9 Year Cranioversary

9 years, how can that be? 

This Cranioversary was the first one where it felt like it was "so long ago". As my precious Filly girl is getting older (way too fast) the memories of the diagnosis, fear, worries, questions, doctor visits, test/labs, surgery, recovery, what ifs and unknowns seem further and further away. 

These days this stunning little girl is a piano playing, co-captain cheerleader that excels in school. She's always up for learning/trying something new and taking things head on even if she's out of her comfort zone. She does it all with confidence, giving it her all! She has the most loving heart, is full of curiosity/questions about anything/everything, and lives life intentionally.

I'm a proud Mommy. I am blessed. I am grateful. I am thankful. She is a Cranio Warrior!!!

8 Year Cranioversary

8 years... 

Last night my sweet Filly girl was giddy about her Cranioversary after realizing it was the next day. It's a day of celebration!!! A day to reminisce (sometimes with tears on my end) and be thankful for the team that allowed her to be here today growing and thriving like she is. 

While being a mini me (lord help us all), she is also her own little person full of intelligence, wonder, kindness, comedy, spunk and sass (in all the best ways). She lights up rooms and fills hearts...  she is truly a gift to us all. She is everything I always knew I always wanted. She is my I Love You xo. 

There are Cranio babies and children having the same or similar surgeries every single day. We call them Cranio Warriors. GOD BLESS them all and their families!!!

7 Year Cranioversary

7 years...  Today she was so proud to share with her teacher and classmates that it was her Cranioversary. When asked, she explained that she was born with Craniosynostosis and at 4-1/2 months old had to have surgery so that her brain could grow. She is so proud and I love that!!! 

She has a math teacher this year that when the kiddos accomplish something, she tells them to "kiss their brain"...  oh how we have embraced that beautiful saying! She never takes a day for granted, always gives 100% and is authentically her full self all the time.

Every morning when I brush/style her hair, I see her scar...  her Cranio tiara as I have always called it. I thank GOD every single day for putting her in the hands of some of the most amazing medical professionals so that I can watch her become this breathtaking little human being. I am forever in awe; I will never be able to find words that can articulate how very much I love my precious Filly girl.

6 Year Cranioversary

6 years!!! I remember Dr. Moss saying "it's the bone not the brain"... this little girl dances around the living room, bursts into song putting on a concert, concentrates on a game of chess, comes up with the craziest stories to tell, does her math work, reads her books, asks a million questions about anything and everything because she just wants to know and oh so much more... not a day goes by where I don't thank the surgeons and their team for taking such amazing care of my precious.

She has the most loving heart, tightest hugs, contagious laugh and is my world!!! I'm so blessed!!!

5 Year Cranioversary

Five years...  five years ago today my precious baby had major surgery, a blood transfusion and a really rough recovery week in the hospital.

These days my baby big girl is so full of life not missing a beat; talking non stop, dancing, acting, listening to and playing music, swimming, biking, roller skating, rock wall climbing, trampoline foam pit jumping, and so much more. She's amazing!!!

My precious Felicity Grace is her truest self always!!! She has a brain that is always thinking, has a heart that is always beating love and a spirit that is contagious. I am so blessed to be her Mommy!!!

4 Year Cranioversary

It was just 4 years ago today when I handed over my 4-1/2 month old precious baby girl; cried, prayed and held my breath until just hours later her amazing/talented surgeons came out to say it all went great. Then we had a very long week at the hospital with highs and lows until we were able to go home.

Today was full of  non stop talking, laughing, playing, loving and etc. I am forever in awe and proud of my miracle baby-big girl Felicity Grace. I am eternally grateful to have the honor of being her Mommy and never take one moment for granted!!!

Last post-op follow up

It's been 2 years since the last follow up and almost 4 years since her surgery. It was 4 generations on this road trip.

