Only the Heart Knows

February 9, 2014 by Jamie Cook

If you have been following my blog for long, you know that this is one of my favorite sayings.

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Life has handed David and me a tough hand in the last few years, but we’ve learned so much that it is all worth it. I’ve always read this quote thought of our battles. First, having a scary pregnancy and thinking our baby would not live. Then meeting our sweet Callie Anne and learning that she has Apert Syndrome. Next we faced surgery after surgery with dozens more to come. These are our battles. Well, these and all the other things that come with them. The pain and stress that our hearts carry is not always visible and it has taught us to keep this quote in mind when encountering others.

On January 11, we began a new battle. My brother’s wife was hospitalized with h1n1, double pneumonia, and later ARDS. She lost her baby at 21 weeks while in a coma, which she remains in today. I’m sure you’ve been following her story if you’re reading this blog. If not, go to the Facebook group “Love for Leslie.”

The thing about these personal battles is that life still happens outside of what’s going on in your hearts and minds. We still have to go to work. We still have to run errands and run a household. We still have a daughter to raise and care for. And even more than that, when we are out living our lives, we encounter people who have no idea what is happening in our hearts and don’t know to cut us a little slack when we are short with them or grouchy.

Today, after getting some not so great new regarding the progression of Leslie’s condition, I had to go run errands. While I was waiting for a very long time in line at the pharmacy to pick up Callie Anne’s medications, I found myself so frustrated that they were wasting my time and that I was the 4th car in line. When I got to the window, the lady was less than friendly. By the time I left I was aggravated and annoyed. Then I went to the marketing day for Rhea Lana so I could get fliers to pass out in return for an early shopping pass. (Callie Anne’s cute clothes don’t come cheap!) As I stood in line with dozens of other moms, I found myself looking around and wondering, “Does it show?” Does the pain in my heart show on my face? Is there any way these people know what I’m fighting inside?

The answer is no, of course. Well, with the exception of the smeared makeup and very tired eyes from the drive down there. But, the point is, they don’t know what I’m dealing with and I don’t know what they are dealing with. So, when I get annoyed at the long line of cars who are all picking up medications, the mom on the phone in front of me not paying attention, the kids running around like wild monkeys, or the lady that was not so friendly in answering my questions, I have to wonder…are they fighting a battle like I am? Do they deserve to be cut a little slack like I want them to cut me?

I’ve found myself wondering the same thing while sitting for hours and hours in the ICU waiting rooms during Callie Anne’s hospital stays and now Leslie’s. Those rooms are full of people hurting. When you are there, you know that everyone else there is fighting a similar battle to yours. You’re all worried, scared, and exhausted. . Hospitals are like an alternate reality. They are their own little communities and everything is different inside those walls.

But, it’s not that easy when you’re out in the real world. You have to dig deep to remember that everyone you meet deserves the same love you want extended to you. Now, does that mean you’ll never hear me say, “What the h-e-double hockey sticks is her problem???” Now way! But, hopefully, more often than not, I’ll step back and remind myself that I have no idea what is on her heart or mind.

There are so many things I hope we all learn from both our experiences with Callie Anne and now with Leslie. One of them, is to stop and look around every once in a while and ask yourself what the people in the room with you might be battling, and if you’re so inclined, just stop and say a quick prayer for them. You never know who you could be blessing.

 

10 Fingers & 10 Toes!!!!

January 9, 2014 by Jamie Cook

Most parents love the moment when their babies are born and they get to count all 10 fingers and toes. They have picture frames and cute little things that say 10 fingers and toes all over them and kids’ books that talk about them all the time…trust me, I know. Several unknowing people gave us these gifts before CA was born. They didn’t mean anything hurtful and didn’t know that she wouldn’t have them at birth. I quickly threw them away and haven’t thought of them since.Tonight, for the very first time, I got to count my daughter’s 10 fingers and 10 toes! It has been a long are difficult road for all of us, but we made it and have these beautiful digits to show for all the pain she endured and stress we went through. Her life will be so much easier now and she will be able to do so much more. Not the least of which is wear rings :)

These photos are graphic and raw. As they heal, they will look so much better, but I know there are so many people dying for a peek!

We unravel the casts ourselves and under them is gauze and wrappings to keep them covered as they heal during the 3 weeks of casting.

Taking off the casts!!

Taking off the casts!

After unraveling the casting, we soak her in the tub to loosen the dried bandages. We have to be super careful not to pull the gauze and hurt her skin grafts.

Soaking off the gauze

Soaking off the gauze

She was playing with toys immediately and licking each finger in wonder!

I can do so much with these things!

I can do so much with these things!!

Here are all the new digits and comparisons from beginning to end.

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It’s truly amazing and hasn’t completely set in our brains. We can’t wait to watch her grow and learn using her new hands and feet!

 

 

2013: A Year of Learning and Growing

January 2, 2014 by Jamie Cook

As I reflect on 2013, I remember a particular day last January during one of Callie Anne’s 5 hospital stays of the year.  We had spent last New Year’s at Mercy Hospital. David had to go to work, so my amazing friend, Jodie, came by every morning during her Christmas break to bring me breakfast and so I could take a shower. On this day, when she walked in, I was sitting on the couch in the hospital room holding my 4 week old baby girl with my computer on my lap and crying my eyes out. Not just a few tears streaming down; it was like the ugly cry. It wasn’t until this hospital stay that I had began researching Apert Syndrome and connecting with other families. Until then, we were just trying to survive and really had no idea what we were dealing with or what was in our/her future. After finding the Apert family support groups on Facebook, I came across someone who is a dear friend now. I had spent most of the previous night reading through Kerry Lynch’s blog about her daughter, Mary Cate. It was that morning that I realized what 2013 was going to be like for our family. While it was comforting to know that this family had made it through, so we could, too…it was beyond overwhelming and, frankly, scary as hell! Here is our little family exactly one year ago.

