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.  

Turning the corner

It was a great day! 

Tylenol, Motrin and Lasix (water pill); this is what has kept my daughter comfortable and allowed the healing process to progress. I also learned a trick; when giving babies liquid medicine, if you blow in their face it makes them swallow. Definitely a less stressful way to make sure she gets the medicine she needs.

Throughout the day, Felicity's swelling finally started to go down. In doing so, lil pieces of her beautiful personality finally started to shine through.

I've been pumping and feeding her by the bottle because it's been easier for her, not having to do most of the work. I did breast feed her on Tuesday (the rough day), but only for a short time. A Mom just knows their child and I knew my baby needed more rest, healing and bottle feeding vs the breast. I didn't want to put that pressure on her or me, knowing once she felt more like herself that we'd pick up where we left off. Well, that's just what happened! Once her swelling started to go down, we were one again; after all this time, we both needed it. Almost immediately, the spark came back for both of us. There's a dependency with breast feeding, not just on her part but mine too. Although I knew it before, I guess I never realized the depth of it until now. 

Following the decrease in swelling, her right eye finally opened. Just a tiny bit but enough to let her see what was going on. It was so wonderful! After changing her diaper, I was talking to her and then there she was looking at me. I said to her "good morning sunshine, my beautiful baby girl Felicity" and then I got a smile and happy squeal laugh. It was then I finally felt like I could exhale! Then she got to see her Grammee and there were more smiles and laughs. Her lil beautiful amazing personality was in full force; you could just feel all the worry leave the room, replaced by joy. She was immediately raring to go and even spent a few minutes in an exersaucer which was great for stretching her legs and moving around a bit after laying in a bed or my arms for so many days.

Prior to her surgery, I had read from other Cranio Moms how resilient babies are and how quickly they bounce back. I had hoped that would be the same for Felicty and thank GOD it has been. From day one in the womb, I have always said I am in complete awe of her; I have an admiration for my precious daughter that I just can't put into words. I am eternally blessed and grateful to be Felicity Grace's Mommy!

Fears and tears

Felicity was doing so well yesterday morning and then after changing floors/rooms it all changed. They say the 2nd and 3rd day are when the swelling happens and the pain is at its worst. I thought I was prepared for her surgery and recovery. As it turns out, I was prepared for the physical changes but there's no way I could've been prepared to watch my 4-1/2 month old baby girl be in pain or even the slightest bit of discomfort. 

Just as we were changing rooms I overheard her last PICU nurse tell the new nurse that she heard a murmur. This was the first I had heard of this so I obviously became concerned and immediately asked the new nurse to check it. She didn't hear anything but I have requested that they continue to check her for it. Well, it's back. I'm told this is completely normal sometimes after surgery and her numbers are good. So we just moniter her. <fears and tears>

She began to swell and her eyes are now completely shut. This is completely expected and normal after the surgery she had. Once her eyes became swollen shut you could tell it caused confusion and agitation. <fears and tears>

During one of her vital checks, they found she was running a fever (38.6c which is 101.4f); I broke down out of fear. I don't want her to develope an infection. She has orders for 3 options of meds right now; Tylenol, a pain med that has a little bit of Tylenol and Motrin. The Tylenol can help the fever but may not be enough to help the pain like the other one can. The pain med though it has Tylenol might not bring the fever down and can't be taken with the Tylenol. The Motrin isn't supposed to be taken by children younger than 6 months but would mask her fever (her words) and can be taken with the pain med. The nurse recommend the Motrin. I know she's the size of a 6 month old, but she is still only 4-1/2 months old. I inquired as to why they don't want a child under 6 months to not take Motrin and the nurse didn't know, she ended up researching it and consulting with the Pediatrician (not hers but the one on duty) and the Pharmasist. I want her in no pain and with no fever, but I don't want to give her something that she's really not supposed to take and her Pediatrician had previously mentioned she can only have Tylenol. I want to help her immediately but also make sure she'll be okay in the long wrong. The nurse told me to think about it and returned an hour later. She took her temperature and it was normal. <fears and tears>

During a feeding she was given the liquid pain med. It's known to make babies gag because even though it's flavored, it still tastes bad. Well, it didn't just make her gag; she threw up. It's one thing for your baby to spit up but it's entirely different when they are throwing up. <fears and tears>

