God is Good.

So, to say September was a long month is probably one of the biggest understatements of my life. Below is a quick overview/snapshot of our month (I have included the fun and not so fun things). As you can see, September was a crazy month. I feel confident in saying that September 2013 has been the craziest month of my life thus far, and that Annie has been a trooper! How many of you can do all that she has done and still look so rested? :)

9/3: Annie's 4 month appointment
9/4: Annie's Pre-Admission Testing; Appointment w/ Dr. Goldstein; Lab Work
9/5: Family Photos!
9/7: Old Settlers Day Parade!
9/11: Infant Toddler Services
9/18: Annie's Chick-fil-a Spirit Night!
9/23: Pre-Op Appointment/Lab Work
9/24-9/27: SURGERY DAY/Hospital Stay


If you have grown up in the Church there is a, for a lack of a better term, "saying" that you might remember and it goes something like this...God is good, all the time. All the time, God is good. I have said this approximately umpteen times throughout my life and have always believed the words but never as much as I have in the last 160ish days. Chris and I have been truly blessed with an AMAZING support system! AMAZING does not even come close to describing our peeps! How does one thank individuals who have worked so hard putting things like a Chick-fil-a fundraiser, a 5k race, meals, a family photo session, and so much more together?? If you have an answer, please let me know. It really is so incredible, humbling, awesome, lovely, overwhelming, and cool to see God's work in motion! 

For those of you interested, I'll recap Annie's surgery/hospital stay as best as I can. To start off can I just say that time is a weird thing?! How is it that September 24th seems like a lifetime ago, but in all reality was only 14 days ago that I was handing my baby to the OR Nurse with tears running down my face--hardest thing I've ever had to do. 

As many of you know, we had to be at the hospital at 6:30am for Annie's 8am surgery. As usual, Annie was her typical rock-star-self, giggling and smiling as we met again with the surgical team. Dr. Goldstein went over (once again) what he would be doing during surgery; he reminded us that after surgery it would look like he "messed up" because he would have to bring the forehead out, giving the brain room to grow, which would make Annie's mid-face look underdeveloped. Dr. Goldstein also reminded us that the forehead would also recede over time and that is why he brings it so far out to begin with. 

After we talked with Dr. Goldstein, his resident, Dr. Chung, his PA, Angela, the anesthesiologist, the OR Nurse and Neurosurgeon, Dr. Hornig, we were escorted down the hall were we said goodbye to our Jimmy Neutron headed baby. Again, the hardest moment of my life! After we gave hugs and kisses, Chris and I (along with our family) went to the waiting room for the next 8 hours. 

If I had, had any doubts before about our choice in hospitals/doctors for Annie, surgery day definitely would have changed that. We got updates throughout Annie's surgery about how things were going, what was happening, when they think things would be starting/ending...it was great! The updates helped ease some of the anxious feelings--8 hours is a longtime! 

Annie's surgery took more then the initial quoted 5-6 hours, because of her "unique" head. Because there is such a variety in kiddos with Craniosynostosis doctors have to adapt to their patients. In Annie's case she has a rare type known as Kleeblattschädel--which we found out the day of her surgery. In layman's terms, Kleeblattschädel is the premature fusing of multiple or all cranial sutures. Annie has multiple fused sutures (not all) and her case is unique in that the sutures are fused in places and not in others that are usually associated with Kleeblattschädel--another piece to the already huge puzzle. 

Anyway...Dr. Goldstein came to talk with Chris and I as Annie was getting setup in the PICU. He explained everything that they did and that he was surprised and very pleased with the surgery. Dr. Goldstein informed us that he couldn't believe how good Annie looked. He even showed us a picture of her post-op and without any swelling. 

DISCLAIMER:This part might be a little much for some people but it's too cool not to share...

During Dr. Goldstein's surgery synopsis, he asked us to imagine Annie's brain having the same look as her forehead due to the way the bone was pushing into it. After that mental image he explained that once the bone was removed for remodeling, Annie's brain instantly "puffed out" (my words not his) into a more normal shape. Dr. Goldstein said two things regarding the brain, 1) it usually doesn't start to move/shape for a week or two after surgery, and 2) the sight of the brain being released of that pressure told him that we conducted surgery at just the right time! 

After giving Dr. Goldstein a hug we were able to go up to the PICU and see Annie. Although Dr. Goldstein had shown us a picture of Annie, it wasn't the same as seeing her in person. Only other Cranio Moms/Dads will understand seeing their child for the first time after surgery--what a very weird and surreal moment. I got to hold my little round headed baby. Though she wasn't thrilled about being moved initially she quickly realized who was holding her and calmed down--Happy Momma! 

Chris and I were lucky to get a Ronald McDonald room in the hospital for the first night. Even though we couldn't do much for Annie, it helped knowing we were right down the hall. [Side note: going from a King Size bed to a Full Size bed for even one night is difficult to say the least.] 

