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.