shockit

Shockit means "chocolate" in Ruby language. She looooves chocolate, and asparagus :)

Ruby is doing better than awesome. So would that be awesomer? She's doing awesomest. She doesn't mind her neck brace and seems totally normal. Although its hard for her to see what's right below her since she can't bend her neck. Last night she tripped over Marks feet and has a good abrasion and bruise on her chin. Her speech has blossomed since coming home from the hospital and her happiness has been contagious to us.  We saw Dr.Grimmer on Tuesday. He said the wound looks good (good for a gaping hole in a toddlers neck :) and will see us in a couple weeks. Dr.Brockmeyer, the neurosurgeon, hasn't seen her yet, but let Dr.Grimmer know he wants her in the c collar until we have an appt with him the 2nd week of February. 

The nurse who comes most often suggested using a new material for the wound that only has to be changed every other day. Yay! Mark and I change her brace and put on clean pads with it once a day, but it will be nice not to worry about changing bandage business everyday.

the routine-blankey for Ruby on her side, I hold her head,
Mark holds her body, nurse does his thing, we all watch a show :)

Ruby is a great fake sleeper-she can give you tips on sound effects

Mark's mom came in the mornings for the first 4 days we were
 all home from the hospital. She's the best

Jane played school today. She told me her teacher gave her that turtle
for doing the best at "California Speech" (whatever that means)

Jane learned this week that when you are in the crib and lean over too far, you'll bonk your forehead hard as you somersault out onto the floor. She also learned that if you spit and throw toys at your mom there are sure to be consequences. Still love ya Janie!

Liz O is dominating the scene at our gym.
 She's a certified personal trainer and is ready to make some noise!

stop. just stare at that pretty little body. love you Squeeze!

the 2 pictures before this she was scowling at me.
she acts like she hates me a lot of the time, but she doesn't. I don't think.

 

Siri was sick a few days ago. One benefit was that she puked all over our old comforter that we've been meaning to get rid of. Rolled up that oldie but goodie and put it in the trash. We've had this new duvet cover/comforter sitting in our room for months, just needed  motivation to get out of the box.

Last night we went to a meeting with the Sandy City Board of Adjustment (made of up citizens) because our neighbors appealed the permit we got to have a mini half pipe skate ramp in our back yard. They unanimously were in our favor! The neighbors still have 30 days to appeal that decision, but I hope we will get the chance for Mark to have this little, but meaningful, dream come true.

Beyond miracles

Ruby is napping, IN HER OWN CRIB AT HOME!!!  The girls are with Grandma and Grandpa, Mark's at church, and I just downed some reeeel good thai food made by an angel who is also the Relief Society Pres.

Warning-there are some detailed pictures of her mass

I want everyone to know that I KNOW that Heavenly Father and Jesus Christ are real people. I know He hears us when we talk, either out loud or silently, but directly,  to Him. I know there is power and blessings in keeping the commandments given to us through Scriptures, the Temple, and Prophets. You can say "wow, that was so lucky that Ruby is ok". But I don't believe it was luck. I know that Mark and I are trying our best to do what is right (emphasize try). We researched, counseled with doctors, considered how Ruby was doing, and also heavily relied on our pleading conversations to Heavenly Father to help Ruby and her doctors. Our efforts combined with our faith/prayers/fasting and all of you amazing people who care for her and us as well-that is how Ruby is home right now.  And had surgery not gone as well? We would have had to endure much more and for a longer amount of time, but I would have said the same thing. I know challenges are necessary for our growth. Don't like 'em, but they're important.

Ok now to explain...
I got a call Monday January 5th that they were trying to schedule Ruby for surgery Friday the 9th. While on that phone call I was in the pediatricians office taking Jane for her 4 year check up and Ruby to be checked for her RSV.  Jane is a rockstar, and even some rockstars need an eye exam once in a while. We have an appointment next month to take her in since she didn't ace that part of the checkup or the one at home afterward.  He listened to Ruby and said she sounded great, he wouldn't have guessed she had RSV but she did have an ear infection.