Dr. Moss (her neurosurgeon) said Felicity looks great!!! He said that unless she has any delays once she's in school or has any seizures, today was her last appointment. She has zero restrictions; to make sure to wear a helmet of course for sports, bike riding, etc just as all children should. It was wonderful getting to see some of the very important people I hold dear to my heart for what they have done for my girl. They have my utmost respect and gratitude. I finally got pictures with them as previously it always slipped my mind until we were already home.

 

(Felicity and Dr. Moss)

(Felicity, Lindsey and Joyce)

Typically our next stop would be to see Dr. Joganic (her cranio facial surgeon) and his nurse. Sadly, he passed away this past October. While we very much missed him today, he's forever in our hearts!!! I regret never getting a picture of Felicity with him but have shown her his picture.

So, we will continue to celebrate Felicity's Cranioversaries each year and send yearly pics to our medical family to show them our love and appreciation. My heart is so full... I am truly blessed and in awe of my precious Felicity Grace. I'd like to thank everyone for their continued prayers, concerns and support for my baby-big girl.

3rd Year Cranioversary

Three years...  I still have the outfit they had me put her in prior to surgery, her hospital wrist bands, her hair that was cut that was replaced with her beautiful princess tiara scar, the staples that were removed and the emotions of every single step of the way.

Today on my precious Felicity Grace's 3rd Cranioversary, she wore her shirt that says "Once upon a time lived a princess, beautiful and brave"

My miracle baby-big girl leaves me in awe and so incredibly proud, everyday. She is truly an amazing human being and I am so gratefully blessed that I have the honor of being her Mommy.

2 Year Cranioversary!!!

2 years...  Oh my heart/world, I am truly blessed!!!

When I look at pictures from that day/week, I feel every emotion as raw as it was then. I am so eternally grateful for every single medical professional, employee, volunteer, family member, friend and other Cranio families that were with us on this journey. It was their expertise, knowledge, compassion, care, support and prayer that has gotten us to where we are today. 

Yearly (almost 2 years) post-op follow up

It's been a year since we've seen Dr. Moss and his team and Dr. Joganic and his team. So today we took a road trip for  Felicity's yearly follow up appointment with each Surgeon.

She is doing great and I have zero concerns, but I was still unable to sleep last night and had "what if" unknown fears in the back of my mind as any Mommy rightfully does.

Both Surgeons said she looks wonderful and are very happy with the results from her surgery!!! The one spot that had a hole seems to have filled in so that is no longer a concern, thankfully. Dr. Moss said there's absolutely no reason to do another CT Scan, a question I asked. Dr. Joganic checked her teeth because the top and bottom jaw can sometimes be affected but she lines up great. I'll keep my eyes out for any headaches, eye site issues or speech concerns along the way and let them know if she has any. To my surprise they said they don't need to see her again for 2 years (vs every year like they previously told me), unless I have any concerns. 

It was a long day, a lot of driving (thanks to my Momma for chauffeuring us and always being right by my side every step of the way), two appointments and a pit stop at my corporate office but, it was a spectacular day!!! My precious baby-big girl absolutely amazes me; I am in complete awe of her!!! 

So, my next post will be in May for her Cranioversary and then if all goes well...  not for 2 years :) I'd like to sincerely thank each of you for the continued prayers, I am eternally grateful and appreciative!!!

Happy 1 year Cranioversary!!!

One year ago today...  wow, it feels like forever ago yet just like yesterday. I am truly in awe of how incredible my precious Felicity Grace is. I am infinitely blessed, grateful and proud to be her Mommy. 

(Early morning lovin' is how we start each day)

9 month post-op follow up

Check up time again!!! Three generations back on the road heading to Mesa and Phoenix.

Everything has been going so well and I know the surgical teams will be pleased but, I still had the nerves of worry in the back of my mind and a little part of me was trying to prepare for a curve ball just in case.

First stop was Dr. Moss' office where Lindsey examined her with a visit from Dr. Moss himself. They said she looks great, her measurement is on target, the incision healed wonderfully, the scar looks great and her head and forehead look perfect. She still has a slight dent above her right eye but overtime that will become less and less. It's really not that obvious, but her "storks bite" birthmark doesn't help to not bring attention to her forehead. However, it's fading over time and her gorgeous lil eyes are a great distraction lol. 