NYE 2013

NYE 2013

Little did we know, this was the beginning of what would (hopefully) be the hardest year of our lives. However, it was also the most rewarding in so many ways! David and I are much better people today than we were just 1 short year ago. We are more faithful, more kind, more giving, and so much more patient. We may not have been handed the easiest life, but there is no doubt in either of our minds…we were absolutely handed a life that is better than we could have ever imagined! Here are just a few of the things I learned in 2013.

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I would not say I was an unkind person prior to 2013, by any means. However, I know for a fact that I’m much more kind today than I’ve ever been in my life. One of the zillions of gifts God gave me when He gave me Callie Anne is a heart that sees something special in people that I may not have taken the time to see before. I find myself thinking before I speak or judge much more than ever before. When I see someone who is different than me in some way, I almost always take a moment to imagine their story. Every single person is the most important person in someone’s life. They have so much more to offer than is ever apparent at first glance and deserve the opportunity to let that show. Can you imagine a world where everyone took a minute to think, “What is the most kind way to say this?” before they spoke?

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I’ve always been a Christian, but I’ve not always been one who prayed regularly. I just didn’t take the time to do it. Since CA came into my life, prayer has become part of who I am. There have been so many times that I didn’t know how to pray. My heart hurt too badly or I was too scared, too confused, too overwhelmed. In those times, I find myself just “being” with God. I don’t always have to have a “sermon worthy” prayer to pray. Sometimes, I just say, “Be with me.” My heart and soul have changed so much in the past year and prayer has been a large part of that.

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I can only assume that all moms feel this way about their daughters, but I am just head over heels in love with this girl! I’ve never known anyone, especially someone so young, who is as strong as my Callie Anne. She already, at the age of 0ne, has a sense of wisdom in her eyes. She has been through so much more than any baby should have to go through, and yet, she always perseveres. She never has the “poor pitiful me” attitude. She just stops, regroups, and keeps going with whatever she has available to her at the moment. We could all learn a lot from Callie Anne Cook! I can’t wait to see what else she has to teach me!

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I’ve always loved this quote from Maya Angelou, but it means so much more to me today. We’ve met more doctors and nurses in the past year and a half than in the total of both of our lives prior. One thing we have learned is that being a doctor or nurse is a true calling. The ones who make you feel good, safe, comfortable, are the ones we love to remember. And the ones who were less than friendly, didn’t respect our roles as parents, or let their egos get in the way are the ones we will always remember, but for other reasons. I don’t remember the names of every nurse who has taken care of Callie Anne so far, but I can picture them in my mind, remember specific things they said or did, and absolutely remember how they made me feel. In each of her surgery photo books, I include pictures and names of nurses who were part of our journey.  Being in the hospital with a child is never easy and nurses are the ones who can make it or break it. Luckily, most of ours have been more than wonderful!

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My mom and I have always been close (well, except for those teenage years…). She’s the strongest and smartest woman I know. But, it wasn’t until I became a mother that I truly understood the connection between a mother and a daughter. When I got pregnant, I knew my mom would be a huge part of my life as a mother, but I never knew how much I would need her. More than how much I need her is how  much she is willing to give. I never have to wonder if she will be there for me, she’s just always there. It’s like my pain is her pain, my struggle is her struggle, and my joy is her joy. I guess it’s always been that way, but now I can see it and appreciate it. If I can be half the mother to CA that she was and is to me, I’ll be happy!

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David and I were married in September 2011, and pregnant with Callie Anne 6 months later, as planned. We were ready to be parents. What we didn’t take into account was that we probably could have used a little more time to experience life as a couple, but we are still extremely happy with how it all turned out. The first few years of marriage are hard no matter what! Add a baby to the mix and it’s even harder. Add a baby with special needs and you’ve really got the odds stacked against you. It’s very difficult not to take your fear, exhaustion, heartache, worries, and frustrations out on each other. We’ve learned that the hard way, but we’re making it because at the center of our marriage is always our faith. When the days are really tough, we try to turn to God because we both believe with all our hearts that He meant for us to be together, so He will help us through no matter what. We have learned a lot in the past year about how the other handles scary and stressful situations. And it is in those times that I fall even deeper in love with my husband because I see the strength he brings to our family as a husband and father. We spent this New Year’s Eve alone together recharging for 2014 and our goal for this year is not to take each other for granted and remember to nourish our marriage as much as we nourish our daughter. It’s not easy to take time to just BE together when your life revolves around your child’s medical needs, but in 2013, we learned how important it is.

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Not all of our days in 2013 were enjoyable. We had scary days. We had painful days. We have days full of heartbreak and days full of worry. But, we also had days full of joy, success, and pure love. It was those days that made the others worth it. One of the big lessons I learned this year was to be grateful for every single day you are given. Recently, we spent 4 days in the intensive care unit in Dallas with Callie Anne and a couple of those days were just downright terrifying as a mother. It wasn’t our first time in ICU and it won’t be our last. That’s just the way it is. But, in the end, I thank God for those days. I have more friends than I can count on both hands who would give anything to be spending the day with their child in ICU because that would mean their child is here on earth with them. Let us not forget that there is always someone who is hurting more deeply than we are. That certainly doesn’t mean that we don’t deserve to feel the emotions that come with those bad days. I’m the first one to close the door and have my own little pity party. But, when I’m done, I try to think of those dear friends who can’t hold their child and have to wipe their own tears that have fallen from the top of their child’s head, and I always try to stop and say a prayer for them. We are all fighting our own battles and I’m grateful to be here and to have my family to fight them by my side.

