A Perfect Imperfection

Here we are 10 days until Christmas Eve. Have I sent out personalized Christmas cards? No. Have I bought a "Baby's 1st Christmas" ornament? Nope. Surely, we have made the short trek to the city mall to meet Santa, right? Wrong. In many ways, it seems I have failed at this "1st Christmas" thing. Then, I reflect on the past year, and my perspective changes. In many ways, I did think this Christmas would be different, but not in the way you might imagine. Reflect with me for a moment…

December 16th, 2013, our world was forever changed. It was on this date that we boarded this  crazy roller coaster ride. This was the day we had our level 2 ultrasound, which for most, is simply the big-exciting-gender-reveal ultrasound. We did learn we were having a "Caroline" instead of a "Connor" but we also learned much more than we ever wanted. Our world was introduced to a new vocabulary of medical terms like, "ventriculomegaly," "trisomy", and "cavum septum pellucidum." I declined the amniocentesis that the OB strongly urged that day but opted for blood work to hopefully rule out trisomies 13, 18 (usually fatal) and 21 (Down Syndrome.) Unfortunately, it would be weeks before we would learn the results with the upcoming holidays and all. So, needless to say last Christmas was a pretty gloomy one. Grief entered our home and settled everywhere like leftover tinsel glitter in carpet. You ain't getting that stuff up- it's like it fuses with each individual fiber. Even though we didn't have a definite diagnosis or prognosis, we grieved for our child and we grieved for our dreams for our child. Whether we want to admit to it or not, every parent has expectations for their child's life. You expect her to learn to read, write, ride a bike, play an instrument, and on and on it goes. So, I buried each expectation for her and mourned. How I mourned, but we made it through Christmas and we learned our girl did not have any of the 3 trisomies tested. While this was a huge victory, we still had months of ultrasounds and uncertainty. The doctors, nurses, and genetic counselors gave us bleak outlooks. Although we still don't know if Caroline will excel at ballet, piano, or geometry, we know she has overcome every obstacle placed in her path. She has defied the doctor's bleak outlooks and small expectations. Caroline has not only survived, but she has thrived and now, this December 16th, we have another climb.

This Tuesday, she will be having her first lip and nose repair. This surgery is typically done at 3 months of age, but unfortunately, she had other issues that needed to be surgically corrected first. When people ask about Caroline, and I tell them about this surgery, the typical response is "Oh, won't you be so glad to get that done?" While that would seem the logical outlook, I am actually not at all looking forward to it and, no, in fact I do not feel glad to "get that done." As hard as it may be to imagine, I think my daughter is perfect and I will actually miss her cleft. Yes, I will miss what most see as a flaw or imperfection. Then I hear "but she will look better." Ah, but as her mama, it is not possible for me to see it that way. Since she will always be perfect to me, "better" is not possible. It will be different and I know as she gets older, Caroline will definitely see the repair as "better." As I know this surgery is inevitable, I will certainly be glad to get it behind us. This will probably be the most difficult thus far, in regards to discomfort and recovery. So, if you don't mind, can I ask you to pray once again for our sweet Caroline? If you would like specifics, please pray for an easy IV stick. Poor thing takes after her mama and has gummy worm veins. So, we are lucky if she comes out of surgery with only 10 pricks on her arms, legs, and hands. Please pray she will be able to eat afterwards. She will be fed with a syringe or spoon for about 2 weeks after surgery. Please pray that she will be able to resist sticking her hands in her mouth. Since her lips and nose will be swollen and packed, the doctors don't want her putting anything in her mouth. Miss Caroline likes to suck her thumb and twirl her hair with the other hand so this may be a bit of a challenge.

This week,  I have been taking more pictures, pouring over photos, and simply gazing at my baby more. I want to commit this beautiful, wide, imperfect-to-the-world-but-perfect-to-me smile, to memory. I never want to forget the smile God formed. If you are my Facebook friend, I am sorry I have been blowing up your newsfeed lately but in the words of my husband, "if they don't like it, it's called 'unfollow!' "

Who can turn the world on with her smile?

Who can take a nothing day, and suddenly make it all seem worthwhile?

Well, it's you girl, and you should know it!

With each glance and every little movement, you show it!

Love is all around, no need to waste it. You can have a town, why don't you take it?

You're gonna make it after all

You're gonna make it after all… You're gonna make it after all…

So, while this Christmas certainly hasn't been the typical "baby's 1st Christmas," it has been wonderful in comparison to last year. It's all about perspective. I do think it an odd coincidence that for two years, December 16th has been such an important date. In Bible study, we have been studying Moses. Apparently, the Tabernacle was set up exactly one year after God announced He would pass over the Israelites. I got chill bumps and realized that December 16th is our family's Passover. Even though the threat of death hung over us, she is still here. Even though we were warned she may not have any quality of life, she is living fully and loving every minute, well when she isn't crying anyway. This date is one of remembrance of all God has done even when it seemed impossible. So, although I am not looking forward to this December 16th, I have assurance and hope that He is going to see us through this next climb and bring us safely to the other side. Thank you for praying. Thank you for listening. Thank you for loving. Merry Christmas to you and yours. Now, where is the Tylenol and Chardonnay?

Fixing Our Gaze

Yesterday was a day I had been dreading for awhile. Some of it had to do with my own personal fears. I really, really, really hate going to the eye doctor. I would rather go to the dentist than the eye doctor. Heck, I would rather hang out at a craft fair all day than go to the eye doctor. And not the kind of craft fair where you say "wow that's amazing! I wish I could make that!" but the kind where every booth is packed with the "wow I never realized you could make so many useless, crappy things from an old paper towel roll" kind of "crafts." Those who know me well understand the seriousness of the situation. The problem is, as the mama, I have to be the brave, responsible one. I'm supposed to be the one who stays calm, listens objectively, and speaks, um calmly, with the provider about her care plan. So, yeah, it didn't exactly go down that way.

Here we are on our way to ACH (our home away from home.) Doesn't she look thrilled?

So why does a 6-month old need to see an opthamologist anyway? Here's a little backstory. During our NICU stay, Caroline had about 3 MRI's. (It took 3 tries to finally get a good picture.) The main reasoning behind them was to check her ventriculomegaly to try and determine the cause and severity. The funny thing is the craniosynostsosis, thought to be the cause, didn't show up on the MRI's. This was found later on the CT scan which was done to check the severity of her choanal atresia. Whew! Still with me? Anyway, while the MRI didn't give us any answers regarding the ventriculomegaly, it did seem to show her optic nerves were a little on the small side. So, we have 2 different opthamologists visit us in our NICU room to take a look at the optic nerves. They felt they were "normal" albeit the small side of normal. They tell us to watch for any random eye movements and follow-up in a few months in their clinic. Fast forward 5 months and here we are. 

