Lazy days

 Saturday we slept way in, about 12 hours total..it's safe to say we were all exhausted. Jon and I ordered in some Indian food that was delicious! Jaylia enjoyed a burger and mcflurry! 

Sunday we had a bit more energy, and went for a few walks around the neighborhood. Jaylia's swelling decreased a lot! 

We had to get some Dunkin donuts, though they weren't as good as I remember. 

Jon and I liked the Indian food so much, we went to the restaurant and had their buffet for dinner. Jaylia didn't want Indian food, so she played on her tablet while we ate and we grabbed her another burger and mcflurry on the way home. 

Monday (today) we planned to go to the Ben Franklin Institute and see the Harry Potter exhibit, but Jaylia woke up not feeling 100% so we stayed home. We may try to go tomorrow. She slept a bit and woke up feeling better. 

As you can see her swelling is way better! Her incision looks good and we have a follow up with her surgeon on Wednesday before we fly home. 

It all feels so unreal. It took about a year from finding the craniosynostosis to surgery, and I'm still in disbelief that it all happened. I look back at photos and study her skull to see if I can pinpoint when it started, or if it was ever asymmetrical, but nothing jumps out. I thank God for guiding us to finding it and for protecting her. Jay is processing it all too, we were talking last night about the surgery and how he did it and why it was important. She seems to understand, and now that we are through it, it doesn't freak her out. 

In less deep news- Jay is getting pretty good at yo-yo-ing!

A very good day

We found out that M-F the Child Life team puts on a Bingo game on the TV channel in the hospital at 2pm. So we got her Bingo cards, and played two rounds! Jaylia won three prizes just before it was time to leave for her CT scan. She doesn't mind imaging, so hopped right up and talked to herself/sang the whole time. 

We then got to go to the Ryan Seacrest Studio in the hospital. She picked out three fun prizes, a fidget, a yo-yo, and some squishy things. 

We got back to the room, and she ate her pizza lunch. Then the doctor on the floor came in, showed us her CT, and said the plastics team was pleased and we could be discharged! 

So we packed up and got her meds from the pharmacy (just Tylenol and an otc antibiotic ointment!), ate dinner, showered Jay, the nurse took out her IVs, and out we went! 

Good news, her friend C was able to discharge today too! 🙌

We Lyfted back to the hotel. Walking back into the room with my girl, we had left with just 5days earlier made me very emotional. She went through a life changing event and we were just back to the hotel a "short" 5 days later. Jon and I are both amazed, thankful, worried, overwhelmed, exhausted, and loved!  We love our sweet girl so very much! Your love for her and us and your messages and support has helped sustain us so much during this journey! 

I will write more about the specifics of the surgery later or if you have questions feel free to message me, but for now, here is a screenshot of one of her CT images. It's safe to say I'm feeling very helicopter mom over her for the next few weeks especially, and even months while the new bone grows, heals, and hardens.

But for tonight, I am thankful to sleep in a normal bed, and wake up when we want, and not have vital checks every 4 hours! 

We are looking forward to a bit more sightseeing before we fly home on Wednesday. I'll make sure to share what we do!! 

TGIF

 Thursday we went down to the cafeteria and got her a fresh strawberry, banana, and pineapple smoothie. That seemed to remind her she liked food and then things got progressively better. She has pizza for lunch and dinner.  

After dinner, we got a call from Uncle Mark from Montana. He and cousin Choral are on a road trip out this way, and they had just come into Philly.  They were able to come into the lobby at CHOP and we were able to come down and visit! So nice to see family so far from home! They brought Jaylia the cute sloth seen in this picture! He's been hanging out with her! 

As Jay's energy returned so did her fight 😂 which is great but exhausting in it's own way. Even vital checks she'd kick and refuse to cooperate. 

Even the pulse oximeter was deemed painful and weird and impossible to sleep with. 

We got through her check at 10pm and then she watched a movie.  She was pretty weepy as the night went on and I snuggled with her all night. She slept through her night time vitals, and we skipped her 2am Tylenol dose and waited to give her 6am till about 7:30. She's not complaining of pain so we opted for sleep rather than Tylenol. 

When she woke up Friday morning, we made a plan to wash her incision and apply the ointment, then go to the cafeteria for another smoothie. She absolutely hates wound care time, so a plan for afterwards is necessary. 