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Before we found out there was something “different” during my pregnancy, I was halfway through graduate school and teaching full time. I’ve always been the kind of person that tries my hardest and goes the extra mile. I never slowed down and always had a much too full plate in life.  I took a break from graduate school, knowing the rest of the pregnancy would be tough. It was October 2012, when I was 32 weeks pregnant and my doctor told me I couldn’t go back to work. My blood pressure was much too high to be on my feet teaching 4th grade all day. I fought her tooth and nail and even negotiated half days for about a week when it was still too much.(I wish I knew then what I know now…work is just work and can wait) I spent the last 6 weeks of my pregnancy either in bed, on the couch, or laid back in the recliner. My life changed that October in so many ways. I planned to return to work 8 weeks after Callie Anne was born, but that didn’t happen either. I haven’t been back to work since Oct. 2012. On Monday, I will be returning to the classroom to teach 2nd grade. I have so many mixed emotions about it. On one hand, I’m so ready to have a life outside my house and something else to obsess about. I’m also craving adult interaction and need a distraction. But, on the other hand, I can’t imagine not cuddling with my baby girl every morning and being right there for every new thing she does or says. (I’m sure some will be glad for that because I won’t be filling their Facebook feeds with pictures of every move she makes! :) ) I will always cherish the 13 months I’ve spent being at home with her, but I know it’s time to get back to work and for her to go to daycare and have more social interaction. 2013 was a unique kind of year for our family and one that will never be repeated. The coming year will be different in every way. But, it will be in every way that we all need. God knows what He’s doing and has shown it in every single minute of our lives since CA was born. We know He will continue to lead us into 2014!

So, as I think back to that morning in January of 2013 when I cried and cried over the thought of all we would have to go through during the coming year, I realize that we made it! And not only did we make it, but it’s been the most rewarding year of our lives! Thank you for being part of it!

Why Share So Much?

December 16, 2013 by Jamie Cook

There have definitely been mixed reactions to how we (I) have chosen to share this journey so publicly. Not everyone believes it’s a good idea or is interested in following the journey. I totally get that and have learned to ignore the not-so-supportive comments because there have been SO many positive reactions. I have so many reasons for sharing my blog, pictures, and status updates and I’ve been thinking about them a lot more lately as I’m preparing to go back to work outside the home and will be forced to prioritize.

The biggest reason I love sharing our story and why I started in the first place is because it helps me feel connected to others. Yes, we have an amazing support system from all over the world. However, the day to day stuff can be very isolating and lonely. While so many people offer their support in a variety of ways, David and I are still very alone in this journey when it comes to the daily activities. I find myself logging on to Facebook several times a day and almost always have an encouraging message or comment from a friend or even a stranger. Late at night, I go back and reread posts, messages, and emails from people offering support and it is so very comforting. The words of encouragement give me the little boost I need to stay focused when the load seems too heavy to carry.

In addition to needing the support and loving the encouragement, we have already gotten connected to so many families with children with Apert Syndrome or similar conditions through Facebook and this blog. I’ve been able to talk personally with 2 families in Canada who knew they were having a child with Apert Syndrome during pregnancy and share our experiences with them. Oh how I wish we had had someone to talk to before Callie Anne was born and we could have been prepared with medical information and emotional support. There are already a handful of moms who call, text, or email me when they have questions about medical care, development, or just need some encouragement. I love being a resource for them just as I have a handful of moms whom I call when I need the same things. We are a tight knit community, but you have to be accessible in order for it to work. This blog and Facebook allow that accessibility and I am thankful for it everyday.

By sharing our journey, we have opened the door to so many new and renewed relationships. David and I feel so blessed to have met dozens of new friends since CA was born. We have also had the pleasure of renewing and nourishing relationships with our family and old friends. When people have to pull together, it brings you so much closer and it’s been wonderful for us and our extended family. We have had many old friends reach out and offer support. When I find myself feeling weak and asking “why?”, it’s comforting to think about the way so many relationships have changed because of Callie Anne and I can’t help but think it’s part of her purpose. She’s changed the lives of so many and made our lives fuller by bringing people into it.

One of my favorite things about sharing pictures and updates is the awareness it gives to not only Apert Syndrome, but anything that makes a child different. The more people know about her and see the physical differences, the less surprised they will be when they see her in person. I’ve found that when we meet someone, especially children, for the first time and they have been following her journey online, they don’t seem shocked and almost never say anything hurtful. They are interested, but accepting. The more we talk about the differences, the less they seem different. I know for a fact that there have been dozens of conversations at dinner tables about how to react when you see someone who looks or behaves differently because of Callie Anne. By sharing her story, we are opening the flood gates and forcing those conversations to happen. I truly believe that it’s up to this generation to change how we see children and adults with differences. If we talk about it and teach the right values, we can do away with so much pain.

Those who don’t believe I should share so much don’t see the emails and messages I get almost every single day telling me how their lives have been changed in some way with help from Callie Anne or us. I’ve heard many times that watching our journey and faith has helped someone else in their walk with God. I’ve heard from mothers how they’ve been inspired to appreciate all the little things and not “sweat the small stuff” after reading about something we’ve gone through with Callie Anne. I’ve been told that seeing David and I go through so much and stick together even when it is really, really tough has been good for their marriages. And after every picture I post of CA, someone calls, texts, comments, or messages me letting me know how her sweet smile made their day. How can I not share when it clearly means so much to so many people?