During the past 5 months, we had been watching her eyes and hadn't noticed the random movements the opthamologists had described; however, we noticed since she was in the NICU, that one of her eyes  tended to drift occasionally. Since the cranial surgery, we hadn't noticed it as much and actually felt her focus and overall vision had improved greatly. This was another reason for my anxiousness about this appointment. Even though I saw improvements, I still had this gut feeling that something wasn't quite right. 

We met with an opthamology tech first who checked Caroline's tracking and seemed very pleased. Then we met with another pleasant lady who checked Caroline's visual acuity. If you're like me, you're thinking "how the heck do you check a baby's vision?" Well, this lady had several large posters. These were mainly blank but each one had a small square with a black and white striped pattern.  She would hold them up and see if Caroline's eyes went immediately toward the pattern. I held Caroline while Josh sat behind the poster lady. I couldn't see what Caroline was looking at but just prayed she was doing well and looked at Josh for confirmation. They clapped and cheered for her after each one and Caroline ate it up. She was extremely pleased with Caroline's performance. Then, we finally got to move to a real exam room. Next door we could hear the doctor talking to another family. We weren't meaning to listen, but why are walls in medical offices paper thin? Anyway, we heard words like "eye patches" and "surgery." Josh said "well, at least we aren't dealing with that." Me, being the cynic said "well, hopefully not anyway." Then, the doctor comes in and does a quick exam. She said Caroline's left eye seems to "drift." Now it's our turn to hear "eye patches" and "surgery." At this point, I am literally on the edge of my seat, explaining to the doctor that Caroline has quite a few things on her plate right now and we aren't exactly planning on yet another surgery. I can see the look of realization spread across this doctor's face because it's one I have had with my patients…it's the "ohhh this mama is cuh-razy and I better tread lightly." She backs up a little and looks at Josh. He, being Josh, looks at me, then turns to the doctor and calmly and intelligibly explains we are willing to do what we need to do to give her the best chance but are feeling a little overwhelmed. She then says she needs to dilate her eyes and check for glasses prescription, etc. So, she leaves the room and we wait again. During our wait, I would love to tell you I was praying and just thanking Him for the good news that her acuity is good and all that mess…but I need to be honest. Do you want to know what came out of my mouth as soon as she left the room? Bad words. Bad, bad words. If you read this and say "Wow, Katie has issues and must need prayer" then yes, thank you, I do have issues and need prayer. If you think I'm a terrible person and we can't be friends, then I reckon I can live with that. We were looking forward to having our palate surgery in February and then being done with surgeries for a few years, and now she has to have yet another unplanned surgery? We are still trying to get her adjusted to the helmet and now she has to wear an eye patch? When the doctor came back, I could tell she was trying extra hard to be kind and in return, I tried not to bite her head off. We agreed to try the eye patch therapy- wearing a patch 2 hours a day, alternating eyes each day. In addition, we will be preparing for eye surgery, which will likely take place next spring, after our other surgeries. Though I was feeling pretty down about our visit at this point, the doctor checked and said her optic nerves actually looked great and not small in the slightest. Thank You, God. Another miracle, she doesn't need glasses and actually her overall vision is way above average for a baby her age. As we were leaving, we passed the oncology clinic. I was reminded that no matter what, it could be worse. I know it could be worse, but can I be honest with you? I'm still tired. I look forward to the day when we can see a specialist and hear her say, "there's nothing wrong." So, to sum it up, we had unexpected news, both good and bad, but if the past few months have taught us anything, it's that you always have to expect the unexpected. In true Caroline fashion, she's an overcomer and we know she will overcome this new battle, too. 

A trip to the gift shop for something special has become a tradition. We got a Llama Llama book and toy because sometimes, after a long day, you just need a snuggle. 

A Little Gratitude

Our sweet Caroline is officially 6 months old. When I state that fact I get 2 different reactions from people… "Wow 6 months already?!" or "Wow, has it only been 6 months?!"

The funny thing is, I feel both of those sentiments simultaneously. In some ways, these months have absolutely dragged. Those moments when she can't breathe because the awful monster they call GERD is attacking and I keep saying to myself, "it will get better after 6 months," yeah, those are the times I plead for the days to pass quickly. Then, we experience those sweet moments when my baby is trying to have a conversation with me. She babbles, coos, and sings and then reaches up and pulls my face closer to make sure I'm listening to her every word. It is in those moments I pray for time to slow down.   The 5th month was like that- full of ups and downs. This was the first month of her life that she hasn't had a single surgery. Shouldn't that be a huge victory? Instead, I tend to focus on the negatives. This last  month brought out some real ugliness in me. I don't like to admit this truth, but it made me wonder, "what is my life reflecting?"

One afternoon, we were desperately, and unsuccessfully, trying to get Caroline to take a nap. Normal baby stuff. This was one of the first days in the helmet and she was determined not to sleep in the contraption. In an attempt to soothe her, Josh got out her little stuffed lamb that plays music. "Jesus Loves Me" started up and I fixed my eyes on the floor. Josh read my thoughts and said quietly over her whimpering, "He does love her." I believe He does, but sometimes it's easy for me to get so caught up in the difficult moments and forget truth. In that moment, I was choosing to dwell on the bad. The thing is, I want Caroline to believe without a doubt that she is loved, cherished, perfect, worthy, strong, and able to do absolutely anything. How will she believe unless I believe too? Mostly, I don't want to become so fixated on the challenges that they become her identity. I don't want her to be the poster child for special needs and I certainly have no business being the poster-special-needs-mama. I don't want people to see her and think, "oh she is doing great…for her condition" or "she looks so cute…for having those issues." I want them to see Caroline for who she is- a funny, bright, loving, beautiful, formed-in-His-image girl. My hope for Caroline and our whole family is that our lives would not reflect  the hardships, but that they would reflect gratitude, joy, and grace.

November is all about thankfulness, so to kick off the month, how about a photo summary of just a few of the things that I am so very thankful for this year?

These two. I love them. 

Sunrises…and new mercies that come with them. 

Our furry babysitter. 

This smile to greet me each morning. 

This unyielding spirit. 

Furry babies…and the start of holiday season. 

This excited little strawberry and the man behind her. 

Meme. We love her. 

Birthdays. Yesterday was my brother's birthday. He was my first friend and he's pretty darn special. 

The Speed Bumps to Joy

We are already over halfway through October and once again, I have been slacking on updating all of you fellow riders. The lack of updates isn't due to lack of events. On the contrary, so much has happened that it's an overwhelming task to decide where to begin. Unfortunately, I haven't been in the right frame of mind to share lately. If I am going to truly embrace transparency, I have to say I haven't been choosing joy, but rather anger. We have had a few halts and mechanical failures in the ride. When these setbacks happen, I immediately revert back to feeling frustrated and questioning God. Why Caroline? Why does she have to face this now? Why are we dealing with this one, incredibly difficult person at Children's? So many questions, and I will never ever understand why. Much like Job, I have thrown my hands up in anger and asked why He has allowed this. When we feel like we are going steady on the ride, it suddenly stops, and sometimes even goes in reverse. Then, God laid it out for me. I'm not meant to understand why, but I am called to trust in who He is and His promises. The thing about trust is it has to be tested and exercised in order to grow and boy, has it been a trying month. 