Today we went with her friend , C. C had the same surgery plus some the morning of Jaylia's surgery. It's been so encouraging to connect with another cranio family in person.  I'm incredibly thankful for her and everyone in the cranio world I've met that has helped us navigate this.  Please keep C in your prayers for healing too, it's been a rough couple of days for them. 

After smoothie time, it was drain removal time.  Because she has been so oppositional to any proding, we made the decision to give her a bit of oxy prior.  Child Life came in and helped explain the why of what we were doing next and helped distract during the procedure. Jay refused initially, but ended up leaning her head on my arm while I held her hair out of the way as they snipped the stitch holding it in and pulled it out. It went quick, and she fussed a bit, but overall went WAY better than it would have without the oxy to chill her out a bit. Fun fact, oxy gives her nausea too. But I'll take the exchange. 

Next is a CT scan, and IV removal. Depending on how quickly those things are accomplished we'll be discharged either tonight or tomorrow. 

Everyone here has been amazing, our nurse this morning advocated for us to have more time for Jay to adjust and get comfortable before attempting the removal. Dr. Taylor is so kind and I can't thank him enough for taking Jaylia's case seriously and checking her pressure and making sure she had the gold standard of care.  I am beyond thankful for the continued confirmation we made the right calls in looking elsewhere for care and coming here. 

Craniosynostosis is impactful to older kids, don't let anyone ever tell you it isn't. 

"You should see the other guy"

 The swelling has hit and boy did it ever! It is totally normal and should start to go down from here the doctors said during rounds this morning. From this angle the incision site isn't visible, but it looks good so far, and is healing nicely.

Jay had a good nap yesterday and woke up asking for her bacon, so appetite is slowly returning. 

She's slowly warming to the idea of hairbands. I ordered a few another cranio mom suggested from amazon to get us started. They'll be delivered to an Amazon box near the hospital tomorrow. I'm hoping it'll help her feel more confident. 

Her tablet for some reason won't load Disney+, but they have iPads in the hospital that the kids can borrow, I was able to log in on there and she is happily watching bluey now. 

We'll be able to get some walking in today which will help the swelling situation. Working on figuring out what she'd like for breakfast now. Daddy has been able to sleep at the hotel the last two nights, and I've gotten a bit more sleep than at first too. The surgical floor is great, way quieter and there is a couch that folds into a twin size sleeping surface. I slept solidly from 11am-3pm yesterday, totally missed seeing the cutest little therapy dog. But he did cheer up Jay a little. 

Tears

 We both slept for about an hour until the doctors came in and told us they were taking off her bandage. Totally not a great wake-up 😬. 

Jaylia rolled over onto her elbows and knees and did not engage with them at all. They clipped the bandage off from the neck up. Once it was off she sat up and felt her head.  

The shaved strip is wider than either of us expected. She immediately got upset and started crying and whimpering. The doctors said she looked great and left. 

This room I can crawl in bed with her so I did and just held her. Eventually Dr. Taylor came in, he was very encouraging.  He said she could take a shower and take out the braids if she wanted to. He's thinking we'll for sure be able to use our original flight tickets home. 

Her incision does look really good. But she's been in tears a few times this morning. She said she is  worried her sisters and friends will laugh at her, even without her knowing. 

If you want to see a picture please let me know, I'm not posting anything yet because she's so sensitive about it, and I want to be respectful of her. 

Floor transfer

Jaylia had a better afternoon/evening yesterday (Tuesday the 8th). 

Her motivation to engage with us was pretty low. Child life brought her a soft warm blanket and a squishmallow and those things cheered her a little.  

By afternoon, she started perking up and talking a bit more and then her pain snuck up again and she started having apnea episodes while asleep. We consulted with the Dr on shift and since her neuro checks were fine and she'd just been better than Monday night, we decided it was probably the pain causing her to hold her breath while asleep. So Dr ordered a slow dose of morphine over the next 8 minutes. This did the trick and Jay slept peacefully and kept breathing for the next couple of hours.  

When she next woke up she was much more energetic and asked to eat her Mandarin oranges, on her own!  She played tablet and was okay with doing a video call to her sisters. She also has gone over 6hrs without vomiting or retching, praise God!  That was getting really hard on everyone! 

After one of her naps she woke up and felt her head. Then said "oh that WAS a dream." She dreamed they took the bandage off and she was home 🥺 it was a good opportunity to remind her that goal is what we are working towards. 