They said there was no reason to do a follow up CT Scan to see if everything (the bone and sutures) looked good because if there was a problem, they'd be able to see it just looking at her head shape and Lindsey said it feels and looks great!

It had been a couple weeks since I had felt the spot where there was a hole in the bone so I wanted to show them in person (I had previously sent pictures and talked with them about it via email and telephone). Not only did I have one heck of time finding it (I used her scar as a guideline and that is becoming more and more difficult to point out which makes me happy on her behalf) but, I found that the hole IS filling in!!! Oh sweet joy :) 

Dr. Moss and Lindsey said to make a follow up visit for 6-8 months but if everything is going well during that time I can move it to 1 year and then as long as everything is going according to plan, we'll just have follow up visits once a year until she starts school.

After a pit stop at my Corporate office to see a couple of her Aunties, it was lunch time in the car in the parking garage.

Next up was our appointment with Dr. Joganic. He too said she looks great!!! He measured her head circumference said it was right on target. 

At first he said we could follow up at 6 months and then said that if everything is going well that we really could follow up in 1 year. So, we'll continue with the tag team of seeing both surgeons on the same day when we do have follow up appointments. We'll also continue seeing Dr. Joganic every year until she starts school.

Felicity got a thumbs up from everyone on her healing and the shape and growth of her head and forehead. WooHoo!!! My beautiful miracle baby makes me so proud, she is truly so amazing!!!

If everything continues to go as it has been, we'll see you in a year :) Thank you again to everyone for the continued prayers and emotional support!!! 

It's the bone, not the brain

After Felicity's surgery, I said I was happy she wouldn't have to live with Craniosynostosis every single day of her life. But sadly she has.

Milestones ugh!!! Almost daily I have people ask me if she's hit this one or that. If she hasn't YET, I see the sympathy on their face or hear it in their voice. They automatically assume it's because of the Craniosynostosis that she hasn't done this or that yet.

Let me repeat... It was the BONE not the BRAIN. In her CT Scan, her Neurosurgeon confirmed that her brain looked normal and great!!!

It's hard enough with Moms competing on who's child can do this or that at the earliest stage of life as possible, but then throw this in the mix and geez, talk about pressure on a baby/child and Mommy. Additionally, though she had Craniosynostosis she does NOT have one of the syndromes. 

Because of the concern some show, I admit it has affected me and I too have then questioned the speed of her hitting milestones. And then my awesome parents bring me back to reality. They remind me that each child develops at their own speed. That my daughter is no different!!! They give me examples of people they've talked to or meet who's children or grandchildren weren't freaks of nature and walking at 3 months (not intended to offend) but finally did walk at 16 months old without the cause being anything but they just weren't ready sooner.

Now don't get me wrong...  I greatly appreciate the prayers, concern and follow up in regards to my daughters surgery. Her development however has nothing to do with it. She is hitting her milestones on track in the time frame that is expected. She has a terrific Pediatrician that is nothing but pleased with her growth and development!!!

Hole in the bone

Well, I knew it was a possibility... But, actually knowing it's there and feeling her pulse when I put my finger on it scares me a little (more than a little obviously)

How much caution do I need to show? Will it fill in over time and if so how long does it take? If it doesn't fill in, that means a surgery and when would that be?

Okay now breath...  This does NOT mean the surgery failed in any way! This was always something that could happen and it has/is. However, it's so minor. I spoke with her surgical team and they assured me that over time the bone could fill in on its own so we just give it more time, she's still healing. If it doesn't, we'll take it from there; the surgery to fill in bone is less invasive and if it needs to be done, it will be. 

We continue with our "normal" life as usual :)

3 month post-op follow up

I can't believe it's been over 3 months since her surgery...  It feels like it was forever ago and at the same time it feels like it was just yesterday. In the back of my mind I had to prepare for the possibility that they could say there was an issue but, I knew it would go well because she has healed so well and is doing amazing. Felicity is now 8 months old and doing fabulous; she's hitting all the milestones as they put it and most important is healthy, happy and thriving!!!