So, remember back about 6 weeks ago, Caroline had her cranial surgery to open the fused suture? Well, after this particular procedure, she was supposed to wear a molding helmet to help ensure her skull and brain grow normally. It was initially made imperative that she wear the helmet immediately after surgery. Great, let's get this helmet-wearing started and get on track again. Not so fast. They wanted to measure her head again after surgery before ordering the helmet. Fine. We measure the week after surgery, wait 2 weeks for it to be delivered, and the helmet is completely wrong. It doesn't fit. It's not even the right type- oh yes, there are numerous types of helmets for babies. Who knew? So when I say it doesn't fit, I don't mean it was a little uncomfortable. We were prepared that it would be an adjustment period for all of us. We couldn't put it on her head without a screaming fest that ended with all of us in tears. Even though our friend, Helmet Guy, kept insisting it was right and we would "just have to get used to it" I was not satisfied. So, we set up an appointment with the neurosurgeon and he agreed the helmet was not correct and asked us to go back to orthotics and ask for a new helmet. I was happy that someone finally agreed with me but also dreading the confrontation that was about to take place. I said to nurse Lea, "um, he isn't going to want to see us." She peered at me over her glasses and said, "I don't really care what he wants. This is about what is best for Caroline." Nurse Lea don't play around. 

Here we are getting measured yet again for a helmet. This time she didn't cry at all but she didn't take her eyes off of Helmet Guy

This process has been such a learning curve for me. I joke that I used to be a nice person before I became a mom. Every mom has to learn how to fight for her child, but throw in special needs, surgeries, appointments, and you become a gladiator. Thankfully, I have a husband and parents who are willing to battle right alongside me. I was talking to a wise lady last week about advocating for your child. I said it's a fine line. You want to be Christ-like but you also have to be aggressive. She said to me, "Katie, how many battles has He fought for you? Remember, this is the same God who sent locusts and turned people into pillars of salt." Hey, that's right, and I believe Jesus did flip tables and whooped some people too. Well, y'all will be proud to know I didn't flip anyone's desk over on them or whoop them either. After a few mild confrontations and a month later, we finally have the correct helmet. This is only our third full day and we have 10 days to work up to wearing it for 23 hours a day. I was prepared for crying and fussing but I'm happy to report that so far, this time, the helmet-wearing has been pretty uneventful. Would you please pray that Caroline will continue to amaze with her great ability to adapt? Even though she is trying to adjust to this new contraption on her little head, she is choosing joy. She is still smiling, laughing, and playing. She reminds me that this setback doesn't have to rule our lives. It is so easy to let discouragement work its way into your heart, but we are confident that God can use this setback for our good. I will never understand why but I know He is good and He is able to do immeasurably more than we could ever imagine. I am hopeful that years from now, we will be able to look back on these helmet days and realize her complete healing came only from Him. 

The amazing Caroline rockin' the new accessory. She's our super hero. 

The Great Swap

Happy October! My, it's been too long, but the past few weeks have been a little crazy around here. Caroline has so much to share with you, but for today, a little explanation of where we have been.

For the past 2 weeks, we have been experiencing the joys of packing all of our junk into boxes only to transport said junk 2 miles to unpack and find new places to stash the junk. I don't particularly care for moving but we did it so many times growing up that it would feel unusual for me to settle somewhere for too long. Josh, on the other hand, is not a mover. Until leaving home for grad school, he had lived in the same house for 20 years. 20 years! I cannot wrap my nomadic brain around that. Anyway, what makes this move extra "fun" is the fact that we are moving 2 houses at once. As we say around these parts, "Now do what?" Let me start at the beginning. So, last summer, we "swapped" houses with my brother and sister-in-law. Yes, we swapped houses. With family. My husband, being the gem that he is, thought it was crazy but he went along with it because well, he's just wonderful like that. Now fast forward 14 months to a typical Tuesday evening. Josh enters the kitchen after a long day at work. I say probably a bit too excitedly, "Hey! How was your day?" You know when you are anxious to say something so you try to act "normal" and it comes across as anything but "normal?" Yeah that was me. Josh just looks at me and says "it was ok…" Before he can say anything else I blurt, "so what do you think about swapping houses again?" He looks at me, sighs because he knows me, and says, "whatever you want to do darlin.' My home is wherever you and Punky are." Aww, didn't I tell you he was a gem? So why did we swap houses…twice? Well, I have wracked my brain and the only explanation I can come up with is that we are crazy. You know that saying, "the grass is greener on the other side?" Well that all depends on who is watering it.

So here we are, back in our old home. The good thing about moving back into a place you have lived before is you kind of already know where to put all of your junk. Now, the best part about moving is my mom is a pro at packing and unpacking. She and my dad have moved about 30 times over the course of their 37-year marriage. Wednesday, my dad and I took Caroline to her check-up and my mom was able to get her room all set-up, including organizing and labeling drawers and baskets. Oh and in her spare time managed to do 5 loads of laundry and rearrange furniture. She is probably the hardest-working and most efficient lady you would ever meet. She is always rearranging furniture- and my mom is a petite lady. We all marvel at her super-human strength when it comes to decorating. Once when asked how she did it, she shrugged and said, "I guess because I wanted to."

Here is a glimpse of Caroline's room… more (and hopefully better) pictures to come.

See the tags on the drawers? A hint to me to not just impatiently shove clothes haphazardly into them. The painting is an original Beth Whitlow, affectionately known around here as "Aunt Cookie." 

The organization of it all just makes my heart skip a beat. Seeing it took me back to being young and living at home. When my room just got totally out of control messy, my mom would spend a day cleaning and organizing every single thing. I mean there would be a tiny box in a cleaned-out junk drawer for the sole purpose of holding bobby pins. I would come home from school and be so happy and excited for a clean, organized room. So I love organization but not so much the work that goes into organizing. I am thankful for a mom who loves to organize and shows her love with her actions. She loves her kids and loves to help in anyway she can- particularly if it means she gets to organize and decorate.

Even though the past few weeks have been crazy and stressful, I am really lucky to have these wonderful people in my life who love me and embrace the craziness. My husband, parents, brothers, sisters, they are all on board this crazy ride and they make it bearable.