About midnight, she was woken up by her neuro check and I asked her if she wanted to go potty. She first said no, but after some thought, "oh I might as well" and starts unplugging herself 😂 she's gotten quite good at knowing what plugs into where and not only unplugs herself but plus herself back in! 

We knew since she was doing so much better we'd be transferring to the surgical floor probably sometime overnight and sure enough got word about 4am it would be time to move in about 30 minutes. 

So now we are settled on 4th floor south, in a beautifully quiet single room 🙌 thank you Jesus! Jay is not so sure about the change in surroundings and shut down some, refusing to speak to the new nurse, but I've heard this is the fun floor where the kids work on getting some normal back so hopefully she'll get comfortable quickly.  

Jon went back to our hotel for the night, he'll be back on the morning shuttle.  

This picture is from earlier in the day, but I knew she was feeling a bit better when she started controlling her own tablet. She also played Pokemon go quite a bit tonight too. 

 

She started asking about her hair and the shaving, and I told her a little bit is shaved and showed her where it would be on me. She started to get upset and I told her, when she has a ponytail it won't be super visible and once her hair grows back she won't even notice it. Then I asked her if she remembered a friend of her's Mom.  She said yes. And I said, "She's a cranio-warrior too like you, she has a scar like that." And Jay got real big eyed and said, I've never seen it! I said yep, cuz the hair covers it! And that comforted her 💜 the scar and the hair has been a big part of her anxiety over all of this. It was the last thing she asked me about before they put her to sleep in the OR. I'm hoping seeing the bandage come off won't be too hard on her, but knowing it's another step closer to coming home should help. 

PICU #3

 Jay is making some improvements, but we are still trying to get a handle on the nausea. She was able to get out of bed and go to the bathroom and that was something she'd been wanting to do since yesterday.  Also, she would like to put her own clothes on but that will need to wait for a bit. 

We are trying to engage her a bit more, Child Life brought some items by, she interacted with one a bit and is off to sleep again. 

We are trying some pepcid to see if that will calm her stomach down. 

PICU #2

 Jaylia is showing her feisty-ness in spite of being pretty sleepy and out of it. About 4 hours ago A Dr from the neuro team  came in (before sick baby moved in) to check on her and he was asking her to wake up and wiggle her toes and she hit him with her arm 😂😂he's like well that arm works 😂

And then just a bit ago we were chatting about her now on her head bandage and she woke up suddenly and yelled, "NO BOW!!" and moved her arms to try to grab at it. Then promptly fell back asleep. I adore her 💓🥰

I'll try to get one of her eyes open tomorrow.  She does open them for her neuro checks and responds when they ask her to. 

PICU #1

 We are with Jaylia now. She is sleeping mostly. She's got a bandage on her head, it has a little bow on top, she sort of looks like a Who. The bandage will stay on till Wednesday I think he said. She just woke up briefly and had some nausea from the anesthesia.  In a few hours she'll probably be awake enough to want to eat something.  

OR update #4

 We just saw Dr. Taylor, Jaylia will be moved to recovery and her ICU room soon. He said she did really well. ICP was actually 16-18, ranging higher than we initially were informed. She definitely needed the extra room. She'll have a head wrap for a few days, and a drain. 

They were able to obtain our blood we had donated just in time, so she was able to use that for her transfusion. God is so good. 

We'll be heading to the ICU in a bit. We should be there a few days.  

OR update #3

 Just talked to the nurse, Dr. Taylor is closing now. He should be out to speak with us in a half hour or so. Then once she is headed to ICU they'll let us know and we'll meet her there

OR update #2

 Just spoke to the neurosurgeon, he said the thumbprinting inside her skull was so dramatic it surprised them the pressure wasn't higher. Dr. Taylor (the plastic surgeon) took a picture of it.

 He also said we did the right thing. 

OR update #1

 Jaylia does have significant icp. 16mmHg. The range to qualify her for conventional cranial vault remodeling (CVR) was 15-25.  

They are currently prepping her for the CVR procedure. It's a long one, 5-6 hours probably. 

Pre-op

Jaylia was in good spirits heading to the hospital. 

She was very brave and walked right in. As I expected the rubber hit the road when she was asked to change clothes. Child life came in and calmed her down a bit with a coloring page but it still took about another hour+ to get her into a gown. 

After we got her into the gown she was able to have the "giggle juice" pre-med, versed, which is just to calm her nerves and often has an amnesiac affect so hopefully she won't remember what happened next. 