This morning we road tripped it to Mesa and then Phoenix. Our first stop was to see Dr. Moss and his team (Lindsey and Joyce). They commented on how much she's grown, how much hair she has and how great her head and scar look. 

From there we went to see Dr. Joganic and his nurse (I'm blanking on her name at the moment). He said her head/face look great. He said she's grown and changed so much and still has more ahead of her. It can take years for everything (the left and right side) to align and be more symmetrical. That is great to know but it is cosmetic. All that matters to me is that her head now allows her brain to properly grow. He also said the he feels no holes so it looks like the bone is growing everywhere it needs to. I asked about the side effects if she happens to bump her head, especially since she's pulling herself up and hasn't mastered balancing yet. He said if she bumps her head (where the work was done), she can and most likely will get a pretty good sized bump that will stick around for a while but after a few years that will stop happening. Finally, his nurse took pictures to add to Felicity's file that contain her pre-surgery pictures.

We go back in 6 months for another follow up with both surgeons. I want to thank everyone that continues to keep my precious Felicity Grace in their thoughts and prayers and takes the time to read my updates. We are forever grateful for your caring support!!!

Staples removed

Fifteen days after surgery and we road tripped it back to Mesa to get Felicity's staples removed.

Lindsey was so gently, quick and wonderful removing all 46 staples (I kept them of course). As to be expected, she cried and let it all out but once it was over she was better again; she did amazing! Dr. Moss confirmed that the bump I can feel in the middle and right side of her forehead are the stitches that will dissolve within a few weeks (I had been worried it was bone). He also said she still has a little swelling that will continue to go down but she no longer needs to sleep with her head elevated. Additionally, he said that it's over time (weeks, months, years) that the cosmetic results will be visible.

(Pics were taken after staples were removed, once we got home and prior to a bath cleaning the area)

Felicity slept all the way home. I gave her a Tylenol and bathed her once it kicked in just incase she had any sensitivity. It's the same soap and water rule and keeping the incision/scar out of the sun. She did great, just as she did when the staples were in; it doesn't even phase her. My precious Felicity Grace truly is remarkable!

We go back for a follow up in 2-3 months (I'll be making the appointments tomorrow with Dr. Joganic's office and then Dr. Moss' office)

First week home

Sleep... what's that?

Felicity has been in good spirits for the most part. However, my sweet baby has had a rough time sleeping. She used to wake 1 or 2 times a night to nurse, gone right back to sleep and always woke quietly with a smile. Since the surgery, she's been waking up 5-6 times a night and always immediately moaning and crying even before she's awake. It's such a helpless feeling. All I can do is immediately pick her up, comforting her by embracing her and attempting to soothe her with a song or story or just I love you's.

Other Moms have said their children have experienced the same. Possibly the surgery itself, pain or coming off of the anesthesia. Day by day it gets better.

We were sent home with Tylenol as the prescription and told to give it to her as needed. Thankfully she hasn't needed it but a couple times. I especially didn't want to give it to her as a dependency to sleep because that's when her body is the most relaxed and at home she's not hooked up to any machine that will alarm me.

We came home Saturday early evening and we were back to our normal schedule on Monday. As much as I would've loved to stay home with her longer, I believed it would be better for her if we "got back on the horse" if you will. Knowing my Mom is taking care of her while I'm at work is what enables me to be okay with not being with her. My Mom is an extension of me.

Her swelling has gone down, she plays like always, is talking up a storm and is doing great! She also has been at times only wanting me to hold her and when playing, will automatically cry if she's over it. These are new behaviors and it's tough to say if it's because of the surgery and healing or is it because she's just turned 5 months old. Either way, this too shall pass. So until it does I will soak up any extra moments she wants to be held, hugged and coddled. When she out of nowhere for no reason bursts into a whimper or tears, I will immediately make it all better because I'm her Mommy and I am her safe place.