Small Victories

It's been a week since our last visit. I have been so wanting to tell you about our life after surgery but until now, I just haven't had enough time to reflect. Basically, I cannot believe how well Caroline has done. This recovery has been much easier than our previous surgeries, and for that we are so very thankful. We have seen a noticeable difference in her. Firstly, she is happier. Caroline has always been a pretty happy baby, especially considering all of her obstacles, but there were moments each day when she was downright inconsolable. We had wondered if the increased pressure from the craniosynostosis was causing headaches- and now we know. She smiles more. She laughs more. She dances more. Secondly, along with feeling better and happier, Punky has decided she is now a chatterbox. Before surgery, she would mimic sounds a few times throughout the day- which, in our somewhat completely biased eyes, was advanced for a 3-month old. Now, she won't stop talking. She not only mimics our sounds but has discovered quite a few of her own. Thirdly, she can see better. Punky's type of craniosynostsosis, right coronal, affected the development of the right frontal and parietal bones in her skull. In other words, the left side of her skull was free to grow while the right was restricted. So, her left eye is in a "normal" position while her right eye is recessed. She had really adapted well considering this major setback. She would try so hard to focus on and track you with both eyes but it was extremely difficult. To our surprise, though the right side of her skull is still recessed, she is already able to focus her eyes more easily. Though one pediatrician told us the surgery was mainly a cosmetic procedure, to help her look more "normal" we know that is not the case. I cringe when I hear other cranio parents say their first doctor told them surgery was "optional" or "cosmetic." If you are a parent facing a new craniosynostosis diagnosis, please do not let anyone tell you the surgery isn't worth it. Whether it be the endoscopic or more traditional procedure, surgery is necessary for not just physical reasons, but more importantly, for proper mental development. We are so encouraged by all of these positive signs just one week after surgery- and we haven't even started helmet therapy! These are all seemingly small things. Babies smile, laugh, dance, babble, and gaze all the time. So what makes my girl so extraordinary? These are all signs that there is a big, intelligent, loving personality in my baby…something the OB's, genetic counselors, and neonatologists suggested may not be. Are there still unknowns? Only too many to count, but the knowns make this all seem possible. We know He is faithful and we know she is here to prove it.

She says it's no "Shake It Off" but felt the title was appropriate. 

A Little Bit of Faith...

We have officially made it to the "other side" of cranial surgery. We know this ride is far from over, but if the past few days have taught us anything it's that nothing is too big for God.

Wednesday night, we were trying to get Caroline settled so we could all get a little sleep before our 3am wakeup. I don't know if it was just the excitement of being in a new place, but she was wound up. Papa's RV is pretty cool. I know what you are thinking, it was the party lights and the Taylor Swift dance party that got her. Anyway, we decided to prop her up on our bed to see if the dark, coziness would inspire sleep. With Josh and I kneeling on either side of her I looked across at Josh and asked him to pray. We each offered her a finger and she grabbed on tightly. I can't remember the words he spoke only the emotion I felt. I have never known Romans 8:26 to be more applicable than in the past few months of our life.

" And the Holy Spirit helps us in our weakness. For example, we don't know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words."

Thursday morning came too soon, but strangely, I felt peace. Caroline was in a great mood which made the wait so much easier. It is very difficult to describe everything we felt during those hours before, during, and after surgery, so I thought I would let our pictures tell some of the story. 

Here she is in the pre-op room. That smile melts my heart. "Cranial surgery? Pffft! Big deal!"

Usually, Caroline wants to be held, especially when we are in a strange place, but that particular morning she actually wanted to lay on the hospital bed. Here is our brave girl trying to reassure me. 

Here I am trying to tell her that it's going to be OK and here she is telling me, "Mom! I got this!"

After all of the doctors made their rounds, they were finally ready to start. I guess it isn't quite fair to say "finally" as it was only about an hour and a half wait in pre-op, but as a parent, it feels like an eternity. Then, the nurse came to take Caroline back. She was still laying in that hospital bed- looking so tiny and fragile- smiling and cooing. I gave her a quick kiss and told her I loved her- my standard before surgery. If I pick her up, it's just too hard to let go. The nurse said , "you good, Mom?" I was about as far from "good" as possible but I nodded and left the room. Josh followed right behind, "come on, let's get out of here before she starts crying." That probably sounds a bit harsh, but if you have experienced this, then you understand. I glanced over my shoulder to get one last look at my baby wheeling towards the operating room. "Just a few more hours" I told myself. We joined my parents and Josh's dad in the surgery waiting room. 

While in pre-op, the surgeons told us Caroline would probably be in the operating room for 4-6 hours. They told us she would go straight to the pediatric intensive care unit. They told us she may need a blood transfusion (remember our enjoyable trip to the Red Cross?). Well, happily, none of those predictions came to pass. We anxiously sat in the waiting room wondering how our brave girl was doing. Then, about 3 hours after leaving her with the nurse, the surgeons walked into the waiting room beaming. The procedure went "great." It was a "success." Our girl was "fantastic." I let out a huge sigh of relief. Then, her surgeon said she would not need to go to the PICU. What? Not only could she go straight to the neuroscience unit, but she would probably only need to stay one night. What? How was that possible? We expected to be spending at least 3 nights in the hospital. Oh, and she had minimal blood loss so no transfusions were needed. What? Her doctors seemed equally surprised. About 30 minutes after visiting with her doctors, we were given the "OK" to go back to recovery to see our warrior baby.

Thank You, Jesus.

Josh and I took turns taking pictures of her. I looked up at her nurse and explained apologetically that it probably seemed strange, but we wanted to document every event, good and bad. She nodded and said her oldest child had spent several weeks in the NICU, so her baby book looked a little different, too. After a couple of hours in recovery, we headed to the neuroscience unit. Neuroscience. That's a scary word. I wasn't altogether thrilled at the thought of my baby being in that unit, but we were met with compassion from wonderful nurses. Each time Caroline cried, a nurse was quick to respond asking what she could do to help. One nurse in particular showed an unexpected level of kindness. Caroline woke up at 3am to eat. I had to go to the lactation room in the PICU to pump so I left with Josh giving her a bottle. On the way back to her room, I passed the nurses' desk and her nurse called after me, "she started crying when you left so I sang to her." I stopped. I turned to look at her. "She stopped crying, probably because my singing is so bad and she just wanted me to stop," she laughed nervously. I swallowed the lump in my throat and said quietly, "No. She loves to be sung to. Thank you." That nurse probably had pages of charting to do, but she took time to comfort my daughter in my absence. 

Finally getting to hold my baby the next morning.