Life is hard. It just is. So, if something like a picture of a little girl who’s been through so much in her short little life can brighten someone’s day, then why not? So even though I’ll be going back to work and won’t have nearly as much free time, I will not stop sharing or blogging. People are invested in Callie Anne’s life and she will need that support for a very long time.

 

Callie Anne’s First Birthday!

December 1, 2013 by Jamie Cook

Callie Anne’s first year of life hasn’t been the “norm”, to say the least. But what is a “normal” first year, anyway? We all have our own struggles, which to others may look insignificant, but they are all relative to our personal situations. Yes, we have had more than our share of struggles, but this little girl brings us more joy in a single day than we could ever ask for and it more than makes up for the tough times. There has been very little in my control since she was born, but the one thing I can control is my impeccable medical records. I’ve spent some time this past week looking back at our journey so far and realized that this girl has got quite a set of stats started already…

 42: the number of doctor appointments CA went to in her 1st year of life

26: the number of nights she spent in the hospital before the age of 1

14: the number of people who follow her case regularly, including: : pediatrician, developmental physician, craniofacial surgeon, neurosurgeon, neurologist, ENT, pulmonologist, audiologist, dietician, geneticist, developmental therapist, occupational therapist, physical therapist, speech and language pathologist

5: the number of trips we’ve taken to Little Rock for medical appointments since she was born

4: the number of trips we’ve taken to Dallas for medical appointments

4: the number of surgeries Callie Anne had before she was a year old

3: the number of sleep studies she had to endure this year

2: the number of swallow studies she has had so far

1: the number of MRIs she had in her first year

Needless to say, it’s been a very busy year for all of us! Looking back on all that we’ve been through made today even sweeter and more fun to celebrate. We made it! There was a time before she was born when I honestly wasn’t sure I would ever see her turn a year old and here we are! We are blessed beyond our wildest dreams! We began our day with lunch out with grandma Sherry where Callie Anne tasted some birthday brownie (and showed off her incredibly ladylike personality)!

Birthday Lunch

Birthday Lunch

Then we headed over to Camma & Poppy’s to set up for the big celebration!

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Callie Anne LOVES attention and being in the center of the party is a little slice of heaven for her! She loved playing with her sweet friends and showing off for all of her guests. Her new thing is giving hugs and kisses. Apparently Piper and Ainsleigh love it too and there were kisses everywhere!

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As expected, she was more interested in the wrapping and tissue paper than the gifts, but we will bring out a few each day for her to explore. Our friends and family were so very generous and we are extremely grateful.

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We asked for donations for the CranioCareBears for their hospital care packages and can’t wait to make a huge donation of goodies in Callie Anne’s name!

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Since Callie Anne doesn’t take much food by mouth, I was a little nervous about the birthday cake, but she didn’t really like it that much so it wasn’t a problem. Less clean up, too!

What is this???

What is this??

We all had a wonderful time celebrating this tough and feisty little angel’s first birthday! Thank you so much to everyone who came to celebrate with us and all who were there in spirit. We are grateful for all of you!

Here’s to another wonderful year!

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On the road to fingers and toes

October 31, 2013 by Jamie Cook

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As most of you know, unless you’ve been living under a rock, the Cook family has had another eventful week. One week ago today, Callie Anne had her 4th surgery, which was the first of 2 that will give her 10 fingers and 10 toes! Each surgery requires a full day of pre-op appointments where they do measurements, paperwork, bloodwork, and meet with the surgeon. We started out this time with a trip to the Dallas Arboretum bright and early Tuesday morning with another craniofacial syndrome mom and her little girl. If you are ever in Dallas in the fall, it’s definitely worth the visit. CA liked the pumpkins there a little more than she did at our local pumpkin patch and we got to visit with April.

Dallas Arboretum & Botanical Gardens

Dallas Arboretum & Botanical Gardens

After an hour or so of pumpkin heaven and many photos, we headed to Medical City Hospital for what we knew would be a very long day for all of us. (this isn’t our first rodeo!) The anthropologist at The Craniofacial Center, Dr. Kolar, got new measurements of her skull since surgery and was very pleased with the results. Her head circumference was actually ON the growth curve for the first time instead of way below it. Across the hall, they took more pictures of her hands and feet that will assist with the surgical plan, as well as help track the progress. We had about a 2 hour gap in appointments and we all got pretty restless!

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When we finally finished up, we all took a little rest at the hotel before heading out to Lewisville to visit our friends and their brand new baby girl, Riley. Callie Anne had never met a new baby before and really wanted to play with her. And by “play” I mean lick her face and grab her ears. I couldn’t get over how tiny and precious she was and I honestly can’t remember my own big girl ever being that small, even though she was for the first 5 weeks!

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Camma & Poppy arrived Tuesday night and we all began preparing ourselves for another big surgery day. It’s all becoming a little routine for me now and I’m becoming a master at packing just the necessities. She had an early surgery time for this one, so we were scheduled to be at the hospital at 6am. And that’s when the chaos began…

As we were packing everything in the car, somehow the automatic locks kicked in and Callie Anne was locked in the running car in the parking garage. Now this was already a tense morning and I was on edge just preparing myself for the surgery and stressful recovery. Hearing my baby crying and screaming inside the car and not being able to get to her just about put me over the edge. We all scrambled to figure out a way to get to her. I’m sure the poor hotel security guy thought I was a complete basket case because I was crying so hard I couldn’t breathe and screaming at everyone. Not my proudest moment. It was 6:00am (hospital check in time) and the locksmith said he would be there in 15 minutes. Needless to say, he wasn’t. I was humiliated as I called the hospital admissions desk in tears and told her that we would be late and we had locked our child in the running car. So, after calling the guy many, many times, we decided…40 minutes later…to just break the window. I truly think Butch and David got some serious satisfaction out of the whole tire iron smashing of the window and I kind of wish I had done it. I could have used the release! After clearing the broken glass out of the backseat and hugging my baby girl so tight that I’m sure she couldn’t breathe, we were finally on our way and were swooped right to holding only 45 minutes late. Everyone knew what had happened by the time we got there. I can’t imagine the conversations that took place before we arrived. How embarrassing! I was pretty much done emotionally already and didn’t have much left to deal with the fact that she was about to go back into surgery only 4 weeks after her cranial vault. Maybe that was a good thing. We took more pictures of her sweet hands and feet and sent her on her way.