Tuesday I got a call that she was scheduled. MIRACLE! Typically protocol after RSV is waiting 6 weeks. It had only been 4 days since she tested positive for RSV.  Thursday we went in for blood work and all was good to go. All you people who have helped us with Siri and Jane these past couple weeks THANK YOU bunches and bunches!  Friday we got to the hospital about 6:30am. side note: Ruby got a bacteria, VRE, when she was in the NICU at Primarys when she was born. Because of that, she has to be 'in isolation'-can't share a room with anyone and every nurse/doctor has to 'glove and gown' before touching her. We quickly went from the big waiting room to the tiny waiting room. The nurse was very blunt and said that is is very unusual to do surgery if a child has RSV unless its urgent. She listened to Ruby and in her words "her lungs sound crystal clear". MIRACLE! The anesthesiologist came in and said the same and that if we felt ok going ahead, he did too. He told us it would take about an hour to set everything up-anesthesia, IV lines (one in each foot, each hand, and one under her collar bone), catheter, and "pins" to keep her head/neck still while they worked. We were told to expect it to take 6-8 hours, but that we'd get updates every 1-2 hours. We handed her off to him and went to camp out in the waiting room. I had a good cry and felt much better :)



The first update came that all the set up had gone well and the incisions had just begun. I gathered my things to go workout at the Jewish Community Center across from the U to workout. I went to an awesome class and then showered. I felt like I could face the rest of the day. When I called Mark as I was starting to walk back I asked him about any updates "Yes, there's been a few" and then he was quiet. "Is she ok?!" I yelled. Yes, she was ok but he wanted to wait til I got back to the waiting room. I made him tell me.
"They got it all off"
"What?!
"They took all of the mass off"
"Are you serious?! Already?!"
"Yeah, Dr.Grimmer is just stitching her up"
MIRACLE and tears of joy. A weight lifted.

I started booking it back to the waiting room. I was sweating and hair a mess. I hugged Mark so hard and smiled big. The wait was only 3-4 hours, not 6-8. Whaaaaaat?! That's amazing!

We talked with the anesthesiologist and he said they did have to give her some blood, but she was stable the whole time. He said Dr.Brockmeyer had talked about possibly needing to fuse some of her "c spine". We haven't talked to Dr.B yet so we don't know any details about that and I'm sure it will dependent and how Ruby is recovering.



We had some lunch, some visitors, and went down to see her once she had been transferred to the Pediatric Intensive Care Unit. side note: dear nurses, thank you for working in any ICU units because it is so hard!
It wasn't pretty. I mean, the room wasn't pretty, but mostly Ruby waking up from anesthesia. Just ugly and sad and hard and sad. She can't communicate with words very well in the first place, so this has really tried our guessing skills of what she needs. I didn't know she'd be in a neck brace-that's been the hardest part. A plus side of being in ICU is that they allow parents to reserve a sleep room in the Ronald McDonald Family Room. It was really nice for Mark and I to only have to go up one floor to eat/shower/sleep. For the 24 hours post op she went through cycles of dozing off, thrashing and trying to hit or head butt Mark and I, and chilling out again. She only wanted to be held, but she's a strong lady so we'd have to put her in her crib to tantrum sometimes. So. many. cords. She was hooked up like mad so when 3 lines came out, that was great, then another 2 on Saturday morning, even better. After surgery friday she bled through the dressing through my shirt and bra but I didn't realize it for a while because I'd been sitting holding her for a few hours.  Saturday morning she was still pretty grumpy, but about lunch time and we got to move to the Neuro Trauma Unit.



Just the week before when she was recovering from embolizing surgery, Mark and I had said to each other, I'm glad we're going to the PICU and not Neuro Trauma. Ha, little did we know.

Her room had a big window. Natural light...more like natural healer. It was refreshing. It had a DVD player and was twice as big as the PICU one. It was calmer, quieter, less busy. It was great. Thank you people for the visits and food and toys-it is all so very helpful!

She got to be totally unhooked yesterday and play around her room. Blowing bubbles with Aunt Liz and again this morning with Mark and I made her happiest. Seeing friends and family cheered us all up. Mark is a generous person and "slept" in her room with her while I went to play in a soccer game and sleep at home. They still had to check her vitals every 4 hours and sometimes give pain meds and have other doctors in and out, so I know neither of them slept very continuously. This morning I got there and they were just waking up. Dr.Grimmer came and between him, the nurse, Mark, and I we changed the dressing on her neck (which means removing the brace, keeping her head still, and then changing it). They did a "purse string" type of closure to help the scarring be minimal. She will likely have 1 or 2 surgeries for the scar. The skin didn't cover where the mass was, so there is an exposed gap in the middle we have to be very careful with. There is gauze inside of it, covered by a pad, another bandage, and one more. Her cute little head is shaved in the back probably a little above her ears. Still enough hair for pig tails though!

After the dr saw her he was ok with her going home. MIRACLE! I had just assumed we'd have to stay another day or two, but they said if we felt comfortable we could go. I was hesitant, but clearly saw she would do better the sooner we got out of there. And what do you know, as soon as we got downstairs to wait at the pharmacy, she finally had a bowel movement. There are certain situations where you love changing your kids poopy diaper and this was one of them.