Amazingly enough, we got to come home just 24 hours after cranial surgery. I am still in awe of how well she has done. The days leading up to and since surgery, our family has been overwhelmed by the outpouring of love, support, and prayers from all of you. You are such a vital part of this ride. I want to  just take a moment to say thank you for praying faithfully for Caroline and our family. When I was at a loss for words to pray, you prayed them for me. Thank you.  To my parents, thank you for being right by our side through every single twist and turn of the ride. You have shown us what the unconditional love of a parent looks like. To my brothers and sisters-in-law, thank you for taking care of our house and dogs in our absences. You know how it has pained me to be away from our furry babies. Thank you for praying for and encouraging us. Beth, thank you for pinning funny stuff on our Pinterest board so I could laugh even during some of the saddest moments. To my in-laws, thank you for providing meals the first 2 nights home. Thank you for praying for us and loving us unconditionally. To nurse Karen, thank you for singing to my daughter. Thank you to our church for showing us what being a part of the Body of Christ really means. Thank you new, sweet friends, Brandon and Vicky for visiting us at the hospital. Thank you fellow sojourners. Through your acts of kindness and your words of encouragement, we have seen God's provision. 

The next few months will be busy, filled with clinic appointments. She will undergo several tests to evaluate her mental development and helmet fittings to ensure her head develops and shapes normally. If I'm honest, I tend to focus on the potential issues we may face and I quickly become consumed with worry.  Then, I am reminded of the amazing things we have witnessed the past few days. Truly, nothing is too hard for Him. 

Matt Foley, Taylor Swift, and Jesus

Here we are. The night before the big surgery. The countdown has shifted from days to hours. Remember I said this feels like being on Big Thunder Mountain? Maybe because that's the only actual roller coaster I've ever ridden. I really hate roller coasters. Did I mention that? I'm not a thrill seeker by any stretch of the imagination. I'm more of a spinning tea cups kinda girl. Anyway, I'm imagining being back in that little rail car climbing up the first steep slope. Now we are so close to the pinnacle, we are slowly tick, tick, ticking by the inch. We know the drop is coming. There's no turning back. All we can do is hold on tight and pray the next few days fly by. I guess that's the good thing about the drop. Compared to the slow, agonizing climb, the drop is scary, but then all of a sudden, it's over.

Tonight we are sitting at the North Little Rock RV park. Random, yes. We had to come to ACH today for another helmet fitting. Here is my poor girl. As you can tell from the picture, she is really not too fond of the process. I think I have mentioned Caroline prefers to be held. Hey, she's not picky. She's particular, okay? Anyway, the helmet guy- I never caught his official title so in my mind he's "Helmet Guy"- he tells me to place Caroline in the Bumbo seat. "All the kids like it" he says. Mmm hmm. I comply knowing full well she is not going to have any of his nonsense.

She really isn't a fan of the sock on her head. I don't get it- something to do with lasers. Ask my husband, the engineer. He knows. I just know Caroline isn't crazy about the black t-shirt. She wants it to be known that is not from her personal collection. 

About 5 seconds after this picture was taken, he says "never mind, just pick her up." Gladly. Magically, Caroline stops screaming. Imagine that. So, Caroline and I sat down quietly. Then we were done and on our merry way. Since we have to check in at the surgery center at 5:30 tomorrow morning, we thought it more convenient to stay the night here rather than wake up at 1am to shower, pack, and feed her by 3am. Fortunately, I have the best dad in the world. Truly. He brought his RV down for us to stay in since the RV park is about 5 minutes from the hospital. So here we sit. Just like Matt Foley. Living in a van (sorta) down by the river. Currently, we are having a dance party and singing T-Swift's newest song. Punky isn't normally a fan, but she admits this new one is solid.

The next few days and weeks may not be the most pleasant, but we will make it. We are confident of this because of all of you offering up  prayers and support on our behalf. The other night, I was feeling overwhelmed before bed and grabbed my bible hoping to find a little peace to calm my nerves. This passage made me think of all of you prayer warriors and the hope you give us.

"8 We think you ought to know, dear brothers and sisters, about the trouble we went through in the province of Asia. We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. 9 In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead. 10 And he did rescue us from mortal danger, and he will rescue us again. We have placed our confidence in him, and he will continue to rescue us. 11 And you are helping us by praying for us. Then many people will give thanks because God has graciously answered so many prayers for our safety." - 2 Corinthians 1:8-11

We are thankful that although we are scared and uncertain about the future, God is never surprised or stumped. We have confidence in His goodness and that He has placed the right people in our lives. Thank you for praying. Thank you for speaking words of encouragement and hope over Caroline and our family. 

4 Months

Today Caroline is 4 months old. In some ways the months have absolutely flown by and in others, they have been the longest 4 months of our lives. Looking back, I am amazed at what she has endured during her short life- especially under the care of clueless, sleepy-eyed, new parents. We felt it a major accomplishment just to get through each day. A few weeks after bringing her home from the NICU, I spotted her baby book on the shelf in her nursery and felt a pang of guilt that I had not even cracked it open, let alone documented a single detail of her life. What kind of mother was I that I couldn't find a spare moment to create this precious keepsake for our family? Well, I was an exhausted mother. I still am, but as the days tip-toe by, it gets easier. That's what I want other new mamas or expecting mamas of these amazing, special babies to know- it does get easier. The circumstance, the disease, or the syndrome doesn't magically go away, but the way in which you deal with it gets easier. I promise. Though I still have yet to crack open that baby book, I did find a way to document Caroline's precious life. Is this what I pictured when I dreamed of capturing milestones and memories of Caroline? Never, but life is all about what you do with what you are given- and I think our life is some kind of wonderful.


Over the holiday weekend, Caroline got to visit with both sides of the family. It was decided that from now on, before each surgery, my family will throw a party in Caroline's honor.

Raise your hand if you're ready to party!

 Caroline deliberated over her party outfit for quite some time. She just felt it needed a little something extra, and finally decided a tutu would be appropriate.

Caroline was greeted with balloons, a bubble machine, and her Meme's open arms.

 We had just finished her party dinner and cupcakes when another guest arrived. Meme and Papa have some overly friendly critters that like to hang out on their porch.

Fantastic Mr. Fox enjoying some grilled chicken…and eventually decided to take the roll as well, though he would have preferred more chicken. 

Four months. How much has happened in just four months. How much my baby has grown in just four months. While she still wants, or demands rather, to be held most of the time, I am starting to see glimpses of independence. Time, thou art a heartless wench.

In Good Company

It's officially surgery week. The thing that once seemed so far away has crept up on us - the reality of it all now facing us head on. I feel like I'm a wide-eyed 7 year old again riding Big Thunder Mountain. The start of the ride isn't very threatening. I kind of knew what was waiting just down the rail but I was distracted, my attention held captive. The next thing I knew, we were slowly climbing up a steep slope. That's where I am today. I feel like I am once again in the dark, climbing slowly, anxiously wondering when I will drop. Although we have known about this particular condition and surgery for months, we have been distracted by the busyness of each day. Some being the typical care required for babies and some very atypical- like unplanned surgeries. Typical issues like feeding woes, fussiness, and sleeplessness tend to be amplified by Caroline's many health concerns. Still, our life is pretty normal, or maybe we are starting to change our definition of normal.