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I actually slept a lot that day in between calls to the OR for updates every 30 minutes. We were so blessed to have my mom and Butch there to take care of us. I don’t know how families without good support systems can get through things like this.

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The surgery took a little over 5 hours and we were reunited in recovery. She was pretty doped up and out of it which I was fine with because I knew that as soon as she saw those big purple things on her arms and legs, it would not be pretty! They had to put the IV in her scalp because, well, where else would they put it? Everything was covered. It was a little strange, but I was able to overlook it most of the time. It’s amazing what isn’t a big deal anymore after your child has had her skull cut open and reconstructed! She did great coming out of the anesthesia, but did need oxygen throughout the night. She was ok until we got to our room. And then the real stuff started.

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This little girl of ours is full of sass and independence. She was not at all impressed with her new accessories and made sure we knew it all day and all night. In the middle of the night she just sat herself up and let us know that she’d had enough. I’m so proud of her personality because I truly believe it will serve her well in her life. She knows what she wants and she is going to get it. She amazes me!

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The next morning, Dr. Fearon came in, took the foam off, and sent us on our way. It’s truly remarkable how quickly he gets us in and out of the hospital. He believes that children heal better at home and it’s definitely proved true for our Callie Anne.

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It was a very long and very trying ride home. Casts and car seats don’t go well together and she was really starting to feel the pain. David drove and mom and I had to take turns sitting with her in the back because I could only take a couple hours at a time seeing her in so much pain and frustration and not being able to help her. That first night at home was awful. Just awful. She was really hurting and couldn’t get comfortable. She would wake up thrashing around and screaming. I will have nightmares about it for a very long time. We slept holding her for the first 2 nights. I wanted to be sure that when she woke up hurting a scared, we were there to comfort her. Being home was difficult because she was in familiar surroundings, but not able to do all the things she could do before. My heart broke seeing the frustration on her face and the look in her eyes that just said she wanted me to fix it. And I couldn’t. She has since learned to play with several of her toys and enjoys the noise she can make by banging her casts on things. She was rolling and sitting herself up again by day three.

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Throughout the week, we’ve all figured out new ways to do things. We are all learning to adapt to life with casts and are 1 week in. Only 2 weeks to go. Honestly, I think we are better off in the casts than we will be when we start the dressing changes on the skin grafts, but that’s a thought for another day. Right now, I’m taking one day at a time.

Callie Anne turned 11 months old today. In this 11 months, I’ve learned more than I have in my entire 33 years before her. She is the most amazing person I’ve ever met and I know that all of this will be worth it when she has 10 little fingers and toes to play with! A dear friend with a new baby told me today that I’m her inspiration. She said she thinks of my strength when she’s struggling with lack of sleep, spitting up, and feeling lost not knowing how to help her son. It was so nice to hear that and I’m thankful to be able to give her that encouragement. However, when I’m struggling with medical equipment, surgical recoveries, and feeding tubes, I think of another mom I know who is in the hospital with her baby girl right now going through chemo for a brain tumor. She inspires me and makes me know that if she can do that, I can do this. You never know who you are inspiring or speaking to through your actions. Motherhood is a beast. It’s the most rewarding and hardest job there is, and we are all in the same boat no matter what our specific circumstances may be. It really does help to stop and take a look at the big picture. I’m thankful to be an inspiration to other moms and even more thankful for the moms who are my inspiration.

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Fingers & Toes, Anyone?

October 23, 2013 by Jamie Cook

Tomorrow morning, at 7:30am, Dr. Fearon will create fingers and toes where there are none. How amazing is that? I continue to be in awe of the power of medicine and what is available to give our daughter an easier life. I’m just now beginning to come to terms with the fact that we will be handing her off once again looking one way and getting her back looking very differently. When she was born ten and a half months ago, I wasn’t sure if I would ever get used to her mitten hands and sock feet, and now I can’t believe this is my last night to lie awake staring at them with pure admiration. I love every single bit of the beautiful hands and feet God gave Callie Anne, but I know her life will be easier with her fingers and toes separated. Knowing that, however, doesn’t make the tears flow any more slowly. I felt the same way exactly one month ago today when I was spending my last night with her sweet little forehead wrinkles. I didn’t think I would ever forget them…and now, I have to look at pictures to remember them clearly. Her beautiful new forehead is all I can picture because her sweet spirit shines so brightly through her crystal blue eyes that nothing else matters. So, I’ve spent the evening taking pictures of her God given hands and feet and trying to tattoo them on my brain.

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For those who are like me and like to know the ins and outs of how things work, here are the details of what is about to happen.

Dr. Fearon will separate some fingers on each hand and some toes on each foot during this first stage of the syndactyly release. (sydactyly is the term for the fused fingers and toes) He cannot put skin grafts on both sides of any finger at one time, so he will separate on either side of the middle finger.  The surgery itself will take 5 and a half hours, so it will be a very long day. There will be hundreds of tiny little stitches on her new fingers and toes. Her right hand and foot will look like this: (no Spock comments :) )

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Her left hand and foot will look like this:

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The skin grafts will be taken from her groin, so there will be some considerable tenderness there for a while. She will be in 4 full casts for 3 weeks. They will be bent at the elbow and knee to help deter her from working her way out of them. After 3 weeks, we will take the casts off and begin changing the gauze dressings 3 times a day. Each change will take 2 adults and will be extremely painful for Callie Anne. I’ll think more about that when the time gets closer because right now it’s just too much. I’ll also be looking for volunteers to come help me change them while David is at work.

