caroline may be "severely delayed" right now, but I have promised her that we will do everything we can to ensure she won't be for long. No matter what, Caroline won't be defined by a diagnosis or disability. She is our mighty girl and will be defined by her infectious laugh, tight hugs, and big kisses.

Sometimes it feels as if life is just tossing you back and forth like a little ship on the high sea. Have you ever been on a boat in a storm? It's scary and unpredictable. I'm all for boating but I want smooth-as-glass waters and sunshine. Being Caroline's mom has been a blessing because it is teaching me how to sail in any weather and put trust in the Captain who knows how to navigate the waves. Now, our family is in the middle of another storm. Josh's dad was recently diagnosed with advanced, Non-Hodgkins Lymphoma. The type he has, follicular, is treatable but not curable, yet. We have been reading and learning a lot in these past 2 weeks about sailing this particular ship. We have learned about bone marrow biopsies, PET scans, and chemotherapy. We don't like it. We hate it, but we know our Captain is good and He will provide the resources we need to sail this ship.

Life can change in a phone call. Never say never. Be kinder than necessary. Love each other hard.

It's All Gonna Be Okay

Now that we have a nice, long surgery break (fingers and toes crossed) it's time to start looking into therapy for Caroline. We are currently in the middle of the evaluation process. It's a strange thing watching your child be evaluated for therapy. On one hand, you know she needs it but on the other you feel a bit of resentment at the thought of someone judging your child. Hello? She's obviously perfect, but yeah we need help. The thing is I know Caroline is delayed- and with all of her surgeries, hospitalizations, and anomalies, she has good reason to be. I also know that I need help teaching her. The first session didn't go so well, meaning that Caroline screamed at her for the first hour. Eventually, she did warm up to the stranger enough to allow her to sit on her play mat, but not too close. I apologized and said, "she just really doesn't like people." After all, most of the time when she meets someone new it is either a doctor or a nurse. I actually found myself apologizing a lot through out the session. I have this aggravating desire to please people. I really want you to like me. I want you to like my child. I want you to approve of me and my parenting. I want to pass all of your tests. Then the other side of Katie says, "don't you dare judge me or my baby." Isn't my mind a scary place? At the slightest frown or furrowed brow of the therapist, my iron wall of defense is up. I knew the first session would be difficult. I had tried to prepare myself for the worst, but it doesn't ease the worries that creep into your mind or the aches your mama heart feels at the sight of real tears rolling down your baby's cheeks. Thankfully, the next therapy evaluation was a success. Not so much because Caroline "passed" her tests, but rather that she passed Caroline's. Although she started out by clinging onto me for dear life, in no time at all she was sitting by the therapist and reaching for her. I thought I might feel a twinge of sadness at Caroline reaching for a stranger, but I didn't. I felt a little hope begin to rise. Hope that she wouldn't always be afraid of people. Hope that she would develop physically, mentally, and socially.

A little hope is empowering. Hope can grow in dark places if you let it, but the thing I have learned is that for hope to grow, I can't focus on the worries and aches. I can't think of the "what-ifs" I have to focus on the "but-hopefullys." Our doctors always told us with Caroline to "hope for the best but prepare for the worst." We soon learned that was an impossible task. Once you start preparing for the worst, it takes us all the place in your heart for any hope.

My dad is a hope-filled person. He is my biggest champion. Remember my Clairee told me to marry a man like my dad? That's because those kind-hearted, soft-spoken, gentle men make the very best husbands and dads. Ever since I was little, my dad was the one I went to when something was wrong. He'd say "have you been cryin'?" and he would take all the time it took to listen and sort out the problem. Then he would say "it's all gonna be okay." That is my dad's mantra. To this day, when any of us has a problem, big or small, we go to Dad. I still need to hear him say, "it's all gonna be okay." Even in those scariest times when I really didn't know if it would be okay, my dad would say it and I would believe it. I truly believe I got the very best dad, I'm sorry. I know most people feel that way, but I really did get the best.

Our family is dealing with some hard stuff right now. We are numb with sadness. Thursday evening when Josh told me the sad news, I began crying and then Caroline saw me and started crying, too. Although that doesn't sound very positive, her therapist assured me she is ahead developmentally in that aspect. She said the most important things we can teach our children are compassion and empathy. She explained if they aren't learned by age 6, then they are never truly learned. So, there you go, even in the midst of grief, He allows a little light to shine through. Last night, I asked the Father, "how do I know it's all gonna be okay?"

"And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as His adopted children, including the new bodies He has promised us. We were given this hope when we were saved…
Can anything ever separate us from Christ's love? Does it mean He no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? No, despite all these things, overwhelming victory is ours through Christ who loved us."
~ Romans 8: 23-24, 35, 37

I know it's all gonna be okay because of this simple truth- Jesus saved me from the very worst. As a Christian, I don't have to prepare for the worst, only wait with eager hope for the very best.