Friday was one of those days where you feel like you have been on a seemingly eternal roller coaster ride. I was still feeling a high from the day before. Caroline and I had coffee with another mama and her baby who are also on this craniosynostosis roller coaster. As much as I hate it for these sweet new friends, I am also so thankful to be sharing the ride with them. Maybe Caroline enjoyed the outing more than she showed because the next day was a great one for her. She was taking her whole bottle at each feeding without any choking which is a huge victory for her! Then I checked the mail. Josh can tell you I rarely check the mail. I don't know why, I think because I don't like surprises- particularly in the form of bills. Anyway, I decided I would venture to the mailbox and found two pleasant surprises. Well, they weren't totally surprising since I ordered them but you know what I mean. One was a care package from an organization called Cranio Care Bears. This organization was started by two "cranio moms" to provide support to other families journeying through the diagnosis and treatment of craniosynostosis. In addition to answering questions and sharing encouraging success stories, these wonderful ladies also put together care packages for babies and their parents. They try to include items they know will be helpful before, during, and after surgery. The anticipation of opening the package felt a little like an early Christmas. Just thinking about the families who donated items that were carefully put together by these "cranio moms" made me so grateful for those who have made it to "the other side." So what was inside our package? Well, Caroline received new pj's, a stuffed animal, fuzzy blanket, pacifier, and a cd of lullabies and prayers. Mama and Daddy also got some goodies including travel-sized toiletries, snacks, fuzzy socks (it's freezing in those hospital rooms), and a prayer chain filled with verses and words of encouragement.

Thank you, Cranio Care Bears!

Our next surprise came from an organization I encountered through Cranio Care Bears. A "cranio mom" started Cranio Angel Network. Her "cranio baby" was born with the same type of craniosynostosis as Caroline- which is not a very common type- so of course I have enjoyed reading about their journey. Anyway, she makes headbands and pirate hats for babies that are designed to help conceal surgery scars. Here is Miss Caroline sporting her new accessory.

See the pillow? I didn't even notice it until after I took the picture. A quote from one of my heroes, Corrie Ten Boom.- and such an important reminder for this ride.

Friday was a day full of emotions. I had knots in my stomach thinking about the upcoming week. What would the next Friday be like? At the same time, I also felt gratitude at being a part of this "cranio community." Even though we are only starting this part of the ride, we have assurance that we will eventually be on the other side. This roller coaster will end and as we are getting off, I hope we can encourage those just boarding the ride.

Taking a Page from Punky

Caroline is rarely called by her given name. Nearly all of the time, Josh and I call her "Punky." If you are an 80's or early 90's kid, you probably have a clear association with that name. In case you have no idea what I'm talking about, here you go. You are welcome.

The first time I called her Punky, we were getting her ready for a late night feeding. Caroline was upset because she was hungry. When I say "upset" what I really mean is kicking, scratching, pinching, screaming may-ud! Josh holds her arms while I attempt to change her. You know as a new parent, the thought of changing your baby is about the most daunting thing ever. Then you get a few weeks and a few hundred diapers under your belt and you can change her blindfolded while doing laundry and vacuuming. It's amazing. Here is how the conversation went over the screaming:
Me: Ohhhh, it's really ok, Punky.
Josh: What?
Me: I said "it's really ok, Punky."
Josh: What? What are you calling her? Punkin?
Me: Punky!
Josh: Punky?
Me: You know, like Punky Brewster?
Reconition spreads across his face and in a dead ringer for Henry (the guy who adopts Punky) says, "Punky!"
I stare at him in adoration and think, "this is why I love you."
Early on in our NICU stay, we had to feed her on a strict schedule- there was no "feeding on demand" in the NICU.  Eventually, we were able to talk the doctors into letting us feed on demand which made our NICU stay much more bearable. Anyway, at the time, no one could figure out why Caroline was having difficulty finishing a bottle. The thing is, cleft-affected babies do usually have trouble figuring out how to eat. They have totally different anatomy and it takes time for their little minds to wrap around the issue at hand and adjust. That wasn't the problem with Punky. She astounded every single nurse, doctor, and speech therapist with her sucking ability. That baby was using a regular baby nipple- a Dr. Brown level 1 at that! For all of you who haven't had much experience with bottle-feeding, a Dr. Brown level 1 is one of the hardest to manipulate. It is designed for newborns so they don't get too much milk at once and choke. Anyway, poor Punky could take about an ounce at a time and then she would be so winded. It would take about 20 minutes for her to take just an ounce because she would need frequent rest breaks. Y'all, by the time our 20 minutes was up (oh yeah, they time you, but that's for another day) my poor baby sounded like she had just finished running a marathon. No one could figure out how on earth Punky could start off so strong but wear out so quickly. Then, they found the choanal atresia while they ran a CT scan to examine a cyst on the back of her tongue- more on that another day. Poor baby couldn't even breathe out of her "good" nostril- the one not affected by the cleft. The nostril on the cleft side was totally open to her throat of course, but an issue when feeding with a cleft is the milk flows up into the cleft. So, while technically, she could breathe out of her cleft-affected side, it was impossible to do so when she ate. Are you still with me? Basically, Punky was teaching herself how to breathe out of her mouth and eat simultaneously. Breathing out of the mouth is something a typical baby does not do until 3 months of age. So, why do I call her Punky? Because like Punky Brewster, she's a tough, scrappy, resourceful, funny, larger-than-life little lady.

Yes you are, baby girl. Yes you are. 

Bleed, Pray, Love

Once you have been through the first few surgeries, you start to get a pretty good routine in prepping for the next one. This cranial surgery though- this is a completely different monster altogether. Sure, I will know what kind of clothes to pack and how much frozen milk she will need, but this surgery is a biggie and the first that we have had to make another preparation…

Our local Red Cross

Last week, I got a call from Dr. Cai's nurse regarding Caroline's upcoming surgery. She gave me a lot of information including the specifics of the procedure and what we can expect in the hours and days following. It was overwhelming and emotional for me. A lump welled up in my throat when she mentioned spending the night in the PICU (pediatric intensive care unit) with her eyes likely swollen shut. She said "it will be really important for you to be there so she can hear your voice because she will probably be scared that she can't see." Lady, you couldn't pry us away from our baby. Then, she mentioned casually that Caroline may need a couple of transfusions with this surgery. Although this procedure involves less blood loss than the traditional one, it isn't uncommon to require a transfusion. She said, "if you like, we can set up something called a donor directed donation, in other words, you and your husband could donate for Caroline." Let me say, I have donated blood before but it isn't something I make a habit of; however, is there anything you wouldn't do for your baby? So we called and made appointments with our local Red Cross for Tuesday, August 26th during Josh's lunch break. As I have mentioned Josh really doesn't like blood…or needles…or really anything medically-related, but again, what wouldn't you do for your baby? So, here we are…