It was time for her vitals again and the nurses assistant took her temperature but instead of taking it at her arpit, she took it across her forehead. I about came out of my skin. My daughter just had her brow bone reconstructed and her forehead moved over. She's sensitive in that area right now so pressing a thermometer against her forehead and sliding it across is unexceptable to me. <fears and tears>

I wish we were back in the PICU is what I told my Mom... I just feel like the nurses were really there to take care of my baby and they were wonderful. On this floor, I feel like I'm imposing on the nurses and sort of left out to dry. They haven't been rotating my daughter from side to side every two hours to help  eliminate swelling and they've treated her like she's some extra person on the floor that they really don't want to or have to tend to. And then in walks her evening nurse, Dionne. The moment she introduced herself, I just knew she was one of the good ones. I broke down and told her about each hurdle Felicity has faced, our experience both in the awesome PICU with the amazing nurses, our experience on this floor and my concerns.

Yesterday was such a rough, trying, scary, emotional day with helplessness, fear and so many tears.

It's a new day today... Dionne was amazing and really took care of my precious through the night. This morning her temperature and vital signs are normal, her swelling has gone down a bit but her eyes are still swollen shut. She had a moment of choking and then spit up but that could be from laying all night and everything settling. Dr. Moss and Lindsey just stopped in to check on her. He's ordered her the water pill medicine to help bring down the swelling. He also encouraged the Motrin. Turns out he is the one that wrote the orders for it, not the on call doctor like yesterday's nurse had implied. So now I feel awful that I didn't give it to her yesterday but I didn't know and didn't want her to take something that normally isn't for a baby her age, ordered by someone that isn't her personal doctor. So we'll be alternating between Tylenol and Motrin. So far her new nurse has been great though I do miss Dionne. I'm hoping today we turn the corner.

Just shy of 24hrs post op

It hasn't even been 24 hours since her surgery and Felicity is doing awesome!!! 

Thankfully I swaddled her when she was first born so she finds comfort in it, which is how she's being comforted now. In doing so, we've been able to use pain meds as a back up vs as a dependent. She actually went from midnight to 8am without any pain medication and had no discomfort during that time. 

All of her vitals, urine and color have been normal and her temperament fantastic. Even with being tended to every two hours, she has only whimpered and/or showed discomfort a few times and was immediately comforted and taken care of. She's my precious sleeping beauty, healing wonderfully!

At midnight they took her catheter out. At 7am Dr. Moss and Lindsey came by and said she looks great and said because she doesn't have the typical increased swelling, they don't have to give her the medication to help remove the extra fluid to help reduce the swelling. He also gave me the hair he shaved to do the incision, her first haircut (he even put a Tinkerbell sticker on the little baggy). At 8am they removed her IV lines. Also at 8am the doctor on shift came by and said she looked great; he was impressed by her size saying she looked like a 6 month old lol. He also said she's doing so well that she can move out of the Intensive Care Unit and now they'll monitor her every 4 hours vs every 2 hours like they have been. 

I got to hold her and they were actually surprised nobody had told me I could sooner. As much as I want to wrap her up in my arms and not let her go, at this time she really needs to be swaddled and in her crib where she can have as little movement as possible to sleep and heal. 

7th floor Penthouse baby!!! And, Mommies favorite number 13 is where we have moved. They almost had to keep us in the PICU room because everything seemed full. This is actually the cancer and blood disorder floor, so they said for us it means it's the most sterile which is great since Felicity is only 4-1/2 months old and hasn't had all of her immunizations yet. They are monitoring her oxygen level because it was surgery on the head and with the swelling they want to make sure her airways don't get blocked.

About an hour after getting to see her for the first time after surgery, I gave her a bottle of Pedialyte and since then she's been on a regular schedule with breastmilk. I'm still only feeding her by the bottle just until I feel she won't be in an any pain when she's laying in my arms in the position to feed from the breast. The nurse is going to call Dr. Moss to make sure he's okay with it and once I'm given the okay I'll breastfeed her...  I know it will help her and me.

It's surgery time

My precious baby girl was all smiles and in great spirits this morning, just as she is every morning. Even with her last feeding at 3am and obviously beyond hungry by 9am. Each member of her surgery team individually came in to say hi; Dr. Moss, Dr. Joganic, Dr. Parks, Lindsey and Kristen. At 9am the nurse (Kristen) came in and after hugs, kisses and loving from her Grammee and then Mommy, she was taken into surgery.