This entire process will be repeated in 8 weeks (Dec. 19) and she will have 10 fingers and 10 toes by the time it’s all said and done. It’s going to be an interesting few months, but we will get through it. We’ve already gotten through so much more than I thought we could.

Every surgery, test, and procedure reminds me of what a difficult road she has to walk and also how unbelievably strong she is. It’s a roller coaster of emotions all the time. Our amazing support system is gearing up for a morning of prayer and I know will continue to show their support through prayers and so much more. We are more blessed than we even realize at times. We know that this year has seemed like there’s always a crisis in our lives. We are always needing help, prayers, and special exceptions. We know this and hate it. However, this is our life now. It won’t always be this way, but this first year is just tough. Someone recently voiced their frustration about it “always being something” with us. It hurt, but I get it. It’s true. This isn’t how we would have chosen to spend the first year of our daughter’s life, but it is what we were given and we’ve almost made it! We are so proud of ourselves and so thankful to all of those who have stood by us. We will spend the rest of our lives trying to be the hands and feet of God for others as they have been for us. Our eyes have been opened in so many ways and, rest assured, we will not let these lessons go unlearned. We have been forever changed by the love shown to us.

I will update the Prayers for Callie Anne Facebook group throughout the day tomorrow.

Lots of love,

Jamie, David, & Callie Anne

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Surgery, Recovery, & Naps

October 1, 2013 by Jamie Cook
The Cook Family on surgery day

The Cook Family on surgery day

It has been 1 week since Callie Anne’s Cranial Vault Remodel (CVR) surgery. I’ve started composing this blog post several times, but couldn’t find the words to describe the whirlwind that has been the past week. I could never string together words to tell you how our lives have been tested, but I know pictures can say a thousand words. Some of these photographs are difficult to look at, but at the same time completely amazing! We are so blessed that a procedure is available that could give our sweet girl what she needs to develop and grow into the child God intended her to be, and even more blessed that we have been given the means by which to have it done for her. And those surgeons. They are brilliant!

We arrived in Dallas on Thursday, Sept. 19 for an all day pre-op event on Sept. 20. You can read all about it in the previous blog post. David’s mom, Sherry, flew in from Florida Friday and spent the weekend with us. All of  my parents arrived on Sunday. They all got some snuggles in with our sweet girl before the big surgery. David and I are so very blessed with a fantastic support system and parents who love us unconditionally and support all decisions we make regarding Callie Anne’s care. We never have to wonder if they will be behind us because they always are and we love them all so much!

Quality time with the grandparents

Quality time with the grandparents

On the day of surgery, September 23, we all woke up pretty calm and collected. I think most people stayed that way…except for me. I pretty much lost it the second we walked in the door of the hospital and didn’t get it back together until…well…I still don’t have it all back together yet. However, what I do have is the most supportive and loving husband in the world! He has been strong when I wasn’t and allowed me to be strong for him when he wasn’t. The hardest part for both of us was the time we spent with her in holding right before they took her back to the operating room. I wasn’t really worried about anything going wrong because I have complete faith in our team and the nurse gave me a number to call and check in every 30 minutes which allowed me a small sense of control in a situation that was completely out of my control. What was so incredibly difficult, and what I can never really put into words, was the fact that I was handing my baby girl off with her adorable wrinkles that I had come to love so much and would be getting her back without them. I know this isn’t a cosmetic procedure and I have spent the last 10 months telling anyone who will stand still long enough to listen that our outside looks are not what make us who we are. Having a child with a craniofacial condition has taught me more about inner beauty than anything else ever could. But…I loved her wrinkles. I loved the huge ridge down the middle of her forehead. That was the face I’ve stayed up nights staring at since the first moment I met her. No matter how much I say, “it’s not about how we look,” I loved how she looked and I wasn’t prepared for that to change. But, it has changed and I’m dealing with it better than I thought I would. (I wouldn’t have been able to say that 2 days ago, though)

Super Callie Anne getting ready for surgery

Super Callie Anne getting ready for surgery

Dr. Fearon and nurse Cindy...she couldn't be in better hands!

Dr. Fearon and nurse Cindy…she couldn’t be in better hands!

If you know our family, you know that we travel in packs. We had so many friends and family there to support us that we couldn’t even stay in the surgery waiting area because there wasn’t enough room! We waited downstairs in the atrium where we could spread ourselves out. These pictures are in the PICU waiting area where we moved when she finished surgery and we were anxiously awaiting our first peek. We had 2 surprises while we waited. One of my very best friends drove in from Little Rock to be with us and our phenomenal pastor, Don Morrow, drove over from Bentonville. We cannot even begin to express the gratitude we feel toward those who were there and the hundreds who weren’t physically there, but were praying and watching Facebook for every little update about our little princess.

Waiting, waiting, and more waiting

Waiting, waiting, and more waiting

And then the waiting was over! Dr. Fearon (the craniofacial surgeon) and Dr. Swift (the neurosurgeon) came out with smiles on their faces. We all gathered to hear the details. They said she did great, but looked like she had been in a bar fight. Dr. Fearon said it was definitely time for this surgery because her little brain was very squished! In fact, when Dr. Swift first cut the skull bone, the dura bounced up and got a little cut which bled. They took care of it, but all I could think of was her brain in a cartoon. The caption would say, “Ahhh, finally, room to breathe!” I was terrified of how I would react when I first saw her, but my only words were, “She’s beautiful!” I cried tears of joy and relief and just kept thanking the surgeons for such beautiful work!