Doesn't he look brave? (Just disregard the random foot. )

So, Josh has this fear of needles and blood but he doesn't react in a typical manner. He doesn't get pale or shaky or upset. No. He laughs. Hysterically. He began laughing as soon as the lovely phlebotomist sat him in the chair and he continued laughing right out the door and all the way to lunch. The phlebotomists were perplexed but quite entertained. The office manger left for lunch and remarked how funny it was and then when she walked back in 15 minutes later, she exclaims, "My gosh! Is he still laughin'?!" The phlembotomist replied, "Yep." "He been laughin' this whole, entire time?!" "Yep." At least it was easy for me to get him to smile for the camera. In between his laughing, we were able to tell the ladies a little about Caroline. They listened and shared encouragement and on the way out they said they would be praying for her and were going to write down her surgery date. Then we stopped for a quick lunch at Quiznos and one of the owners asked about Caroline. He said he had been thinking about us and would keep praying. We got our food and got seated. Wouldn't you know the only table left was one of those high ball tables with the tall stools? I was so scared Josh was going to fall out on me and go crashing on the floor of the city mall. Anyway, as I sat down, a lady from church I have known for about 15 years came up to me and hugged me. She said, "I read your blog" eyes filled with genuine concern, "and I am praying for y'all. It's going to be ok." I got another hug and I actually felt like everything is really going to be ok. That's what I love about a small, southern town. Most everyone you meet truly cares and when they say they are "gonna be prayin'," they really do mean it.

The sweet lady at the Red Cross saw me taking Josh's picture and said "Mama needs one, too. That way when that little girl starts sassin' you one day, you can let her know what's what." Mmm hmm 

Clinic Visits and Gettin' Right with The LORD

Last Wednesday, we had our first ever clinic appointment at ACH…kind of unheard of for an almost 4 month old. Since Caroline had to have 6 surgeries to fix the choanal atresia- also unheard of- we had simply been following up with her ENT doctor in the OR every other week. I'll elaborate more on this part of the ride later, but I will say it was a painstaking process of cutting, scraping, and praying. This condition occurs in about 1 in 7,000 births and has varying degrees of severity…well wouldn't you know our Caroline had the worst case our surgeon and his mentor have ever seen. After having a breathing tube placed in her nose for 4 weeks, our prayers were answered. After the latest surgery confirmed her nasal passage was finally open, I got a call from the ENT nurse, Lucia, with a time and date for our clinic appointment…or should I say appointments…

It turned out we wouldn't only be seeing ENT but also craniofacial and neurosurgeons. I was a ball of nerves leading up to this appointment. I'm always nervous before surgeries but this was different, there was an urgency in Lucia's voice that unsettled me. The latest CT scan showed Caroline's ventricuolmegaly was still progressing, so neurosurgery wanted to examine her to see if she would require a shunt or some type of brain surgery. Wonderful. After hours of waiting, we finally got to see our surgeons. We had met Dr. Honnebeir, her craniofacial surgeon, in the NICU, but the neurosurgeon, Dr. Cai was a new face. They carefully and precisely ran their fingers all over her skull, and with that they had their verdict. "That's it?" I thought. They discussed her case and with the worsening ventriculomegaly, decided they wanted to operate ASAP… Thursday, September 4th to be exact. This was news to us because when we were in the NICU, we were told they would do the cranial surgery at 9-10 months. The good part about operating earlier is they will be able to do an endoscopic procedure rather than the traditional calvarial vault remodeling. So what does this mean for us? Well, it will be a less invasive procedure which means less time under anesthesia, less blood loss, and fewer nights in the hospital. All very good things. The only catch is she will have to wear a helmet for 6-8 months to help her skull grow and shape normally. Now off to orthotics to fit her for the helmet…

Here she is reading a horse book while waiting to see the ENT doctor. I told y'all my baby likes to read…and apparently she also like horses, she is her mama's girl after all. We did promise her a pony if she would take all of her bottles in the NICU. I guess she is expecting us to make good on that. 

So far, our day at ACH had been pretty positive. Then we met the jerk. Maybe he was just having a bad day and doesn't actually hate babies and their parents. Maybe I'm just super sensitive and defensive as a parent. Either way, it has been quite a learning curve in dealing with people who are not the kindest to your baby. I am getting better…slowly…it's a process. The fact that I have been able to make it this far on the ride without slapping the rude out of somebody is evidence of The LORD working in me. That is not to say I haven't had some ugly- and I mean very ugly- moments. Our first well baby visit at our local pediatrician's office almost ended in me getting in a brawl. This lady kept staring at Caroline. I know she looks different. I know people are curious about the tape on her lip but less than a week after leaving the NICU, my emotions are still on edge. As she is staring, really gawking would be a better term, at my daughter, I glare at her and throw my arms out like, "What?!" This lady glares right back at me. Fortunately, Josh was nearby filling out paperwork with the receptionist. He comes over and whispers, "please don't get me involved in a fight." "Josh, she just better not start nothin' with me." "OK just settle down." So I avoid anymore eye contact with the lady but I'm still muttering "stare at my baby, I'll poke you in the eye…slap the ugly right off of you."

The problem with being transparent is I have to share the bad right along with the good. I want people to like me but the thing is it is impossible to please everyone. I hope maybe one person can relate to even my crazy, ugly moments and know they aren't alone.

Can I get an amen, y'all? 

Meeting Sweet Caroline

Our girl made her appearance on Friday, May 2nd. Her original due date was May 17th, my birthday. I knew she wouldn't want to share her big day and expected her to come early. We had been praying and preparing to meet our baby. I was so excited but also terrified to meet her because we still didn't know of a clear diagnosis. We knew she would be born with cleft lip and palate but didn't know what was causing the ventriculomegaly. Throughout the pregnancy it had progressively worsened. My OB told us with this particular brain anomaly, there is a wide spectrum. She said our baby could either be very normal or very abnormal. Josh and I were hoping for the best but preparing for the worst. Aside from the potential mental issues, I was worried about her physical appearance. I wasn't sure how I would feel when I first saw her but had heard from other mamas of cleft-affected babies that you see past the cleft and fall head over heels in love. The problem was it would be hours after she was born that I would see her let alone hold her.