I had imagined that after handing her off, I'd just fall to pieces. But I didn't. Don't get me wrong, I cried, panicked and sort of went into a dazed fog. I made it through by telling myself the following: She's healthy and strong, she needs this surgery, her surgeons and their team specialize in this and have the skill and knowledge and she has so many people praying for her.

At 9:06am I handed Felicity to the nurse. At 10:07am I got the call that they had administered the anesthesia, she took to it great and they inserted the IV lines without having to use the central and they were starting the surgery. At 11:11am I got the call that the surgery was going good and all of her vital signs were great. At 11:36am I got the call that the surgery was done, everything went great and they were closing her up. Both Dr. Moss and Dr. Joganic came out to tell me in person that everything went great. On the way to the PICU to see her, Dr. Parks her Anesthesiologist was just leaving her room and said she did wonderful and the shape of her head looked great. 

Now we are on the healing part of her journey

The day before surgery

I cry writing this...  I'm mixed with so many emotions. I'm so scared and feel so truly helpless but I'm glad to be one day closer to having this behind us. I'm afraid of what I don't know and of what I do know. The thought of her feeling any pain just crushes me. I so want it to be a week after her surgery, home with my beautiful precious baby girl. Instead, I'm packing to head up to Mesa today.

I can't explain in words how this feels. The anticipation of having to hand over my baby to be operated on. I've tried to prepare myself as much as I can. I've reached out to other parents of Cranio children to get support. I've read their stories and looked at their pics to get an idea of what to expect after her surgery and during the healing process. I still feel unprepared.

My Mom has been amazing!!! She's been right by my side. She's let there be silence when I haven't been strong enough to talk about it. She's been there when I've cried and needed to release the built up pressure. Felicity is her Granddaughter and she's feeling her own fears and having to watch her own Daughter go through this frightening time but has always validated my fears as a Mother and said "I can't imagine what you must be going through"...  that really means a lot to me. I can't explain why but it does. My Dad has been amazing as well!!!  He has been supporting my Mom and myself and loves his little Granddaughter.

We are blessed with an amazing collection of family and friends that have been praying, calling, sending text messages and emailing to check up on us throughout this journey. I can't find the words to express my gratitude.

Something all three of her doctors have said at least once along this journey is "its the bone not the brain". That is something that is so important to remember! She has no delays in growth or side effects. I'm so grateful she was diagnosed early and is getting surgery right away.

I decided to create this blog to tell Felicity's Cranio Journey in my own words. Let me be very clear here, she does have Craniosynostosis however it does NOT define her! She will always know what she had and know about her surgery, but this will thankfully not be something she has to live with or address on a daily basis. 

I also want to share her journey to bring awareness. I've had a few people say to me "I've never heard of it before" as to which I reply "well, neither had I until she was diagnosed". Since being diagnosed, I know of two other children that have had the same condition and surgery (one is a friend of a friend and one is a relative of my Dad's friend). It's not that uncommon, it's just not that talked about. I mentioned to her doctor that I thought it was odd more people don't talk about it and he said it was because once it's found it gets fixed and life goes on. I like that!

Pre-op bloodwork

May 2nd and three generations back up to Mesa for some pre-op blood work. Three awesome ladies took her blood; they wrapped her up and held her body down, one held her arm down and the other drew her blood. Poor lil girl cried tears and ended up with a bruise because she rolled her arm. However, as soon as it was over the tears dried and she smiled right away. She's so amazing! They even gave her a super cute purple outfit with a headband, ironically purple is the color for Craniosynostosis and they didn't know.

The plan for the surgery

Surgery for Unilateral Coronal Craniosynostosis of the right side is scheduled for Monday,  May 5th at 9am

The plan of attack for surgery is to cut her from ear to ear; a straight line, not the zig zag cut that you may see elsewhere. Though it is just her right side, they will treat it like it's both sides to get the best results and because her left side is having to compensate as her brain is growing and her skull is not able to expand on the right side.They will open the fused suture, reconstruct her brow bone, shift her forehead over to the right and for about a half hour, Dr. Moss will hold her brain in his hands and slowly move it over to the right. They'll close the incision with staples that will be removed at her post-op appointment on May 20th.

She will most likely need a blood transfusion. We are the same blood type and I could ask to use mine. However, that would've required me to donate, then they test the blood and in the end it might not be a match because there's more to it then just being A Negative. Plus, we have enough going on emotionally and with doctor appointments that Dr. Moss recommended against it. He also said I might be really disappointed to go through all that and then find out my blood can't be used. I made the choice not to because I believe he's correct.