She did not want her picture taken, but I snuck this one. She was very sad, but very brave. The last thing she asked me in the OR was to not shave her head. I told her some of her hair might be shaved but she would have most of it when she woke up. 😭 She fought the mask a bit which is normal.  She did go to sleep pretty quickly. Then I kissed her and prayed quickly. Then went in the hallway and cried. 

We are in the waiting room now. 

Tourist Weekend

We decided to have a fun weekend! Our lovely hotel has a great continental breakfast and Jaylia got to have as much bacon as she wanted! 

Our first stop was the Philadelphia Zoo, America's first zoo.

This was all that we saw of birds because there is an avian flu going around. No birds were on display.

Cool original home of William Penn's grandson. It was the first of the neo classical design in America and is almost a perfect cube.

No kangaroos on display either. We did see a rhino tho! 

Then we headed to the historical district and saw the outside of Independence Hall and the Liberty Bell. Incredible to see and read more about. 

Then we went to Reading Terminal Market. Jaylia had a really yummy ice cream and Jon and I split an alligator sausage po'boy. It was quite tasty!

Sunday we were all tired so we got a late start. Headed out about 2PM to Betsy Ross's house. I've always loved her story, but seeing her home (that she only rented! she never owned a home) was incredible. We were able to be in the room where she met with Washington and sewed our nation's first flag!  I was in awe of her bravery and dedication to freedom. 

Jay had fun too. 😂. Then we walked over to the Benjamin Franklin Museum. 

Where his house once stood.  The museum was very fun and informative. He must have been a very neat person. Makes me wish I had a time machine. 

Benjamin Franklin and his wife's grave.

Then we went to Franklin square, there is a playground and carousel and mini golf. We didn't golf but Jay enjoyed the chance to run and play and ride the carousel twice!

Then we headed back to the hotel. Jaylia hoped for Chinese food for dinner, but our Ubereats delivery guy apparently needed dinner more than we did and never brought us our food. Uber eats refunded everything plus some for our trouble, and we ate food I'd ordered from a grocery delivery yesterday. Jaylia wasn't super crushed about dinner, so in the end it worked out. 

It was a fun weekend, having one kid and sight seeing is actually really enjoyable 😂 and much less chaotic! But in spite of the chaos, I'm already trying to figure out when and how I can bring everyone back with us and show them these amazing historical places. 

After we ate dinner, I showered Jaylia with the special soap. She is nervous, as are Jon and I. She really doesn't want to wear a hospital gown. 😬 Hoping they give her the "giggle juice" before insisting she put on a gown! 

I'll be keeping things updated as I can throughout tomorrow. Thank you all for your prayers and messages and love. It means so much to us to know we aren't alone.  

Pre-op Day

We were all exhausted yesterday and so this morning  (March 4th) we slept in and missed hotel breakfast. Jaylia actually only woke up about 11:30, we had to grab the shuttle to the hospital at 12. She didn't want any of the food we had brought for her, and when we got to the hospital she was already in a rough mood due to a car seat issue in the shuttle. The only thing she would even consider eating was a frozen yogurt. 

It came out of this cool machine, and there was a little video of a robot making it. Kinda fun. 

After that we met our neurosurgeon who will be placing the bolt monitor to measure her ICP and be in the OR in case of any issues with her brain during the expansion procedure if that ends up happening. He was very kind, and told us about the procedure and some things we can do this weekend in Philly. Jon and I liked him a lot. Jaylia heard more details than she had previously, and that was really hard on her. 

From there we went to get her special cleaning wipes for the night before surgery. 

We also met with the Child Life specialist, she has been very helpful during our prep for this trip. She saw Jay having a hard time and did her best to help. But ultimately we had to pick Jaylia up and carry her outside and sit for a bit to cool off and settle down. Then we went across the street to our anesthesia appt.  We got there a bit early so we visited the food court and the gift shop. Jaylia got some grapes. 

Her llama helped us check in.  But after this we had to do the covid test. She knew what was coming and wasn't having it. She screamed so loud another nurse came in to check on us. 

After that we chatted with the anesthesia nurse practitioner and got our lab orders. This really set Jay off.  We headed to the lab, but realized we forgot her booster seat in the anesthesia clinic. So Jon went back to get it and we waited outside the lab. 😭 She didn't want me to touch her or anything. 💔

After Jon got back we checked into the lab. Jon was able to get her to walk into the lab, but when it came time for the poke, he had to hold her legs with his legs and he held an arm while one phlebotomist held her arm to be poked and I tried to keep her attention while a second phlebotomist did the blood draw. She screamed "I hate needles!!!!" And flailed so hard the one phlebotomist said, "OH! SHE'S STRONG!!!!" 

