We left without tears...

The last two weeks have been going fairly well. As you can tell from the earlier post, her incision is healing nicely. It is past the "WHAT IS WRONG WITH THAT BABY!!!" phase and into the "Oh, that poor baby fell and hit her head" phase. Today was her check-up with Dr. Sargent to check out the healing progress. I was pretty confident that he would be pleased, so I was truly at ease all day. We were running a little late so Mia and I got dropped off at the elevators while Maddie and Drew parked the car. We got on the elevator with a nice gentleman who began oohing and aahing over Mia. When I looked down at her expecting to see her normal grinning face I noticed her bottom lip quivering and her eyes beginning to water. I tried comforting her, but she remained very solemn. We got off the elevator and walked into the Medical Mall entrance. The sliding glass doors opened automatically and she jumped and grabbed tightly onto my shirt. As we continued to walk, her grip became tighter and tighter. Suddenly it hit me... she remembered. She had such a strong connection with this place and the pain she has gone through that she was already beginning to dread just being there. My heart was so saddened and empathetic for her.
Thankfully, once we arrived at Dr. Sargent's office, there were 4 little girls playing with toys. After closely watching them, she decided to jump down and join in. By the time Drew and Maddie arrived, she was laughing and playing with her new friends.
A quick hour and 45 minutes later, we were finally called back. I don't know if I could have stayed one more minute in that waiting room, so hearing her name was like music to our ears. Once we got into a room, Dr. Sargent (and his entourage) arrived very shortly. He took a quick look at her head and confirmed that it was healing well. He even said that I was "doing a great job keeping it clean and allowing it to heal." Then after an impressive 45 second consult, he was out the door and asking us to return in 4 weeks. Suddenly we heard Maddie exclaim, "WHAT! That's all?!?" We heard the entourage in the hall laughing at that remark and the nurse practitioner peak her head back in the door and let us know that gave her a good chuckle.
So, even though we wanted to hear "see you in 6 months", we will take "it looks great, see you in a month."
As we were getting on the elevator, we were all laughing and joking and Drew looked at me and smiled. "Hey... this is the first time we are leaving this place without mommy in tears." I paused and reflected on that wonderful thought.

What a difference 1 week makes...

WARNING... GRAPHIC PICTURE INCLUDED

I knew that children (toddlers especially) heal quicker than adults, but it is fascinating to see it happen before your eyes. Babies have more fibroblasts than adults, which are cells that lay scaffolding for new skin. This makes sense because the baby's skin has to keep up with its fast height increases and weight gains. I knew all of this but I still can't believe how quickly that huge crater in her head has healed over the last week.
It has now finally closed up and you can see that beautiful new skin beginning to form. There was a small area above the spot that looked like it was a little of the seborrheic dermatitis. So, I had Drew hold her and I took a pair of tweezers and just lifted it right off. It came up very easy and there were no problems underneath it. My goal is to keep it as picked over as I can so her doctor won't have to touch it the next time we see him!
Speaking of seeing Dr. Sargent... we were scheduled to see him today, but received a phone call and he was called away for an emergency. So, next Monday we will try it again. By then, we hope to hear, "Come back in 6 months."
I have included a few pictures of the incision... I even did a little side by side so you could see how fast she has healed in just 1 week. I also added a few more pics just to show you how stinkin' cute she is! We are praising our Savior and Healer! Thank you for the prayers!

Healing... Take 2

Life had calmed down a bit since The Great Scab Removal of 20-12. Poor baby slept for almost 14 hours that night and then took over a 3 hour nap that afternoon. I think all that sleep really allowed her body to start the healing process.
Each day is has gotten a little bit better. She has been staying at home all this week so we can keep the environment as "sterile" as possible. Thankfully, it is beginning to scab up which will ultimately seal it off and allow it to really heal. This kind of scab is the kind we want. It is the natural scab that occurs during the healing process of a wound. Drew is pleased that her skull is pretty much covered up. The first day after the scab removal, he stayed home with her. I was going over instructions with him about how to "nurse" the wound during the day and when I got to the part about applying a thin layer of Neosporin he stopped me. "Wait, do I put it on with my finger?" "Sure, just wash your hands first and apply a nice thin layer." "But, I might touch her SKULL!" I just laughed. This is definitely not his area of comfort, but he would do anything for his little girls.
I am including a new picture of the wound. Again... it's a little graphic. Not near as much as the first, but it's still a little tough for some people to look at. I had to snap it fast tonight because my camera battery was going dead, so it's a little blurry. The other picture is her sweet smiling face. What a picture of a precious little fighter that doesn't let all this strife in her life get her down! She's certainly my inspiration! Thanks for the prayers... keep them coming!