Dr. Moss will be giving Felicity her very first haircut. He will only shave the area he's cutting and he'll be saving the hair for Mommy. 

Her surgery should take about 3 hours and she'll be in the hospital for 5 days minimum. They usually only keep the babies 3 days but because we're from Tucson, they want to keep her longer to make sure she's okay and I'm okay taking care of the incision.

I will need to make sure to keep her incision out of the sun for about a year so headbands and hats it will be. Dr. Moss will follow Felicity every year until she goes to school, just to make sure all is good. There is a possibility of a second surgery; sometimes when the bone grows there is a little gap/hole and they'd do a less invasive surgery to fill it.

She does not require a helmet following surgery.

CT Scan, Pediatric Neurosurgeon and Craniofacial Surgeon

It's April 17th; a year ago today I found out I was pregnant. Just thinking of that day makes me cry happy tears, so overwhelmed with happiness and love.Today we (my Mom, Felicity and I) drove to Mesa for a long day of appointments.

First up was Felicity's CT Scan. She did amazing!!!  They laid her down on her back, wrapped her up snug like a lil pig in a blanket and strapped her head down. They gave me a protective jacket to wear and let me stay with her, holding her chin and talking to her. She cried but once they let her out of the wrap she was all smiles. There's something to be said about a Children's Hospital and the amazing nurses and doctors. I had read others stories about how their children had to be sedated to do the CT Scan and I was worried but reassured by Dr. Moss that they use every method not to while still making sure the child isn't too uncomfortable.

Once the CT Scan CD was ready, we headed over to Dr. Moss' office. He went over the results which confirmed she has Unilateral (one sided) Coronal Craniosynostosis on the right side and her soft spot is completely closed. First and foremost, her brain looks great!  And, her Craniosynostosis is NOT affiliated with a syndrome. Two huge bonuses!!! We discussed the surgery procedure and once again I broke down but still feel confident in the team. I am also very impressed and relieved that Dr. Moss is very particular about who he uses for anesthesia, there's only about 10 Anesthesiologists he uses out of everyone. 

Our final appointment of the day is meeting with Dr. Joganic the Craniofacial Surgeon. He and Dr. Moss have performed many many surgeries together in over 20 years. He and his staff were great and made me feel comfortable and confident in them. They took pictures of Felicity and said they were impressed by how well she did. Haha, I've taken so many pics of her she loves cameras.

It was a long day and my precious did awesome!!! Thankfully she rides great in the car, especially since it's a 2 hour commute each way.

Holding it together

Inside I am scared to death and feel completely helpless. I have my miracle baby girl and the thought of her having to have surgery at all, let alone at 4 months old terrifies me. However, the best thing I can do is to keep it together for her. To be strong for her. To be in the moment and enjoy our time together. The surgery is going to happen but it doesn't have to interfere with our time now.

She has no care in the world and no idea of what is to come and for that I am grateful. If this had to happen, I am so thankful it's when she is too young to remember it one day (I hope). 

When she was first diagnosed with Craniosynostosis, I  thought why my baby. I asked that once and never again. There really is no answer why and dwelling on it won't change it. I do know that if there has to be anything, I am grateful it is "just" this. Something that surgery can correct and I thank GOD we have a Pediatrician, Neurosurgeon and Craniofacial Surgeon that have expertise in the subject. 

Once you've spent time in a Pediatric Neurosurgeon's waiting room or a Children's Hospital for that matter, you definitely realize your priorities and acknowledge your blessings if you hadn't already done so before.

 

My baby has a Neurosurgeon

On March 4th my Mom, my baby and myself all drove to Mesa to to meet my daughters Neurosurgeon, Dr. David Moss. Prior  to our appointment, I had spoken with Joyce, Dr. Moss' head nurse. She was amazing over the phone; introducing herself, telling me about Dr. Moss, talking to me about what I must be feeling and thinking. I immediately knew we were in the right hands.

Dr. Moss was in between emergency surgery's when we had our appointment but still took the time to go over her x-rays in detail, even drawing pictures on a paper to help explain and describe everything. He is very matter of fact as he should be but also very comforting. He says he will treat Felicity like she is one of his own Grandchildren.