Our first look at the perfection that is our baby's new face

Our first look at the perfection that is our baby’s new face

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The first time I held her the next morning was tough. Luckily, she only had 1 eye swollen shut that day, so she could see me. She was so heavy! She gained a pound and a half of fluid during her hospital stay and it felt like I was holding a 2 year old! Those first few hours were tough.

First cuddles

First cuddles

On the second day, she was moved to the regular pediatric floor and that’s when things really got hard. She was so uncomfortable and we felt so helpless. On the 3rd day, when both eyes were swollen shut, she was so over all the stuff connected to her!

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Not a happy baby

Not a happy baby

I can't see, but I know there's something on my foot!

I can’t see, but I know there’s something on my foot!

And then the swelling started. Boy did she swell! I stayed overnight with her while David went to the hotel. I couldn’t stand to leave her and needed him to be rested for all of us. She woke up Wednesday morning with both eyes swollen shut. I can’t even talk about that experience because it was so very difficult for her and me both. That’s about all I can say about that. Here is the evolution of her swelling. While it seemed absolutely awful for us, we are told by so many other parents that her swelling went down incredibly quickly. For that, we are thankful.

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Week 1, part 1

Week 1, part 1

Week 1, part 2

Week 1, part 2

All the other parents had told us to take her on wagon rides around the hospital and Dr. Fearon even said that was the best thing to do to help with the swelling. So we did. We hauled her little tail all over the place. To be completely honest, on one of the trips, David and my mom took her while I took a nap!

Wagon Rides

Wagon Rides

Wagon Rides

Wagon Rides

Since we’ve been home, we’ve had some wonderful friends stop by to visit and even bring us dinners. We are so blessed! In between visits, we’ve been doing a lot of resting…as you can see! CA is just now getting over the fever from the anesthesia and picked up a cold along the way, so she’s pretty drained. She also has some strange swollen tissue in the corner of her eye from one of the sutures below the surface and some swelling and irritation from some of the sutures on her head. I’ve talked to the team in Dallas and we are treating both and watching them carefully. I’ve been frustrated by her lack of movement, even though I expected it. She was almost crawling before surgery and now she’s nowhere close. Today was the first time we could lie her down on the floor or for a diaper change without her screaming with anxiety. It’s been rough, but each day we see a little more of her. She even rolled over and pushed up like she wanted to crawl today. I know it will be slow getting back to where she was and I’m working on being patient. :)

Visitors!

Visitors!

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The main thing we keep hearing from everyone is how amazed they are at the lack of bruising and how discrete her scar is. It’s funny, actually, the bruises on her feet from the IVs are worse than the scar on her head! Also, Dr. Fearon is amazing and doesn’t shave any hair to make the incision. Here she is lying on the operating table with all her little ponytails to make room for the incision. Genius!

 

Poor little bruised footsies

Poor little bruised footsies

On the operating table

On the operating table

Today, Callie Anne turned 10 months old! She is also 1 week post-op. I can say that it has been much, much more difficult than I thought it would be, but we’ve spend a lot of time in prayer and know that we will get through it all. She is one tough little girl and continues to amaze us every day! Here is her 10 month picture and a comparison with her 9 month one. What a difference a month can make!

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1 month's difference!

1 month’s difference!

 

The time has come…(pre-op recap & surgery info)

September 21, 2013 by Jamie Cook

As far as days go, today wasn’t as bad as I had expected. We spent 8 hours at Medical City Hospital….lots of great visiting, several appointments, and a lot of waiting later…we are back at the hotel and ready for bed! I’m honestly too tired to write much, so here are some of the highlights.

We met our first Apert family in person today! We’ve connected with dozens of families online, but hadn’t met any in person until today. We LOVED getting to play with Salem! He’s full of energy and personality! It was so nice to talk with him mom and grandma and also with Stacy Horne, whose son, Seth, had surgery yesterday. We even ran into the staff from CCA (Children’s Craniofacial Association) while we were there. Then, this afternoon we got to visit for a little while with Margaret Dalton, whose daughter, Elizabeth is 8 and was at school.

Our next stop was Media, which is where they take pictures of all the parts of Callie Anne’s body that are “unique” They have already done it once before and will continue as she grows. This time, Daddy got to help with the modeling.

Then we went for registration and lab work. Callie Anne is NOT a fan of lab work and since she’s been having blood drawn every week for 3 weeks in preparation for surgery…she was not exactly cooperative today. Her nurse, Sally, even gave up on trying to get a blood pressure reading because she screamed bloody murder every time the cup squeezed her. Such a drama queen!!

Finally around 5:30pm, we got to meet with the surgeon, Dr. Fearon. He went over what would be happening before, during, and after surgery. Many people have asked what all this surgery consists of, so here it goes…

He will make a zigzag incision from ear to ear across the top of her head and pull down the skin to about the end of her nose to expose the bone. (don’t worry…that’s the most graphic part, so keep reading…) The neurosurgeon will make sure the dura, which is the outer most layer of the membrane that protects her brain, stays nice and wet while it is exposed. Dr. Fearon will cut the pieces of the bone needed to reshape and remodel the front of her skull and give room for her brain to grow. He will also use part of her skull to create a browbone (which she currently doesn’t have). He will use her own bone to add some to the bridge of her nose because when he brings out the forehead and creates the browbone to where it should be, the midface will appear much more “sunken in”. He will also “tweak” the corners of her eye sockets which will always tend to point down as her face grows. He doesn’t put in any metal or artificial pieces and will use dissolving stiches both inside and out. There will not be an helmet therapy or even bandages after surgery. However, there will be a LOT of swelling. We won’t know exactly how she will look for probably about 6 weeks when all the swelling goes down. The first few days will be the worst and her eyes will most likely swell shut…which will be terrifying for her, but we will do all we can to keep her calm. She will spend at least 1 night in the PICU and hopefully only one on the regular pediatric floor. If all goes well, she will be discharged on Wednesday! This guy has this surgery down and knows what he’s doing! She couldn’t be in better hands!!

