When I Thought She Wasn't Looking...

First of all, how is Thanksgiving next week?

It seems like Andrew was born yesterday, but next week he will be 12 weeks old.
The past 12 weeks have been a time of adjustment for our family. While we are so happy to have Andrew, it has not been easy. Can I just be honest with you? The past 12 weeks have been downright hard. I think I self-righteously assumed that it would be a breeze, given everything we have been through with Caroline. How hard could it possibly be adding a healthy, medically-typical baby to the mix?

Oh, how wrong you were, Katie.

Josh has been working an outage that seems to be never-ending, so I've been the only parent for the majority of the time. While I have a great support system and wonderful family close by to offer a hand, I'm so tired. Somedays it seems there isn't enough coffee to remedy the exhaustion. As a result of this exhaustion, I've been dealing with burn out. Somedays, I feel like I'm really doing a pretty good job at this Mom thing, but honestly, most days I feel like an absolute failure. I forget that these little people are constantly looking to me. Looking for my reactions, my approval, my attention. Here's one example…

Caroline had been battling ear infections, tonsillitis, and other lovely things that come from being around other children and being the friendly hand-holding, neck-hugging child that she is. Whenever Caroline has any drainage at all and starts coughing, you can bet she's going to throw up. Well, one Saturday, I was getting ready for a friend's wedding. I accomplished the feat of showering and fixing my hair while keeping 2 kids happy. Then Caroline starts coughing…

"Aw man!" I muttered as she's throwing up in my hair, down my shirt…you get the picture.
Then later that night, I'm just trying to make it until Josh gets home and 30 minutes before he's scheduled to walk through the door, she has another coughing fit while I'm getting her pi's on her in her room.

(Sigh) "Dang it."

I take Caroline to the kitchen for paper towels. Then as we are walking back to her room, she stops at her door and peeks into her room. She points to the mess, shame painted on her face, and says, "oh no, Caroline. No, no, no…Caroline did that, Mama."

Knife to my heart.

I said, "Oh, Caroline, it isn't your fault. You aren't in trouble."
She brightens and says, "Oh ok. Anroo did it."

That was a painful reminder to be extra-kind, extra-gracious, and extra-patient with my children. They are constantly looking, especially in those moments when I think they aren't looking. That day was hard, but there have also been sweet little gems mixed into the hard days. Like when Andrew is crying and Caroline takes off toward his room and says, "I'm coming, Anroo. It okay buddy." Or when she picks up her baby doll and says, "Come here, sweet girl." Those little things remind me that I'm not always failing. I wonder how much better our world would be if we remembered that people are watching us, even when we think they aren't looking. People watch what you comment on, "like", and share on social media. There's a lot of fear going around and people are watching for your reaction. While I have been impulsive with sharing my opinions, I'm vowing to stop and think about my reactions and the consequences of them. I'm going to choose to be extra-kind, extra-gracious, extra-patient…and of course extra-thankful.

One perk of going to Dallas for all these specialists visits with Caroline is getting to shop at NorthPark. She always has MRI's and Neuro visits scheduled right after Christmas, and even though she will have already opened numerous gifts, her daddy will take her to the Disney store and buy her whatever she asks for because that's the kind of man he is. While they do that, I may run into Peek…if you haven't been you should check it out. It's a really cute children's clothing store, but my favorite thing about it is they give you a printout of various poems and quotes about parenting. Here is one of my favorites…

When you thought I wasn't looking,
I saw you hang up my first painting on the refrigerator,
and I wanted to paint another one.
When you thought I wasn't looking, I saw you feed a stray cat,
and I thought it was good to be kind to animals.
When you thought I wasn't looking,
I saw you make my favorite cake for me,
and I knew that little things are special things.
When you thought I wasn't looking,
I heard you say a prayer, and I believed there is a God I could always talk to.
When you thought I wasn't looking, I felt you kiss me goodnight, and I felt loved.
When you thought I wasn't looking, I saw that you cared,
and I wanted to be everything that I could be.
When you thought I wasn't looking, I LOOKED…
and wanted to say thanks for all the things I saw when you thought I wasn't looking.

-Connie Back

Reminiscing and Rejoicing

On this day…

Facebook likes to resurrect past posts and a lot of times for me they are really inconsequential things. Seriously. Why did I think that was worth posting? Then other times, they stop me in my tracks and knock the wind right out of me.

Last week, Facebook resurrected such a memory from last year. Only 365 days ago, but in ways it seems like a lifetime has passed. I opened the notification and saw a picture of Caroline holding her brand new Minnie Mouse, beaming at her with wonderment. I instantly recognized that moment.