He reassured me that this was NOTHING that I did or didn't do. He talked with me about everything I had previously read on the internet and addressed all my concerns. I of course broke down the moment we started talking and thankfully my Mom was holding Felicity so she wouldn't sense anything.

They want us to return for a CT Scan, meeting with Dr. Moss again and also meet with Dr. Joganic the Craniofacial Surgeon.

During our drive back I said to my Mom "I have confidence and feel comfortable with Dr. Moss and his team". I felt like a weight was lifted after meeting with him. Prior to our appointment, I would break down in tears and just loose it when Felicity was sleeping. After our appointment, I stopped.

X-Rays and Results

On February 20th Felicity had x-rays of her head done. We went to the TMC Imaging Center in Rita Ranch and it just so happened that I knew the technician which helped ease me. It's not easy laying a 2 month old on their back and keeping them still without them having the proper equipment but he improvised, being gentle and caring the entire time. If it had to be done, I'm so glad it was there and with him.

On February 21st., I was at my parents house and Dr. Vondrak called. I took the call out back while my daughter was inside playing in her swing and my Mom, Dad and Mom's Cousins Jake and Kay were also inside. I remember I sort of froze when the phone rang. I already knew with everything in me that she had Craniosynostosis, but now someone confirming it will make it real. And by making it real, her having surgery will be real. My baby, my precious little 2 month old miracle. 

Dr. Vondrak confirmed the x-rays showed a closed suture, possibly two. He said he had already put a call into the office of Dr. Moss a Pediatric Neurosurgeon in Mesa. Dr. Vondrak was very matter of fact and comforting. He took the time to talk with me and repeated multiple times, she will be okay and most important, this is nothing I did or could have prevented. I remember my Mom coming outside, me telling her and then I sort of collapsed. I felt so scared and helpless and to this day, I still feel scared and helpless. I am her Mommy and completely unable to protect her from this.

Understanding Craniosynostosis

The normal skull consists of several plates of bone that are separated by sutures. The sutures (fibrous joints) are found between the bony plates in the head. The function of the suture is to allow molding through the birth canal and adjustments for the growing brain.  As the infant grows and develops, the sutures close, forming a solid piece of bone, called the skull.

What is Craniosynostosis?

Craniosynostosis (kray-nee-o-sin-os-TOE-sis) is a birth defect in which one or more of the joints between the bones of an infant's skull closes prematurely, before your baby's brain is fully formed.

As an infant's brain grows, open sutures allow the skull to expand and develop a relatively normal head shape. If one or more of the sutures has closed early, it causes the skull to expand in the direction of the open sutures. This can result in an abnormal head shape. In severe cases, this condition can also cause increased pressure on the growing brain.

Types of Craniosynostosis:

In sagittal synostosis (scaphocephaly), the sagittal suture is closed. As a result, the infant's head does not expand in width but grows long and narrow to accommodate the growing brain. The sagittal suture is the most common single suture involved in Craniosynostosis.

When the metopic suture is closed, this condition is called metopic synostosis. You may also hear the term trigonocephaly used to describe your child's head shape. The deformity can vary from mild to severe. There is usually a ridge down the forehead that can be seen or felt and the eyebrows may appear "pinched" on either side. The eyes may also appear close together.

The coronal suture goes from ear to ear on the top of the head. Early closure of one side, unilateral coronal synostosis (plagiocephaly) results in the forehead and orbital rim (eyebrow) having a flattened appearance on that side. This gives a "winking" effect. These features may also be more apparent when looking at the child in the mirror.

Both sides are fused in bicoronal synostosis (brachycephaly). In these cases, the child may have a very flat, recessed forehead. This suture fusion is most often found in Crouzon and Apert Syndromes.

How is Craniosynostosis diagnosed?

There are several clues that may cause a parent or doctor to suspect that a child has Craniosynostosis. A misshapen head is usually the first clue. The anterior fontanelle, or soft spot, may or may not be open. The suspected diagnosis is confirmed by x-rays. A CT scan is also done to make sure there are no underlying abnormalities in the brain.

Treatment:

For most babies, surgery is the primary treatment for Craniosynostosis. The type and timing of surgery depend on the type of Craniosynostosis and whether there's an underlying syndrome that needs treatment.

The purpose of surgery is to relieve pressure on the brain, create room for the brain to grow normally and improve your child's appearance. A team that includes a specialist in brain surgery (Neurosurgeon) and a specialist in surgery of the head and face (Craniofacial Surgeon) performs the procedure.