This surgery will need to be repeated probably 3 other times as she grows to accommodate her growing brain and attempt to give her skull a “normal” shape and appearance. We also scheduled her 2 syndactyly release surgeries which will give her 10 fingers and 10 toes by Christmas! They will be Oct. 23 and Dec. 19. She’ll be in casts for both Halloween and Christmas. You KNOW I’ll be buying all kinds of awesome legwarmers and socks to cover those casts! (with matching headbands and bows, of course!)

So…that’s all for now. It was a long and emotional day, but overall, it’s all good. We know this is what needs to be done and we feel all the prayers coming our way. I’m still not ready for my baby girl to look different than she has for the past 9 months, but I’ll get over it. She will still have her amazingly sassy personality no matter what her forehead looks like!

Thanks for all the prayers! Enjoy the pictures from today

There's a connection I cannot explain between these parents!

There’s a connection I cannot explain between these parents!

Salem loved the "baby!"

Salem loved the “baby!”

Callie Anne wanted to lick Salem's beautiful fingers!

Callie Anne wanted to lick Salem’s beautiful fingers!

This kiddo is AWESOME!!

This kiddo is AWESOME!!

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Profile

Front View

Front View

Cute little feet!

Cute little feet!

Just chillin'

Just chillin’

In between blood pressure cuff squeezes

In between blood pressure cuff squeezes

Blood work is NO fun!

Blood work is NO fun!

 

 

A Few Words of Gratitude

September 16, 2013 by Jamie Cook

 

The days are closing in on us and we will be in Dallas for surgery before we know it. Thinking back to last November when Callie Anne was born and we began learning about all the medical care she would need, I can’t believe we have already made it to this point. We’ve come up against many, many obstacles and scary moments so far and have surprised ourselves with how well we’ve all come through them and we know this won’t be any different.

 

As we’ve been preparing for this, there have been so many emotions rearing their ugly heads. There is so much to be done: insurance companies to haggle with, surgeons, hospitals, anesthesiologists, and so many other medical offices to call, therapies to reschedule, pediatrician appointments to keep for blood work and shots, setting up the dog sitter, balancing the checkbook so we can afford a week away, making hotel arrangements, thinking of what all we have to take with us, the list goes on and on. With every new day and every new thing that must be done, I seem to break down in tears a little less. There have been a LOT of tears in the last week or so as I am beginning to wrap my brain around the fact that this is all actually  happening and not something we just talk about that will need to be done eventually.
“Eventually” is now.

 

So, as all of this is happening and the stress of 11 months now of being a single income family is forcing us to take a second look at some things, I can’t help but look back at all the people who have made it possible for us to get to this point. We truly could not have made it without the help of hundreds of people who have donated money, gifts, time, and prayers to our family so that we can provide all that little miss Callie Anne needs. When we found out she would be born with medical problems, we quickly began building up our savings account knowing we would need it in one way or another, but even with that (which didn’t last as long as we thought it would), we wouldn’t have been able to make it as well as we have without the generosity of others. Taking CA to Dallas for her surgeries was a big decision because it is extremely expensive. But, when it comes to the care your child needs which will greatly affect her for the rest of her life…you do what you have to do! We KNOW we made the right decision and that she is getting the exact care she needs. The only way we know to say “Thank You!” to everyone who has helped us to get where we are is to raise our daughter to help make this world a better place.

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In church this morning, our pastor, Don Morrow, preached about “Enlightening Yourself.” The main thing I took away from his sermon today was that God created us to have relationships. He expects us to use those relationships to learn from Him. Don said, “God speaks to us through other people.” This has never been more true in my life than since Callie Anne was born. As everyone knows, it was difficult for us to accept help at first, but we finally came to the conclusion that God was telling us to accept the blessings of others because that was His was of providing for us and allowing us to do what we needed to do to care for our daughter. Since then, He has spoken to us through so many people, it would be impossible to name them all. We have seen God’s love in so many ways since we were blessed with our sweet angel!

 

Another important note I took from the sermon this morning was, “Listen to what God is telling us through others.”  The outpouring of support and well wishes from loved ones and strangers is, without a doubt, God telling us that He has got Callie Anne in His hands and He will get her and us through these next few tough months. So many people may never know that God is using them to comfort us, and that’s ok. We are getting the message….loud and clear.

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Lastly, in the words of our wise pastor, “We are called to enlighten ourselves and then share that enlightenment with others.”  I hope that as we are learning so much about life and God’s love through our baby girl, that we can continue to share that with others and through our story, they will find something they can use in their own lives. I know this is already happening because I regularly get emails and messages that send chills up and down my arms about how someone has been touched by Callie Anne and our family.

 

These next few months of surgeries are not going to be easy. They will not be fun. They will not be pleasant. However, we will be looking for opportunities to see God at work in our lives and will enjoy sharing that with others. It is our hope that by sharing our ups and downs, others can see God’s love in our lives and that we are not just reading and believing, but LIVING in the way of our Lord.

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***On a side note…stay tuned for a blog post this week about Callie Anne’s upcoming surgeries!