We had just been to Dallas for our first consult with our new neurosurgeon, Dr. Sacco. Last year, I had just met the man who would later save my daughter's life. My first impression? He seemed knowledgable and nice enough, though a bit arrogant, but what good surgeon isn't at least a little aware of his or her abilities? He spent a lot of time with us explaining every detail of her MRI, and confirmed that my intuitions were right. Caroline did indeed have hydrocephalus, and if left untreated, she would suffer permanent brain damage and eventually death. Time was of the essence. The affirmation that my gut had served us well was mixed with feelings of regret for not acting sooner, anger at ACH, and this overwhelming fear  of the impact this would have on Caroline's future.

So what can happen in a year?

Fast-forward 365 days and here we are leaving physical therapy. Caroline walks down the hallway, by herself, out the front door, down the ramp, and holds my hand as we cross the parking lot. That seems pretty normal for a 2 year old, but 365 days ago, Caroline was immobile. She could sit up without support but she couldn't even crawl, let alone walk.

If you have asked me a specific request you could pray about, you know I asked you to pray that Caroline would become a little more independent before Andrew arrives. Well, I am happy to say that Caroline now, for the most part anyway, wants to walk. Until the past 2 months, she could walk but didn't really want to do so. We all know too well the difference between the ability to do something and the desire to actually do something, right? Ahem, like exercise, eating right…for some of us. All I'm saying is come delivery day, I'll need to be living off of cucumbers, pushups, and prayers.
Anyway, your prayers came answered wrapped in a package I was not expecting. God likes to do that though. We make plans and He changes things up a bit. See, this summer has been huge for Caroline and I.  She started going to TLC, the Mother's Day Out program, at First United Methodist Church, and has absolutely thrived. I really didn't plan on enrolling her in anything like that until she was at least 3, but after a lot of prayer and encouragement, I took the plunge. The first day was hard. Caroline cried when I left so I hovered in the hallway, out of her sight, hoping to hear her calm down before I left. No such luck. She seemed to cry harder which in turn made me cry. Not wanting to draw attention to myself, the hugely pregnant, crying woman, I made a quick exit. I got a call from TLC about an hour later. I panicked thinking she was still upset and I needed to come get her right away. Instead, I heard about how great she was doing. Since then, she has not shed a single tear when I've dropped her off. If we even drive by the church, she kicks her legs and squeals with delight, wanting to go to "school." She loves Miss Denise and Miss Kristen and all of the kids in her class. Being there has been the best therapy for her. Seeing people her size doing things like walking, running, talking, has instilled this confidence in herself and her abilities. So, thank you for praying and thank you, TLC, for being the vessel.

We still have a long journey ahead, but we've come a long way in just 1 year. Last week, I met with our early childhood intervention specialist with DHS. She helps coordinate all of Caroline't therapies, and we were both amazed at the progress she has made. We are even able to drop one of the therapies, and it is our goal to drop 2 more by the end of the school year!

 I don't share all of this with you seeking praise, for it is certainly nothing I have done. I share so that you may have confident hope that whatever you may be facing this year, God can turn it around.

"I pray that God, the source of hope, will fill you with joy and peace because you trust in Him. Then you will overflow with confident hope through the power of the Holy Spirit."
-Romans 15:13 

Shaking Fear, Embracing Joy

"So do we fall on our knees here or wait until we get to the car?"

That's the question Josh asked me as soon as we left the maternal fetal medicine specialist's suite. We were standing in front of the elevators still processing everything Dr. Chatelain discussed over the past hour.

For the first time since finding out we were expecting our second child, we felt giddy. We felt those feelings again that we felt early in our pregnancy with Caroline. You know, the normal expectant parent feelings...excitement and anxiety, but mostly happiness and the assurance that everything would be ok. That's how we had felt with Caroline until the level 2 ultrasound. Then, our world changed. This time around, Josh and I were more seasoned. We were excited but mostly guarded. Cautious not to let ourselves be too carefree.

When we started sharing the news that we were expecting again, we received different reactions. Some simply congratulatory and others with a "congratulations, but..." We heard, "aren't you worried something will be wrong with this baby?" or "what are the chances this baby could be born with some of the same issues?" I never knew how to respond to these inquiries. Those words, though probably said from genuine concern, were beyond hurtful. It's a very complicated question to answer. Once you live through a complicated pregnancy marked with uncertainty, you are forever changed. You know what can happen. Gone are the days of blissful ignorance. I have watched my child fight for her life and handed her over to surgeons' hands 13 times....and yet, Caroline is more than worth all of the tears and heartache my family has endured. I certainly don't want to go through it again, but I know that He is able and we are able. Caroline is the very best thing that has happened to me. She is my greatest adventure, so I knew that even if we were asked to walk this journey again, we could do it. Each and every life is valuable, not just the "easy" ones.