So, now we're back to Sunday afternoon. Recovery: She's still on pain medication and an antibiotic. She'll have the neck brace for at least 2-4 weeks. Its more of a precaution since they don't really know how the strength of her neck was affected when they cut the muscle that was grown into the mass. We will likely need to start therapy sometime and I think we'll have a nurse come help us change the dressing on her neck once a day.  There are more details regarding the safety of her spine and the gap in the back of her skull that we just don't know yet. We look forward to helping Ruby feel better and starting follow up appointments with the surgeons.

The girls got to be with Liz and Sam Friday

Birthday party for Sam who turns 5 this week!

We're outta here!

Love Love Love you  people! Thank you for helping us through this!

Plan to change plans

I should be paying bills or cleaning, but I'll feel better if I type for a bit.

As you probably heard, Ruby's surgery was canceled today. Monday we went in for the arterial embolizing with Dr.Taussky  p.s. he and his nurse, Summer, are a.mazing. They are very concerned and personable. I'm impressed with the care they've shown us. And we couldn't have asked for a better anesthesiologist, Dr.Lu. Anyway, besides having the surgery delayed 3 hours, it went really well. Ruby was discharged early from the PICU on Tuesday morning (thankfully-a toddler hooked up to cords and machines its not super fun) and we had an ultrasound on her mass before we left. They concluded that there was still considerable blood flow to the mass, but there weren't any veins to embolize. Ruby had had a cold since about Christmas Day, but I didn't think it was more serious than that. Tuesday after a loooong nap she woke up with 103 fever. It broke before bed. The next day after her nap, fever of 104. She went a little over a day without a fever but had a low one before bed tonight.  We were supposed to have bloodwork done yesterday before surgery, but before that Dr.Grimmer asked us to have her tested for influenza. After 2 1/2 hrs up at Primarys yesterday we found out it is RSV (thank you Meagan for taking the girls!).

So, no surgery for our little lady. It was an emotionally/mentally rough day yesterday. Ironic how waiting makes you tired. And then the disappointment of not having surgery and have RSV was quite the combo. In addition, Siri, Jane, and I have all taken turns being sick since Dec 22nd. It was disappointing of course to have this past week be fairly blah, but better now than when Mark is out of town or having the sickies on a family vacation.  Thank you Mom for having us for dinner, it was good to get out of the house.

 I'm sure glad we have cell phones and texting and email, it has made it much quicker and easier to communicate with the doctors. Ideally doctors would wait 6 weeks for a patient to be healthy to administer anesthesia. Dr.Taussky said the glue they use to embolize is permanent, but the blood will form new vessels in time. He said within 4 weeks would be better. Me? I say next week. But I'm the mom, the one with her everyday looking at this huge vascular mass on my baby's neck that is not doing anything but getting bigger. I'm so good at my job though, amazing really: #1 worrier.   All the clinics are closed until Monday, so I'm hoping I'll hear from someone by then.

On a happier note, my beauty Jane had a birthday on December 31st.  I'm thankful we had that to force us to have fun :)  There was swimming at Murrary indoor pool, ice cream, watching Frozen, and jumping at the Wairhouse.  She was spoiled with gifts!  The day before her birthday she got to do some shopping with Grandma Carol, then it was fun with the family on her birthday, and today she got a special date with cousin Sam and Aunt Liz, and Grandma Sandy and Papa Milt stopped by with more gifts. You want to see what a birthday and Christmas looks like if it exploded? Come look at the girls room. Good thing tomorrow is Saturday: Clean your room day.

Sister Jenn and her family made it to their new home in California. She sent a few pictures and they look so happy.  Happy to be in warmer weather, and to not be driving anymore, and to have their own beds to sleep in!  When they left last Sunday I gave her a short hug. The longer the hug=the more crying I do. Sure do love them.

Today I took Siri up skiing, first time this season for both of us!  It was sunny, really sunny. Warmer than here in the valley, and beautiful. We just did the rope tows for a while, but it was enough to refresh my soul.

Its 10:30pm and although Mark is out touring with his splitboard and Dan somewhere, I'm ready for bed. Yes, they are out right now, at night, in the cold but by the light of the moon. As hard as its been to not have this weekend go as planned, I'm glad to be home, to be safe, and to be healthy. I'm looking at Ruby in the video monitor (get one if you have a crib sleeper, they're awesome!) and I'm so thankful to have her. Praying that RSV will give me my happy kid back sooner than later,  that the doctors may make a new plan to do surgery, and that she will be ok in the meantime.

Thanks for your love and concern.

the snow made up for all the sickness on Christmas!