Oh my... I can see her skull

One of the major reasons I write this blog is to allow other families who will be going through a similar journey to have a better understanding of the process. Because of this, I want to make sure and stay honest during this time... good or bad. Unfortunately, today I must write about the bad.
If you have been reading the blog, you are quite aware of the "spot that wouldn't heal". It started several weeks ago and was looked at by several doctors and dismissed as a place that just needed more time to heal. So we waited... and waited... and waited. Today was her scheduled check up with her plastic surgeon and I couldn't wait to see his opinion on the "spot". Sadly, the news I was hoping for ("we've got some medicine to clear that right up!") was not what we received. Instead, he explained that the spot was a collection of dead skin cells, hair and other waxy substances that have built up around an area of the incision that had formed an open spot. This collection had formed a cap on top of the open spot and basically was keeping it from being exposed to air and therefore unable to heal. The only solution? Remove the scab.
I'm not going to lie. This was one of the more traumatic experiences of my life. They were not able to give her any pain killer for this process, so the procedure involved me holding her down with all my strength while the Resident armed with tweezers and a small pair of scissors cut away to remove the scab. She screamed until she couldn't scream any more. A good bit of the scab was removed by ripping at the hair and scab with tweezers. I have never in my life wanted so badly to take the place of my little girl. Instead, I could only hug her and hold her and pray that the doctor's hands would move swiftly and precisely. By the end of it, she and I were both drenched in sweat and Maddie and Daddy were paralyzed with unbelief. Thankfully, it was a successful removal, but I must admit that it is hard to look at. Even now, I am sobbing as I write these words. That scab revealed a very deep wound that upon closer view exposed a tiny white spot. "Oh my... I can see her skull" I mumbled in disbelief. They cleaned out another spot near her ear (thankfully this one was was quicker) and it this one exposed a nice pink spot below the smaller scab.
So, what's the plan now? This might surprise you, but we are to keep it open and exposed to air. He doesn't want us to cover it unless she is in an environment where it can get dirty. Keep Neosporin on it and rinse it in the bath each night. In one week we go back to have it looked at again.
Please pray that her wound would heal quickly. Please pray that there are no other complications and that we can start to truly put this all behind us. Please pray that God would continue to give us strength and that He would allow me to fully trust in his path for our lives.
I have posted a few pictures below. Please understand that these are pretty graphic. Again, I want to be honest about this process, so I think the pictures are necessary to paint a true picture.