So, after 9 hours of labor, I decided to go ahead and get an epidural because I had this fear that if I didn't do it soon that I would miss the window for it somehow and be forced into a natural birth…yeah no thank you. Once the epidural started working I was feeling amazing. It was less than 5 minutes after the anesthesiologist left that  I started texting my sister-in-law and then all of a sudden I glance up from my phone and see about 6 doctors in my room. Now UAMS is a teaching hospital so I didn't think much of it at first. Then, they start turning me all different positions. Apparently my baby's heart rate had dropped significantly and was not coming back up. So they ask me to get on all fours- which is not so easy when you are numb from the waist down- and an OB that I had never seen before kneels down and whispers, "OK sweetie, we are going to have to do a c-section, OK?" Let's see, after 9 hours of back labor, heck yeah get this baby out of me. Oh, I should mention that just before my epidural, I urged my husband to go get breakfast downstairs. He and my dad just got back upstairs when the doctors began wheeling me to the OR. At this point I'm still on all fours heading for an emergency c-section and all I can think about is if my butt is covered. Then I hear a doctor yell back at my husband, "you coming, Dad?" He better be. We get to the OR and they say, "OK can you slide over on the table?" I look at them and meekly say "I don't think I can move so well." When in my mind I'm saying, "are you freaking kidding me, morons?" Less than 5 minutes later I hear a tiny cry. I look at Josh. His face is so white. I didn't think much of it because my husband really hates blood. Then they are wheeling me to recovery and I realize I didn't get to see my baby. Where is she? Josh comes to my bedside and says our girl wasn't breathing well and was pretty blue but they have her under a heat lamp and on oxygen. They also want to run a few tests on her. Oh God. A couple of hours later, they wheel my girl in but I can't touch her. She's in a tiny plastic box. They let me glance at her a minute and then take my baby away from me. Birth plan? Skin to skin contact? Throw all that out the window. When you have a critical baby, the doctors don't give you a choice, she is their baby now. My body was in shock. I shook uncontrollably. Fast forward a few hours and I'm finally in a real room on the 6th floor and my precious girl is in the NICU on the 5th floor. Josh tried frantically to be with both of us but I told him to stay with her. I kept pleading with the nurse to let me go see her but to no avail. I still couldn't move my legs. I was overdosed with the epidural, whatever they gave me in the OR, and the demerol and morphine in recovery. Caroline Elizabeth was born at 9:21am Friday morning and it would be midnight before I was allowed to make the trip to the NICU. I still couldn't feel my left side but my night nurse took pity on me. I remember her aide LaTonya saying "she just need to see that baby." Yes LaTonya, yes. I stayed with Caroline until 2am but just felt in the way in her tiny room with the nurse hovering over us. I stuck my hand through the small opening in her plastic box and stroked her tiny hand. This was my view of her. Look at those sweet little hands already holding her paci…I'm telling you, my girl is gifted.

Despite an ultrasound on her head the next day the doctors still didn't have answers for her enlarged ventricles. I asked why they weren't giving her any nutrition but got no answer just that they needed to run more tests. Then, Sunday morning at 4am I woke up to pump and Josh came in my room on the 6th floor. I could see he had been crying. His voice shook when he said, "if I knew something, would you want me to tell you?" I just stared at him and nodded. "The neonatologist thinks she has Trisomy 13." What? How could that be? He started crying and I just sat silent, numb. I was so angry at God. What was the point of all of this? How could God give us a precious gift only to snatch her away? Josh said they had drawn a complete chromosome test and would get the results later that day. So we waited and we prepared ourselves to say goodbye. This was not one of those "You give and take away but blessed be Your name" kind of moments. Nope. It was raw and ugly. I told God I was so happy I got to experience something that so many women don't but that I still didn't understand why He would allow this to happen. Then the miraculous happened. I went up to the NICU thinking it would be one of the last times I would see her. I cried and said I loved her. After awhile, we walked out of her room and met the doctor in the hallway. She said, "I'm so glad I caught you. The test results are back and her chromosomes are normal." So no Trisomy 13? No, thank You, God. She was still concerned with her brain and of course the cleft so she set up a transfer to Arkansas Children's NICU. The ACH Angels came to transport her and informed us we couldn't ride in the ambulance with her. We gathered all our stuff and drove to ACH and checked in but still did not get to see her for a few hours. Since Caroline didn't have a private room yet we couldn't stay the night with her. So, we reluctantly said goodbye and went to a nearby hotel.

The next day was magical. I was pumping when the neonatologist made her rounds and Josh got to visit with her. He told her we would really like for Caroline to receive some nutrition and he said, "my wife would commit felonious acts for the chance to finally hold her." She said "let's make it happen."
Finally, over 72 hours after her birth, I got to hold my Sweet Caroline. Though I have loved Caroline since that first positive pregnancy test, the love was made complete as soon as she was in my arms. I felt a peace that no matter what, she was mine and I was going to do everything in my power to give her the best life possible. Another good part of that day? Being moved to a private room so we would never have to leave her side. Yes, those are pajamas. The thing about being a NICU parent is you start to look more like a patient.

Our NICU stay was a bumpy one full of ups and downs. The 24 days spent there will forever be etched in my memory. It would be far too much to try to write it all now, so I'll try to flashback at different points in our journey. I will say I have never felt so many emotions or been through a more trying time in my life. However, we witnessed small victories and big miracles from our little warrior baby. We had another fatal, but thankfully incorrect diagnosis. After Caroline's first MRI, the neonatologist came in and said, "sit down, Mom." Something I learned once you have a baby, you no longer have a name other than "Mom" but that was just fine by me. Anyway, she said, the MRI showed brain abnormalities, including a "smooth brain" or lissencephaly. She stated matter-of-factly that Caroline would probably die in her sleep at about 5-6 years of age. Excuse me? I texted my parents to come right away. They came down to Little Rock every single day. I don't know what we would have done without them. I held my baby and cried and Josh went outside to process this new devastation. My parents arrived within an hour. It wasn't until much later that day that the neurologist came in to explain the MRI results. It turns out they got the results mixed up. Caroline didn't have anything fatal and certainly did not have smooth brain. The neurologist said her optic nerves are small and that opthamology would want to consult as she could have impaired vision. The resident came by for her eye exam and explained that sometimes when a baby has small optic nerves it can cause random eye movements that cannot be corrected. Great. He examines Caroline and determines her optic nerves are on the smaller side of normal but that they are normal.

I knew her eyes were fine. Here she is reading a book with her Papa. I told y'all, my baby is gifted.

So, what are we facing with Caroline? Well, in addition to the cleft lip and palate, she was also born with a condition called choanal atresia. This is a birth defect that involves a blockage in the back of the nasal passage. Caroline had it only on one side but it greatly impacted her ability to breathe and eat. She had to have 6 surgeries to finally fix it but more on that another time. She still has ventriculomegaly which we now know is due to craniosynostosis. This is a condition where a suture in the brain fuses prematurely- usually at around 12 weeks gestation. This condition affects skull growth and brain development so it has to be surgically corrected soon, again, more on that soon.

In other words, we have more answers but we still face many unknowns. We don't know how all of this will affect her mental and physical development but so far we are so encouraged by what we have seen from her. All we know is Caroline is a miracle, she is loved, and she moves mountains. I don't know why she has had to endure so much already but I am confident that God uses everything for good.