That being said, we were extremely thankful to hear Dr. Chatelain's report of our baby. I was dreading this ultrasound- the big level 2- the same one where we learned of Caroline's issues. I hadn't experienced a "normal" one before. When he began, I had my eyes shut, tightly clutching a rosary in my hands, rubbing each bead with anxiety. He said, "I'm going to do my best to put your mind at ease." He went through each and every part of our child's anatomy reassuring us along the way. I finally opened my eyes and saw him kicking his feet. Dr. Chatelain described everything in detail. "Those feet are about an inch long- and I see 5 toes on each one." He showed us several angles of his lips and palate. I couldn't fathom a child not having a cleft. He said, "See? There's his lips and nose- I see 2 perfectly formed nostrils." I looked at him incredulously. "I promise." He checked his heart closely and reassured us everything was perfect. Lastly, we aksed him to measure his lateral ventricles in his brain. I don't think he gets many specific requests like that but he understood our concerns. He measured and assured us and finally had to let us know he was finished with his assessment. I kept laying on the bed for awhile. How could it be that straightforward? How could it be so easy? He offered to see me again at 20 weeks for another check and I jumped at that.

After calling our parents, we went to the car and poured over the pictures of our son...Andrew Davis Coffman.

"The Lord replied, 'I will personally go with you, and I will give you rest-everything will be fine for you.' " 

-Exodus 33:14

Immeasuarbly More...

Happy Easter to our prayer warriors and fellow sojourners!  Typically, on holidays, I think back to last year. What were we doing last Easter? What did we eat? What did we wear? Today I was thinking and I couldn't remember the sermon from last year or our Easter lunch. Then, it hit me. Last Easter, we were travelling to Dallas to meet our new team of specialists. We were scared, entering new territory, entrusting our daughter's life to new hands. I kept thinking, "God, how are we going to do this?" He asked us to follow Him and He proved Himself more than able.

So, when I think about how to describe the past few months, I think about His goodness, His faithfulness, and His ability to do immeasurably more than we could ask or imagine.


The past few months have been filled with moments of open-mouthed, wide-eyed, fall-to-your-knees kind of shock...but the good kind of shock. I'm not really one for surprises, normally. I like to plan and feel that I actually in control of everything.

Then God throws His head back and laughs and laughs...

First things first, we traveled back to Dallas in December for post-op visits and an MRI. Some of the planned things happened, and the rest? Well, Caroline had other plans in mind.

We met with our craniofacial surgeon, Dr. Fearon to discuss her progress after surgery. During that surgery, they had access to plenty of her blood, so he ran some genetic tests to determine if she has an underlying genetic mutation or syndrome that all the other genetic tests had missed. Once we sat down in his office he looked at me and said, "OK first I want to let you know I have the results of her genetic tests..."

I braced myself. I sat up straighter and actually tightened my stomach muscles as if preparing for a soccer ball to come sailing and knock the wind out of me.

"And they are all negative."

I was shocked. See, even though all of Caroline's previous genetic testing from UAMS and ACH came back negative, I was still worried. The geneticists at ACH told me they were pretty sure she had something linking all of her anomalies. So I sat speechless for a moment and tried to regroup. All I could muster was a whispered "Really?"

I was just sure he was going to say, "sorry but your daughter has..."

So, Caroline is genetically "normal." Normal is a pretty nice word to hear. I thought at the time, "I could really get used to hearing that word."

Well, at our neuro follow-up, MRI, and ophthalmology consult in January, we got to hear that word a few more times.

Here we are getting ready for the MRI. This is MRI-take 2, the redo of the "planned" one in December. Turns out that one was ordered without sedation and Caroline let us know pretty quickly that was not happening. So, here we are getting ready for the MRI with sedation.

After the MRI, we headed to Dr. Sacco's office to discuss the results. Since she has a programmable VP shunt and recently had cranial surgery, he wanted to be sure her shunt was at the proper setting. First, he showed us pictures of previous MRI's compared to this MRI. The differences were astounding. Finally, Caroline's lateral ventricles are almost a "normal" size. Also, we were once told that Caroline had less white matter than the average person, but Dr. Sacco explained it only appeared that way in images due to her untreated hydrocephalus and cranial pressure. So, now that her pressure is decreasing and the hydrocephalus is being managed, her brain actually looks "pretty normal." At one time we were told her corpus callosum was thin, but in Dr. Sacco's words it now looks normal. It is amazing what can happen when you finally find the right specialists.

The next day we met Dr. Lefler, our new ophthalmologist. He did a very thorough exam and concluded that Caroline's vision is perfectly normal. At one time we were told her right eye had a "drift." I don't know if it is due to her hydrocephalus finally getting under control or what, but now everything is "normal."

