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.

The Ride Begins...

December 16, 2013 was the day our world began to crumble. Originally, it was a day we had been looking forward to- our 18 week OB appointment where we would learn the gender of our baby. We had just returned from a week at my parents' beach house a few days earlier and were so excited. Josh had to work so my mom and sister-in-law accompanied me to Little Rock for the appointment. Prior to the ultrasound, we had to meet with a genetic counselor. Being a type 1 diabetic, I was considered a "high-risk" pregnancy though I had gone to extreme measures to make sure my blood sugar levels were immaculate. Anyway, as a "high-risk" they recommend genetic counseling to let you know of different birth defects that can occur. I felt like it was a huge waste of time, but sat across from the counselor politely nodding and halfway listening to his rehearsed speech. I foolishly thought "well this doesn't apply to me…birth defects happen to people who smoke or drink during pregnancy…that could NEVER happen to me." Wrong. After the genetic counseling, I finally got to have the big, much anticipated ultrasound. The tech was a sweet, bubbly girl who asked if I wanted to know the gender. I said, "if he or she will cooperate" she replied "oh, don't worry, he or she will!" After about a minute she just blurted out "It's a little girl!" Me, my mom, and sister-in-law all screamed with delight. Then she did the rest of the anatomy scan closely measuring each organ. I was mesmerized…oh her little heart beating away was the most beautiful sight I had ever seen. I remember she had her little feet crossed and had her hands over her mouth. The tech was very quiet but I thought she was probably just concentrating. After about 20 minutes, she left and said, "the doctor is going to look over the images and should be in shortly." I thought, "Finally I can tell Josh!" We were all busy texting the happy news to family but after 30 minutes had passed, I  started to get a little worried. As soon as he came in the room I knew something was very wrong.

He wasn't my usual doctor. He was young and abrupt. He sat down and said "OK, so there were a few findings." I believe my heart jumped in my throat at that point. He wanted to look at her again to "make sure she doesn't have Spina Bifida." Yes he actually said that. "OK her spine looks good so that's a good thing but it doesn't explain her ventriculomegaly." Excuse me? Apparently, my sweet girl had enlarged lateral ventricles in her brain which they often see with Spina Bifida and hydrocephalus. He said we needed to monitor them regularly to make sure they were not worsening. He said, "let's start at the top and work our way down." He reiterated his concerns with her brain and said that was just the first issue and "let's continue." In my mind I was pleading "Oh please, please, let's not continue." I desperately wanted to rewind and go back to just being happy- to back before I heard my sweet, beautiful, perfect little girl had "a few findings." The next stop was her face. He said she had cleft lip and palate. Tears were threatening to run down my face. I couldn't catch my breath. He stated his concerns that she could have an underlying syndrome. He explained when there are multiple "anomalies" it is likely a chromosomal issue. He strongly urged me to have an amniocentesis done that day, but I couldn't wrap my mind around what he was saying. I finally composed myself and agreed to blood work to rule out Trisomies 13, 18, and Trisomy 21, more commonly referred to as Down Syndrome.

Somehow, we trudged through the worst Christmas ever and the next week I finally received a call from the genetic counselor that all of the blood work results were negative for any of the Trisomies. He still encouraged the amniocentesis so that I would have all the information needed to "make a decision."   He explained that although our baby didn't have any of those 3 Trisomies, it didn't mean she didn't have a possibly life-threatening syndrome. Josh and I were always incredibly pro-life, so we knew deep down that no matter the outcome, the decision to sustain her life was not our's to make. The following days, weeks, months were filled with tears. Tears of sadness. Tears of anger. Tears of guilt. Had I done something wrong? I tried my very best to manage my diabetes. I ate well- I mean I didn't even drink caffeine and for a coffee addict, that is a huge sacrifice. I took my vitamins. I exercised. What could I have done to prevent this for my daughter? I will never understand why this happened but I know that God is sovereign. He is good. He is merciful, and He was going to see us through this incredible devastation. Does that mean I didn't break down and sob or yell at God? Nope. I was very angry and hurt that He had allowed this to happen to my daughter and there are still moments I question Him. I want to be completely transparent with you. I would love to say I was praising Him in the midst of our trials but I'm not going to lie and speak Christianese. It sucked. It still sucks, but we have learned so much through this journey and I can honestly say we have seen God's goodness. You grow closest to Him when you are so consumed by sadness, grief, anger, that you cannot possibly continue living without Him. There were days I would have to grab my Bible from my bedside table to give me the strength to actually get up in the morning. My pregnancy was marked with incredible sadness and uncertainty. I was so nervous to meet our girl but also so excited. We had researched and thought we had prepared ourselves for how the birth process would be. How wrong we were...

Embracing Transparency

As a guarded introvert, I never imagined I would be sharing our family's journey in such a public manner. I've heard it said to be careful what you share with people because few actually care, most are just passionately curious. I used to embrace that philosophy, but slowly, my outlook changed. Over the past few months, I have seen eyes filled with genuine concern, heard gentle voices of sympathy, and read encouraging words from texts, emails, and even actual mail. Since December 16, 2013, life has been an absolute roller coaster. Although this ride has not been easy, we are learning you can find joy in each day. It is my hope that by embracing transparency and sharing our story, someone, somewhere, somehow will be encouraged. Our story is long, complex, and messy but I've learned that is true for everyone. When you spend time at Arkansas Children's Hospital, you can't help but see that everyone is fighting a battle- or all out war. We have met many fellow warriors fighting for seemingly small victories. May we be joyful warriors. Welcome to our crazy ride.

Our Sweet Caroline. I kept telling her to show me her war face and this is what I got.