Let me be clear; Felicity had surgery not for cosmetic purposes, but to enable her brain to grow properly. She may still have a slight dent above the right eye and her right eye may always be larger than her left but that's all superficial. She is perfect, she is beautiful, she is flawless!!! She will always know and believe that; shoulders back, head held high, proud and unapologetic while still being humbly grounded. 

Felicity's Tiara

I call it her crown with jewels; a tiara. Looks like she's a princess after all :) Or it could be called her halo...  Oy vey, I can already see this backfiring on me in her teen years lol.

Her bandage was removed the day we were leaving. It looked scarier than it really was!

Jessica, her nurse helped me bath her (my precious was a hoot barely fitting in the bumbo). She did so good letting us tend to her head, never flinching or even realizing what was going on. It was just bath time for her. 

I  still don't know how many staples she has. My count got to 39 but she was asleep in my arms so I wasn't able to finish. I figure I'll get the count when they are removed on the 20th. Per Dr. Moss, I've been washing her head once a day (he said I could do it twice a day but I'm not able to with my schedule). I asked my Mom to help me so for the first 4 days she met me at my house and assisted. I felt bad because there really wasn't anything for her to help with but having her there for the god forbid "just incase" is really what I needed. My daughter loves her baths and splashing and is quite the wiggle worm...  so trying to tend to her incisions and staples gets tricky. 

A lil practice builds confidence and after that it's all second nature. I have worried about a few spots that still have dried blood because I don't want that to compromise her hair growth in those areas. I emailed Dr. Moss' head nurse Joyce and she said it'll be fine and just continue doing what I'm doing. 

The staples haven't prevented Felicity from nursing or falling asleep in my arms. She's touched them a couple times but only by habit of rubbing her ear and head when she's falling asleep. I was worried about dressing her in anything that had to go over her head but realized (a little later than I should've) that as long as it cleared her head completely, it was okay.

I can't believe very soon they'll be removing them...  I'm so not looking forward to that but just like everything she's faced, Felicity will do awesome!

Banner Health Cardon Children's Hospital in Mesa, AZ

My praises go out to this hospital and each person we've come into contact with during this journey.

First and foremost, they took care of my precious with gentle hands and a caring heart. They always let me be right there in the midst of it all, letting me take the lead and allowing me to be as hands on as possible. They taught me how to administer medicine and bath her incision with full support and encouragement. They tended to not only my daughters needs, but also looked out for me and my Mom. 

Though I brought my own pump, they offered theirs (it's the highest grade) and they let me keep all the attachments (they were brand new and compatible with my machine). Because I breast feed, all of my meals were free and they gave my Mom a button to wear to receive discounts in the cafeteria. They had a snack room on both floors that were available to us at any time. Though I brought my own so I didn't need them, I was offered pajamas and toiletries to shower. Most important, there wasn't a rule about visiting hours so my Mom was able to come and go 24 hours a day. Even more important, they would not allow visitors unless I authorized them; that protection is so important!

The staff at the front desk, the staff in the waiting room before getting her CT Scan and pre-op bloodwork, the woman that did her CT Scan, the three ladies that drew her blood, the staff in registration, the staff that assisted us during the wait during surgery, the staff in the cafeteria, the housekeeping staff, the room service staff, the lady in the gift shop, the lady that called a week later to check on us and our experience and every single doctor and nurse that came in contact with my daughter in the PICU and 7th Floor... AMAZING!!! Besides one glitch, our experience with Banner Health Cardon Children's and it's staff was phenomenal!!! 

I wish I had logged the name of each person but unfortunely I didn't always remember to; I did get a few:

Misha (the very first nurse that took care of Felicity; I adored her so)

Julie

Justine (though we had her for only a brief time before moving, she was super sweet)

Aimee 

Dionne (she came on after a really rough day and made everything better again)

Laura

Kimberly 

Johnie (she actually looked up Craniosysnotosis learn and then talked with me about it. Once Felicity's eyes opened, she asked to hold her; touched my heart)

Patrick (he did a little skit for her to distract her while taking her vitals)

Jonwana

Jessica (she told the funniest stories)

Terry

Debbie

Dr. Farrell

Brittany

Necsi

I am eternally grateful!!!

