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.  

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