Annie was in the PICU for 24 hours before being transferred to a regular room. Although the constant one-on-one attention Annie got in the PICU was greatly missed, it was nice being able to come and go without signing in and out and getting a badge every time we saw Annie. 

Annie didn't start to swell until early morning the day after surgery--Chris and I were greeted by two peepers the morning after which greatly surprised us. Around 10am on 9/25, Annie's eyes began to swell. Soon she wasn't able to open them at all. However, on a bright note she was eating well and even taking a bottle! Given that I solely breastfeed, taking a bottle was a HUGE accomplishment. Some of you were specifically praying for the bottle feeding--thank you! Your prayers were answered! 

I won't say that seeing Annie in her swelled, hurting, and uncomfortable state wasn't hard on me, but it was especially hard on Chris. I think it's a father-daughter thing, but he had a hard time. From the day Annie was born I told Chris that babies are like puppies in that they can sense your fear/anxiety. I had to remind him of this again when Annie was without her sight for a couple of days. There were times that tension/emotions were high due to Annie being upset and not being able to console her right away. There were times that Chris and I even reverted back to the "why us" questions. Although, these questions are fewer and farther between we still have them--I hate to say it, but I think big, life changing things trigger these questions.

The evening of September 26th Annie was "opening" her eyes--they were slits but you could start to see her little eyeballs peaking through. By the next morning her eyes were still swollen and red but she was able to see. Dr. Goldstein, Dr. Chung and Angela came by to check on Annie Friday afternoon, told us she looked great (which duh, when doesn't she look great?!) and asked us when we wanted to go home. Chris and I were dumbfounded that everyone was saying Annie was ready to go home after having skull surgery 3 days before--crazy! Don't get me wrong, we were tired of sleeping in the hospital, eating hospital food, breathing hospital air but we were also a little gun shy about going home with a babe that had, had skull surgery 3 days before. After making our decision to go home, Angela (Dr. Goldstein's PA) came back in to Annie's room and told us that after Annie's surgery on Tuesday she went home to her husband and told him that they (Dr. Goldstein and his team, also known at the hospital as the Dream Team) were changing lives. She said, "I know that seems cheesy...", I stopped her and said, "It's not cheesy. It's true. Look at our daughter."
  Since coming home Annie has picked right back up with her hearty appetite. My little piglet likes veggies, fruit, rice and oatmeal cereal! The only thing that could use some adjusting is Annie's sleep. Before surgery she was waking up once in the middle of the night. Now it's back to every 3 hours. This Momma is TIRED!!

I know I sound like a broken record but it is totally amazing how fast Annie has bounced back after skull surgery. Annie is back to doing things like rolling over, talking to Bubba (aka Alli) on the phone, smiling, singing and has even added a few new things like holding and eating her feet, making faces, faking cries, and loudly yawning!
  Annie went to church for the first time since surgery this past week.  We had such fun watching and hearing everyone's reaction to her newly constructed, round head. Annie thrives on people interaction and was, I think, just as eager to show of her head as Chris and I were. Due to Annie's high volume voice--I have know idea where that comes from :) --I had to take her out of church for the last part of Ty's sermon.

As church let out, a young mother with a little girl on her hip approached me. She told me that her 3 year old daughter was diagnosed with Craniosynostosis when she was 3 months old and had surgery to correct it. Her daughter had Endoscopic Surgery (a minimally invasive surgery) shortly after being diagnosed and has been doing great ever since. I asked how long she had been coming to FBC. She said that she works at Madison Elementary School in Gardner, that she saw the flyer for Annie's 5k on a bulletin board, and that it's the reason that she and her family came to FBC. God is GOOD! She wasn't able to talk long but our conversation made my heart very happy. 

  Here are some pictures of Miss Annie Bananie--pre and post surgery! I will let you know that some pictures might be hard to see but I think it's important for people to see all the steps in our journey. Enjoy!

Annie and her care package from Cranio Care Bears.

Holding my girl for the first time after surgery.

5 Month Picture/One Week Post Surgery

Happy Girl!

 

 Cheering on our Pokes!

Sleeping at the Old Settler's Day Parade

NICU Reunion at Wonderscope

Just Walkin'

Annie with her Amy

   

Last pictures with Annie and her original head. :)

 

 

Reading her favorite book before surgery.

 

 

Day 2: eyes still open/mommy time

 

 

 

Day 2: eyes swollen shut

 

 

In our regular room (the sock was to protect her IV from scratching her head)

 

 

Eyes still swollen but she knows her Daddy's beard.  

 

 

 

IV's out and on the mend! 

 

   

Peepers are peaking through. 

 

 

 

 

 

Bustin' out of this joint! Special blanket from my co-workers from TFI. 

 

 

 

 

First night and next morning at HOME!

 

  

 

 

                                          

   

My Lil' Pumpkin at the Pumpkin Patch

 

 

One week after surgery

 

 

 

 

 

 

 HAPPY ANNIE!!

 

so much, so much.

