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.