The Journey to ONE

My sweet baby girl turned one years old. I would like to say it just FLEW by, but it really didn't. Each day of Mia's sweet one year of life always had a heavy feeling to it. I hate to even admit it, but there were times that I wondered if I would only get to enjoy her for one year on this earth. I mean, let's admit it. There are major risks involved in a 4 hour cranial reconstructive surgery. It pained me to think that way, but it was my reality. But here we are... and little lady is stronger than ever.
I can remember telling Drew just weeks before her surgery that I would close my eyes and imagine myself at her birthday party singing "Happy Birthday" and watching her dig into her cake. I couldn't help but to cry tears of joy when that time finally came. To see her sitting in her highchair with that slowly fading zig-zag scar laughing and shoving cake in her mouth made me one happy mama.
Unfortunately, she has one small thumb sized area on her incision that is taking a LONG time to heal. Today at her one year check up, Dr. Good didn't seemed concerned about it and after noticing a bit of seborrheic dermatitis behind her ear (inflammatory skin condition that causes cradle cap and dandruff), we both had a lightbulb moment and think that this could be what is causing that area to crust up and be slow to heal. His advice? Leave it alone! So, I will!
Otherwise, she is great. She started walking around 11 months and is pretty darn good at it now. She might stumble and fall a little, but she is quick to get up and keep going (pretty close metaphor to her first year of life!). She is saying the typical "dada" and "mama" and even gave us a cute "uh oh" the other day. She even has an "evil dada" voice... so stinkin' cute. If you haven't heard it, you are missin' out! She knows and uses 5 signs ("more", "please", "thank you", "all done" and "paci"). Her sign for "more" is used very often as her appetite is insatiable. I caught her on the video monitor on Saturday morning sitting in her bed feverishly signing "more, more, more". Funny girl.
At her appointment today, Dr. Good said, "well, you know I have been waiting on my third." I looked at him with confusion until I realized what he was talking about. In medicine, there is a theory that things always come in threes. I can remember in days of working at the hospital that when a patient would pass, we would always be waiting for two more patients and it would typically always work out that way. So, he goes on to tell us that he think he found his third cranio case. A little 2 month old girl. He is hesitant to tell the family yet because he isn't certain. He went on to ask if we would be open to giving out our number to the family if they wanted to talk and get counsel from someone who had been through it! I was so excited to tell him "YES"! I am thrilled about the possible opportunity to get to minister to another family! Of course, my prayer is that the diagnosis turns out to be normal, but would be thrilled to help them out in any way if it does turn out to be craniosynostosis.
We would be honored if you could keep sweet Mia on your prayer list, especially praying for her incision to completely heal and stability while continuing to learn to walk! Also, please be in prayer for this new family and our potential opportunity to minister to them!

"Drew, she's climbing the stairs again!"

Well, it's been over 4 weeks since Mia's surgery and she's impossible to slow down.  Her scars are slowly fading and she's just enjoying life.  No major issues, just a small area on her incision that is having a tough time healing.  It has been leaking a little clear/yellow toned fluid near the small soft spot we were concerned about earlier.  That spot turned out to be an area where the bone had been cut, so it was normal to be soft.  Dr. Good, her pediatrician, was pretty confident that the leaking of fluid was just because of that spot and the deep sutures that were in the spot.  Good news was that she didn't seem to be in any pain over it, she has not run a fever and any leakage would get crusty- all things that ruled out it being spinal fluid.  So, even though it is an ugly looking spot, it does continue to look better each day.
Her hair is slowly covering up the incision which has slowed down the odd glances and whispers in public.  Since they did shave her ear to ear around an inch thick, her hair has always been in two sections- a front section and back section.  The back section is growing straight up right now, so her hair lays nice and flat until about half way and then you see the cutest horizontal mohawk.  Cracks me up. 
She is two weeks away from her first birthday and is in the "learn a new trick everyday" phase.  Her newest?  Every time she sees Belle and Dixie (our dogs), she attempts to bark at them.  Adorable.  Her walking skills are getting better and better, too.  She's about 50/50 right now with walking/crawling.  Her first attempt is always to walk, but once she trips, it reminds her that crawling is a lot faster and more efficient. 
God continues to bless us by bringing people in our lives who have been touched by Mia's story.  I was contacted by a friend who has a co-worker that would like to speak to us because her grandson will be undergoing the same surgery as Mia.  I was also emailed by a high school friend who shared my blog with a friend in Montana who's son will also be having surgery soon.  It has only been 4 weeks and Mia's story is already encouraging so many others.  The coolest story happened this past weekend.  Drew decided to take the girls to play at the mall this past Saturday since it was pretty cold outside.  He sat on the side benches watching Maddie and Mia play when he overheard two women identifying Mia.  He assumed it was a friend on mine, but found out quickly that it was a divine meeting.  The women were a mother and daughter and the mother explained that her other daughter had a soon who also had craniosynostosis and would have to also have surgery.  They had found out about Mia and had been reading my blog!  They just happen to be sitting in the mall when they recognized Mia from her pictures!  Drew was able to talk with them for a good while, and they were tickled to see Mia's progress.  We were so thrilled to know that Mia and her story had been a comfort and encouragement to them!  I absolutely cannot wait to see what else God has in store for us in the future!  This little girl has been an inspiration to me, and I know she will be to others.  God has certainly blessed our family, and we cannot wait to share that with others!