Obviously, this trip brought unexpected, wonderful news that made us feel indescribable thankfulness. This overwhelming thankfulness and relief was magnified by the fact that a couple of weeks prior, we discovered we were expecting baby #2. I kept thinking, "God, how are we going to do this?" We arrived in Dallas a day before our MRI and appointments and in between bouts of morning sickness, which seriously should be renamed "all day sickness" for accuracy, I cried and said to Josh, "I don't know how we are going to manage." Then, with each bit of good news and every time we heard, "normal" a little of the worry was lifted from our shoulders. It was like a little nudge from God saying, "See, I'm faithful. I'm good. I've got you."

Easter has come again. This year, we got to be home with our church and our families. We have proclaimed He is risen. We have been reminded of the promise of the resurrection and the hope of Heaven. Once again. we have another big appointment the day after Easter. This year, for baby #2. Tomorrow we will travel to Little Rock for a level 2 ultrasound and fetal echo to see how this baby is doing. I don't have happy memories of ultrasounds, so I've been feeling those worries and fears start to settle on my shoulders again. Easter reminds us though of the power God holds. He endured agony and death, but no grave could keep Him from His promise of rising. I don't know what tomorrow holds, but I know God is big. He is faithful. He is with us. I look at what He has done in Caroline's life. Not even 2 years, but He has shown us His glory. He is indeed able to do immeasurably more...

"Now to Him who is able to do immeasurably more than all we could ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."

~ Ephesians 3:20-21

Don't Forget to Breathe...and Pray

"Don't forget to breathe!" says a cheery, legwarmer-clad, poufy-haired Jane Fonda. I'm 11 years old in my parents' old house doing my mom's 1980's Jane VHS tape and that part always made me laugh. Now, don't get me wrong, her workouts, while not exactly in the same category as Insanity and other forms of torture, are in fact, no joke. However, she says this as we are laying on the floor lifting our legs. I always thought, "what kind of idiot forgets to breathe?"

Fast-forward almost 20 years and I am that idiot. As it turns out, I haven't been doing much real breathing for awhile now. Physically, no I haven't stopped breathing. That would be bad. I'm talking those deep mental, spiritual, emotional breaths...those I have been forgetting lately. I have the bill from our local ER to prove it. The chest pain turned out to be just a scare, but one I needed. The nurse looks me over and asks if I have had any stresses lately. I start giggling and then crying as her eyes widen. Let's see...Caroline just had her 13th surgery and still doesn't want to eat or sleep, so yeah, there's a little stress in our home. At this point I was still sitting in the chair beside the hospital bed, because that's my default spot. The mom seat. Then she makes me lie on the bed and "relax" while they order tests. I begin to take a few deep breaths in an effort to "relax" and try to drown out the drunk guy next door crying because the nurse told him they would have to "stick him" for bloodwork. I used to be a very compassionate person and then I had a child with medical complexities. If you are that scared of needles, don't get drunk at 3 in the afternoon and get in a fight and come to the ER. It's pretty simple. Anyway, as I took those deep breaths I thought, "man, I forgot how good this feels."

Try it. Right now. Take 3 deep breaths.

Inhale....
Exhale...

Inhale...
Exhale...

Inhale...
Exhale...

Last night I was lying in bed consumed with resentment, anger, frustration. Not at Caroline, just at life in general, and if I'm being honest, at God. I had been on the phone with therapists until 10:30pm- which if you know me is like 1 am for most people. I am truly thankful for these wonderful women who are helping Caroline (and me) but sometimes I feel resentful that my child needs therapy while healthy babies are born to seemingly perfect families everyday.
So, as the anger tries to overtake me, I take a deep breath. Then, I was reminded of something I learned in college. A practice I had not practiced in a long time. Gregg Taylor was the director of the Wesley Foundation at the University of Arkansas during my time there and I was blessed to get to know him and his precious wife, Amy, who invited students into their home every week for bible study. One night he taught us "Breath Prayers." It is a very simple prayer. A single sentence you utter to God as you take a deep breath.

I lied in bed last night and inhaled
"God take away my anger"
and exhaled
"Give me peace"

So simple and yet so powerful. The next time you feel overwhelmed with anger at a coworker who is a gossiping, busybody out for your job...inhale and exhale. Pray for clarity and peace.
The next time you find yourself in the middle of a feud...inhale and exhale. Pray for discernment.
When you are overwhelmed with sadness because it's the holidays and you are missing your mama so much...inhale and exhale. Pray for joy.

Don't forget to breathe, loved one.

Girl got her prayer hands ready.

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."