So...Annie had a followup appointment with her plastic surgeon, Dr. Goldstein on Friday. The appointment was originally scheduled for August 15 but my "mommy radar" was on high alert when Annie became more upset (crying more) when we would cradle and/or I would try feeding her. Also, I thought that her head was starting to get harder in places that were always quite soft.
Annie's appointment was at Children's Mercy Downtown and started promptly at 8am...early morning for us all! The purpose of the followup appointment was for Dr. Goldstein to feel/push on Annie's head to make sure her brain was not under any pressure AND that it had plenty of room to grow. Dr. Goldstein did his 'thang' and believed that Annie's head was just as soft as it was when he first saw her in June but wanted her to get a new CT scan to make sure she didn't have any pressure anywhere else. Lucky for us Annie had fallen asleep just in time for the CT scan but woke up right as I put her on the bed to begin. Don't worry, Children's has thought of everything...the tech called in Barbie (yes, that was her real name) to keep Annie still during the scan with light-up toys, a colorful projection screen and her Disney Princess voice. Seriously though, I don't know if we could have captivated Annie's attention like Barbie did. Kudos. After the scan we returned to Dr. Goldstein's office to get the results--he was happy to report that the top of Annie's head was indeed still wide open allowing her brain plenty of room to grow. Although the top of Annie's head was in good shape, Dr. Goldstein was concerned about the thinning of her forehead bones and had requested a neurosurgeon to come over and evaluate Annie and her CT. Dr. Goldstein informed us that although there was a neurosurgeon in the hospital, he wouldn't be available until noon (at this time it was 11:30) and asked if we would stick around...of course we said yes! We almost couldn't believe we were getting to meet the neurosurgeon the same day we had a CT scan and saw Dr. Goldstein--usually these are three separate appointments. At noon, Annie saw neurosurgeon, Dr. Hornig, and he did his own evaluation of Annie's head. He was please with her mid-face and even mentioned her "great looking cheeks!" I immediately liked him! :) After a few minutes with the whole team, Dr. Goldstein informed us that he would be going over Annie's scan again and call us early this week to let us know when surgery is to be scheduled--He believes surgery would need to happen in the next 4-6 weeks. YIKES! Chris and I are ready to get the process started but anxious about it at the same time. We know and understand that the surgery HAS TO happen but it's still crazy to think that in a few short weeks my baby will be having major reconstructive surgery. 


Fast forward a few days...Monday came and went with no call from Dr. Goldstein's office. Tuesday, however, was Children's Mercy phone call overload day. First, I received a call from Laura, our Genetics Counselor from Children's Mercy informing me that the DNA testing was back and that Annie does have Saethre-Chotzon Syndrome. I have very mixed emotions about this diagnosis. Although it's nice to have a name/diagnosis for what's going on, there are still a lot of unknowns. According to the test results Annie has a "full gene deletion involving the TWIST gene", which in layman's terms means that she did not get part of the TWIST gene from either me or Chris. Laura informed me that Dr. Ardinger (Annie's Geneticist) has requested additional testing to evaluate the gene before and after the TWIST gene to see if there were any other deletions. After this testing is completed, Chris and I will have our DNA tested to see if 1) this was passed on to Annie from one of us, or 2) it was a "random" mutation. I then got a call from Jamie, from Dr. Goldstein's office informing me that Dr. Goldstein had put in an order for Annie to see an ophthalmologist and that she had an appointment next Monday at 10:30 with Dr. Waters. The appointment with Dr. Waters will determine if Annie has any pressure behind her eyes. Jamie said that if the appointment indicates any pressure, Dr. Goldstein will most likely move up the surgery date. And to add to the above information, I got a call from Kim, Dr. Goldstein's surgery coordinator informing me that Annie's surgery is scheduled for September 24. Kim then went on to tell me that on September 4 Annie has appointments to meet with the preadmissions department, see Dr. Goldstein for 10-15 minutes and get lab work done. On September 23, Annie will have to have more lab work done and go to her pre-op appointment...it's definitely getting real! To be honest, I'm surprised that I remembered that much--Kim is going to be sending a letter with all the information/appointments and times. 

So, if the last few months haven't been appointment, information and unknown territory overload enough the next month is going be crazy! I must say, we have a great support system--family and friends have been amazing and I don't know what we would do if they weren't around. 

Ok...enough about medical stuff. Annie is starting to roll from side-to-side--she's had a few rollover moments but nothing intentional, yet. She is very observant and loves watching people talk. She especially loves watching and listening to Daddy sing silly songs! She loves baths...so much so that she'll scream when we take her out. She LOVES being held facing out to see the world. She reaches for, grabs and eats all toys. She sleeps anywhere from 4-6 hour stretches. We've even had a couple of all nighters.  She fake coughs AND is starting to fake sleep. She gives kisses and is a total thumb sucker! She is standing up on our legs. She LOVES ceiling fans--moving or not. She grunts when she wants something or we're doing something she doesn't like. I love my girl--she has such personality!