We continue to Praise!

Things have been pretty quiet since my last post.  Since being able to sleep normally, Mia is back to my incredible sleeper.  Drew and I got so tickled the first time she was able to sleep without the car seat.  We put her down and she looked at us with confusion... then plunged into her pillow like it was a swimming pool.  We watched on her monitor as she sprawled out and cherished every square inch of her bed.  The first night required a few late night paci plugs, but by day 3 of sleeping normal she made it to sleeping through the night with no problems.  In fact, lately she has been sleeping to at least 8:30- 9:00 each morning.  Her appetite is also in full swing.  She is sucking down all her bottles and is eating everything in sight.  Thank you for your prayers about this, but you can stop now.  Otherwise, I might need a second job to fund her appetite ;). 
Her incision is looking better and better each day.  Since getting the release to allow her to return to being in public, we are surprised about the boldness of people's curiosity.  Doesn't bother us... we love telling her story and opening up a conversation about God's mercy and healing in her life.  We were at Moe's eating a few days ago and one of the employees began cleaning the table next to us.  As he passed, he stopped suddenly and just blurted out "what happened?".  My first thought was, "uh-oh... what kind of mess had Mia made on the floor" (and if you could have seen how much she had smeared on her face, you would have thought the same).  Then, I realized he was asking about her incision.  I must admit, it is still in the scary looking phase.  We still have not been able to scrub it or do much more than pour water over it in the bath, so it still has the dark markings of dried blood and healing skin.  And the fact that it is cut in a zig-zag makes it even odder.  We were recently at the house of a high-school friend of Drew's and one of the kids stood over Mia with obvious confusion and curiosity.  As I approached her she says, "So tell me what happened to this kid.".  I explained Mia's surgery as best I could, and she replied, "well, I hope she grows hair fast to cover those marks cause it is creeping me out".  Out of the mouths of babes.  I got a good giggle out of that one. 
We are all getting use to the crazy zig-zag.  Maddie still calls her "zipper head", but it is slowly becoming a part of normal life for us.  I am also gradually getting use to the new shape of her head.  It suits her so much, and even think it made her look a little more like me.  After years of being told how much Maddie looks like her daddy, I relish in every comment of Mia looking like her mommy.
As her scar is healing, it is beginning to turn colors and I do my daily observation to check for infection.  I worked with heart patients (post by-pass) and saw scars every day, but adult chest scars sure look different than infant head scars.  And when it's your baby, every little red or puffy area has greater concern.  There was a small thumbprint size area on top of the incision where is was soft.  It was a little discolored and did not feel hard and uniform like the rest of the incision area.  I watched it each day and was encouraged by the fact that it didn't have the look of an infected area, wasn't painful and she wasn't running fever.  Just when I began to get really concerned, we got a phone call asking if we could move up our appointment with Dr. Strait (neurosurgeon).  A prayer was answered!  So, this morning the moment Dr. Strait walked in the door I skipped the normal greeting and pointed him to the squishy spot on her head.  He immediately dismissed any problem.  He explained that it was an area where Dr. Sargent had made a cut for remodeling in the bone and was an actual space/hole that would harden and close in another 4-6 weeks.  Exhale and smile.  That's exactly what I was waiting to hear.  I'm sure Mia was happier to know it was a normal spot so her mommy would stop shoving her head under a light and poking at her.
After commenting about how excellent her shaping and incision looked, he totally released us from his care.  We will continue to see Dr. Sargent, but as far as he was concerned, there were no neurological issues.
We go see Dr. Sargent in 5 weeks, and then I imagine the appointments will begin to slow down.  She will continue to see him until she is at least 4 years old, but will eventually be released from his care as well.  Even though it breaks my heart that she had to go through all of this, I realized how blessed we are that is was a condition that could be repaired and fixed.  There are so many precious children with conditions that have no fix, and I that is a sobering thought to me.
Thanks again friends for your prayers.  You have no idea how much of a blessing you have been in our lives!