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!