It's very important to find doctors (Pediatrician, Pediatric Neurosurgeon and Pediatric Craniofacial Surgeon) that you feel comfortable with and have confidence in.

There's a lot of information on the internet, some correct and some false (it can be overwhelming and frightening). There are also support groups available where you can get information and support from other families that have gone or are going through the same journey. Just remember every child and situation is different and it's your team of doctors that you should rely on to answer all your questions.

Newborns with this medical condition are usually kept under the wraps but by educating parents on Craniosynostosis, more infants will have a chance to live a normal life. Remember, you are your babies only advocate!!!

A Mother's Instincts

When Felicity was born, her right eye looked rounder than her left eye which in turn made the left eye look a little smaller. I took note but didn't think anything of it because there's a lot of swelling that has to go down days after birth and babies change almost daily, coming into their own. I also know what my eyes look like after a sleepless night or a good cry. 

At about 6 weeks old, her eyes were the same and now I noticed a little dent in her forehead above her right eye. So, I googled randomness such as "dent in babies forehead on one side" and that's the first time I saw the word Craniosynostosis. I read all about the condition and looked at pictures. There was one picture of a baby that looked just like Felicity with her facial features and that's when I noticed that babies left ear also had a little droop to it like my daughters left ear has. I immediately knew my daughter had this condition. It was during the research that I found out that Coronal Craniosynostosis also affects the ear on the opposite side of the face. It's strictly cosmetic and let me just say, I have always and still do love her little unique ear. 

(Backstory: My OB recommended a Pediatrician so I was going to go with him. Before even meeting him, he went out of the country for 3 weeks and had Dr. Vondrak filling in for him. I immediately felt comfortable and trusting and asked that Dr. Vondrak remain her Pediatrician.)

After gathering the information I had found on the internet, I met with Dr. Vondrak. He praised me on my Mothering skills and instincts and agreed that my concerns were valid. He ordered x-rays to be done as the first step and said a CT Scan would follow if there was any indication. He also told me about who he'd refer me to if she did in fact have Craniosynostosis. I am so beyond grateful that he is her Pediatrician! Thankfully he has seen Craniosynostosis before so he was able to talk with me about what I read and the next steps that would be taken. He also encouraged me to NOT google but to instead trust in her doctors and to address my concerns and answer my questions.

 

My Precious Miracle Baby Girl

I was told I couldn't have children and almost had a hysterectomy years ago but I didn't because I said "I won't be the one to make the final decision". However; against all odds, on April 17, 2013 Dr. Smith told me I was pregnant. I immediately burst into tears with excitement, disbelief, fear and confusion. My first thought was I love this little baby so much and will do absolutely everything in my power to keep her or him safe.

Days later I had my first appointment with Dr. Hoskins and saw my baby's heartbeat for the very first time. I was diagnosed as high risk due to a previous pregnancy that ended in a miscarriage, the severity of my fibroid tumors and my age. I kept my pregnancy private for the first 4 months until we were in the safe zone. I had a wonderful pregnancy with a very active baby day and night with her rolls, kicks, tugs and hiccups. At 30 weeks, during an ultrasound she measured a week older and was already practicing breathing and sucking, impressing the technician who called her an over achiever.

 

On my due date, December 16, 2013 they decided with me being high risk, they didn't want me to go past my due date so I was induced and preparing for a vaginal delivery. At 8 centimeters, with the baby's head in the birth canal and attempting to push, my heart rate went up during a contraction and would not come down, I was developing a fever and the baby had had a bowel movement. For the safety of my baby and myself, they had to do an emergency c-section. During the delivery, they found that the umbilical cord had a knot in it, which is rare but they said the cord was so thick that the knot didn't compromise her ability to get all of her nutrients. That was apparent when she weighed in at 9lbs .08oz and 20-1/2".

Felicity's Apgar Score was an 8 at minute one and 9 at minute five. She had to have her glucose levels checked a few times because of her weight and passed each time, no diabetes. She passed her hearing test on both ears with flying colors. And, she latched on immediately for breast feeding. Felicity was born with what they call, a storks bite on her forehead and back of her head. This has no affiliation to Craniosynostosis but I wanted to include it because so many have never seen or heard of it.

I am in complete awe of how amazing my daughter is. She defeats all odds and obstacles with her strength and determination. I am so blessed and proud to be Felicity Grace's Mommy!