They were quick though and got what they needed. After that we caught the shuttle back to the hotel. 

Jay got this cool locket at the gift shop. She loves shiny things! As you can see she rebounded pretty well from the hospital visit, but she is definitely processing. We've been talking about the possibility that some of her head will be shaved when she wakes up. 

 She wanted this macaroni and cheese pizza for dinner. I also got her to eat some chicken fingers. I was glad to finally get some real food in her! 

Covid test came back negative, so we are good to go for Monday. We check in for surgery at 10AM EST. 

Tomorrow we are going to the zoo, and maybe the Liberty Bell, and the surrounding area. Hoping to take our minds off of the impending surgery. 

Today things got really real. When we were talking with the neurosurgeon he confirmed that waiting to see with cases like this is really not a good plan. I'm thanking God for the continued confirmation that this is where we need to be and know that He is holding us and guiding us. 

No sleep till Philly 😆

 Wednesday I packed and repacked and melted down and eventually decided that I could not deal with just carry-on luggage. But by the time I was all done packing and hugging kids and Grandma and getting ready to go, it was time to go, at 3:30AM. Jon slept a bit while I was finishing up getting ready to go.  

We made it to the airport (Thank you Lisa!!!) and checked Jay's booster seat box and our big suitcase. We had time to grab some breakfast at Starbucks (Thank you Shannon!!!) And hang at the gate for a bit.  

Jay was excited to be on the plane but very upset when she realized she needed to go potty but had to wait until the seat belt sign went off. 

Once we took off and got her to the bathroom we settled in.  I fell soundly asleep, so much so that Jay moved everything off my tray and climbed over me and went back to the bathroom. I woke up while she was gone and panicked because I couldn't find her!  Jon knew she had gone so it was ok, but safe to say I was exhausted! 

As we were landing in Philly Jay saw these and said, "OOOO CAKE!!!!" 😂🥰. She also loved landing, every quick up and down movement she'd loudly squeal "WHEEEE" 😂 She had Jon and I cracking up! 

Llama Bean also loved flying.

After we landed we went to our hotel and got settled in.  Then we headed to the Red Cross building about 20min away for Jon and I to give blood for her surgery, assuming she's the same blood type as us, fingers crossed.  Jay fell asleep on that ride.  

It's interesting to see the difference in cultures and signage from west to east coast. This sign is one Jon and I've never seen before. 

After giving blood we headed back to the hotel and ordered food in. Jay got a burger as big as her face! She's got leftovers!!  Jon and I got a REALLY spicy pizza! It was good, but burned!!! We also got coleslaw, it was delicious!! 

Then we all passed out. Jaylia is still asleep and it's almost 11:30AM now. We have an appt at 1 with her neurosurgeon so we have to get going here soon.  The hotel has a shuttle to the hospital so that will be helpful!

Thank you!!!

 Over the past week Jaylia and the rest of the family have received an outpouring of support and kindness as we have prepared to leave.  I am so appreciative and thankful for the kind gifts that have made Jay feel so special and excited about going on this trip! 

As you can see she LOVES llamas!  My mom also got into town to take care of Julianna, Jilly, and Jenny.  She is excited to teach the girls some sewing skills, and started with Jaylia.  She really enjoyed it! 

This lovely backpack and the goodies inside are from our friends Steve and Pam and Tiffani from church. The stuffed llama inside has been named Llama Dean 💜

Jay was very happy to snuggle this squishmallow from our friends next door! 

Jenny and Jay were having fun drawing pictures on their e-pads. 

This is care package from Cranio Care Bears, a lovely non profit that provides pre procedure care gifts to cranio kids and their families. 

Sweet note on the box too! 

Jay loved this jewelry making kit from a care package from Julie, Paula, and Lisa. She also named the horse in that gift Burrito and I'm happy to report she gets along well with Llama Dean and Llama Bean. 

Sewing with Grandma. 

This is Llama Dean. I'll have to get a pic of Llama Bean later. 

Thank you all for praying and for helping us prep and prepare and helping my girl feel excited and special.  It means more to us than I can express! 

Well, I've got to pack and do a few last minute things. We fly out at 7am Thursday morning.