Support and Prayers

This journey has been, still is and will continue to be flooded with an abundance of mixed emotions. I can't stress how important it is to have support. Some will come to you, others you may have to go out and seek. 

From day one my folks have been my main supporters. They have cried, laughed, listened and talked with me along this journey. My Dad and Mom have been amazing!!! Without hesitation, my Mom has been by my side every step of the way; attending every appointment and being there for the week Felicity was in the hospital. My Dad had to keep the wheels turning at home but was always on the other end of the phone and would be with us in a heartbeat if asked. I'm so blessed my daughter has these two amazing people she calls Grampee and Grammee in her life!!!

It wasn't until the night before Felicity's surgery that I posted my blog and went "public" on Facebook about the journey we were on. Prior to that, I had only chosen to tell a select few family and friends. I chose to only discuss everything on the days of her doctor appointments and a couple times here or there. It was very important to me to be in the moment with my daughter every chance we had and not let what we were going through and the surgery she was going to have, to compromise any of our time together; I didn't want her to sense any fear. 

From the ones that knew from the beginning to everyone that knows now (those I know personally and those I've never met), the support, prayers and encouragement has been wonderful and is so very much appreciated! My family and friends - friends of my family and friends - each member of Felicity's surgery team - every doctor, nurse, employee, volunteer and family at Banner Health Cardon Children's Hospital that we came in contact with - everyone on my Facebook page - all the families in the groups "OUR CRANIO CIRCLE", "Cranio Kids- Craniosynostosis Support" and "Craniosynostosis Support" on Facebook that have gone or are going through the same or similar journey - Cranio Care Bears - my work DLW and my co-workers. From my heart, I sincerely thank you! 

To each of you that has read, continues to read and those that have also shared my blog with others, I truly thank you. 

(The care package was from Cranio Care Bears and the flowers/balloons/bears from my work)

Staying another night

Felicity seems to be having an off day today. Her vital signs are good but she's a lil quiet, sad like and sleepy today; completely understandable after all she's been through. I can't imagine the headache alone that she must have. Since we live a few hours away from the hospital, we are staying another night just to be safe. I'm sure she also misses our home and daily routine.

Her swelling is decreasing but it will take a few weeks or so to be completely down but she's healing  up wonderfully. All of the doctors and nurses that have seen her say she looks great! They are also impressed by how little swelling she's actually had and the lack of black/blue bruising. The work Dr. Moss and Dr. Joganic did is beautiful; they are so truly talented...  and they kept my baby looking like my baby which was so important to me. 

Both eyes are open

Felicity still has swelling but both eyes have now opened. Little by little her beautiful blue grey eyes are sparkling more and more.

Her vitals are still doing great. She was only on Motrin and one dose of Lasix until I asked that she also get a dose of the Tylenol to cut the edge (the nurse had stopped the Tylenol because she said she doesn't like to give babies medicine via the rectum). She's eating well; not as much as before but now that she's feeling better, she should start picking up. It'll also help once we go home and she's back to her familiar surroundings and routine.

The hospital provided a volunteer offering Reiki sessions, so we had one. It helped us stop and be completely in the moment.

Now that she can see, my curious lil baby has come back in full force wanting to look at and study everything and everyone just like before. She was super talkative with so much to say. It's so wonderful listening to her laugh, snort, talk, blow bubbles...  My heart is so overjoyed! It's a challenge trying to keep my baby from rolling on her belly when just a month ago I was thrilled and praising her when she did it for the first time and since then, it's been the norm for her. With the new environment and having had her eyes closed for so long, she faught taking a nap(s) all day. That's okay though because it's made for a very quiet, sleepful night for both baby and mommy.