Cardiology follow up and the amazing blow out

Took Ruby to a follow up with cardiology at Primarys today.  They did an electrocardiogram and listened to her heart. Everything looks fine.

They are going to up her dose of propanolol since she has gotten bigger. She'll stay on that dose until we visit again when she's 6 months old. If she doesn't show any signs of SVT episodes they'll keep her on that same dose, even as she gets bigger, until she's one. At that time they'll be able to tell if she's grown out of it or not. The dr. said about 60% of kids grow out of it so we hope that includes Ruby.  If not, they can keep her on medication and do an ablation, if needed to fix it, when she's 5.

Toward the end of the appointment I was holding Ruby in a blanket since she was just in her diaper. I had her resting on my legs and she pooped. A few moments later I felt something warm down there, but thought it was something with my own crazy body (seriously, having babies makes you not even flinch at unknown fluids down there). But, magically and mysteriously, it blew out her diaper, missing the blanket but landing all across the crotch of my pants. Yellow poop on black pants is not pretty.  And I didn't even realize that's what it was until I was already walking down the hall. I did a very awkward walk to my car.


In other news, Mark and a kind neighbors spent a cold wet Saturday morning chopping down 4 dead trees from out backyard and haul them to the curb in time for the city clean up.

 Jane is potty training and doing great. She's has had two or three accidents (terrible timing that one of them was with a neighbor), but that's amazing compared to my experience with Siri (soooo many accidents at first).

I'm cleared to get back to doing normal stuff physically, so yesterday I walked to the park and then jogged around twice.  Respiratory wise I felt fine, but I felt all my body parts working to get myself moving.  I better understand why out of shape people never want to take those first steps toward a 5k.  I can't believe how sore I am today! I didn't think I'd be sore at all.

 Baby steps to getting my muscle back.

All five of us as babies

Let's compare baby pictures...

Ali

Mark

Siri

Siri

Jane

jane

Ruby

Ruby

Ruby

the ladies the ladies

Today's Special...ist-Dermatology

Today's doctor visit? Dermatology.
Was it useful? Mmmm, sure.

Like my pediatrician said, it's good for your doctor to be interested in you, but you don't want to be interesting to your doctor. That means they don't know what they're talking about. That is generally true with Ruby. We go see different doctors. They ask a ton of questions, they look at her mass, and we leave with the same "just wait longer, not sure what it is" conclusion.

Dr.Vanderhooft did tell us it's ok to stop wrapping her head but to keep the back moist with some vaseline and a patch of Tegaderm (super thin clear tape). Hopefully now some of Ruby's hair on the front of her head will have a chance to grow in so Jane and Siri won't keep saying how she's bald like Uncle Steve :)

It is good though to see the doctors once in a while to keep us grounded as to what could still happen. I like to think that we'll wait as long as is needed, they'll do surgery, and she'll be totally normal. But in reality, they don't know 100% that it's benign. There could be an array of complications from surgery, and we don't know how doing surgery or not will affect her neck and normal movement. I know its a very very small chance, but there is potential for permanent disability. I'm sticking to my "She'll be totally normal one day" train of thought.


After Ruby's appt I called to see if the primary nurse she had in the NICU was working. Nancy met us down in the lobby and I gave her a big hug. I still feel like she did so much good for Ruby, and Mark and I. We may not have gotten out of there as soon as we did without her.

In other news, I took Siri and Jane outside in the biting cold this morning to do yardwork. After five minutes Siri called it quits and went inside. This afternoon she watched Angelina Ballerina at a neighbor's house. She came home, put on ballet clothes and insisted on dancing outside. She was out there for about an hour and somehow wasn't at all cold :)  Jane-o spent her day in 'undies' and stayed clean and dry all day. She'll do anything for a few mini marshmallows or a starburst.

wheeler farm on sunday was the first time all 5 of us went anywhere together!

this is what you do when its too cold to play outside

happy birthday to cousin kate!

we got a dump truck full of rocks delivered today! We'll be  making a path from the front to back of our house so you don't have to trample through mud all the time

Our street and "2 week" check up

I love our street. The other night we were finishing up dinner. Mark was out on the driveway skateboarding and was soon talking to the couple next door who were on their way back from a ride around the block on their cruiser bikes. A few minutes later the guy across the street comes out to say hi. Siri and Jane finally finish their food and go out to play. I put Ruby in the Bjorn and strolled down a few houses. At one time I counted 8 kids on the street either on a bike, board, or scooter.
Our house it at the crest of a small hill and people usually drive too fast so its a little scary having the girls out their without me. I bought one of those green guys at Costco yesterday and am going to snoop around for any giant orange cones the city may not need :)

our street

Mark calls Ruby our P.O.W.

I took Ruby to the pediatrician today for her '2 week' visit, even though she's 6 weeks.  It was the first time Dr.Witt had seen her and I'm glad they finally met :)  He's the best and I'm thankful he's the girls' doctor.  One thing I learned is that a nice side affect of heart med, propanolol, Ru is on could help to make her mass smaller. Time will tell.  She is 8lb 6oz (14%) and 21" long (25%). I'll take her again in 2 weeks for her 2 month appt, then she'll start vaccines and we'll see where she is developmentally...I'm still waiting for that smile from her that makes you feel a little better when she's up in the wee hours of the night, multiple times, and you wish she's go back to sleep.  We may consider having a therapist work with her depending on how she can move her neck, roll over, etc.


Today's shout outs go to Laury, Ashley, Christina, Liz, Meagan, Mom & John, and Sandy.  Having these three ladies, as close in age as they are, is taking more than me to care for them and I am thankful for people willing and able to help.  I was also refreshed from visits with Alicia and Carole this week.
Love you people!!

I love this girl

...and Ruby is her name

Listen to this song

Holy Moley! The final diagnosis

More like, holy mole!  No really.

Today Mark and I took Ruby to see Dr.Grimmer. He heard back from Dr.Fletcher from Harvard and his findings were similar to Dr.Coffins (the pathologist from Vanderbilt) and the final diagnosis...

Atypical nodular melanocytic proliferation

measuring at her appt today

Also known as, a really bizarre mole.  (Dr.Fletcher gets referred to from all over the world, and has seen just 4-5 of these in his entire career.)

We were relieved and excited to hear this news! Since the biopsy sample was so small, they will still keep a close eye on the growth and aggression of the mass, but they are confident it is benign.  Dr.Grimmer suspects they wouldn't consider surgery until Ruby is at least 6 months old and depending on what the mass does, it could be much longer. They'll do whatever is best for her health and development. A huge relief I see in this diagnosis is that they probably won't have to remove all the neck muscle that the mass has grown into whenever they do surgery.

As for now we will meet with Dr.Grimmer every month, and will start seeing Dr.Vanderhooft, a pediatric dermatologist.  The open 'wound' part of her mass is looking better everyday, and as soon as it is all covered in skin, we can probably just put a headband of sorts on her for aesthetic purposes. 

trying to get chewed up gum out of her pocket
while everyone else listens at story time today

Today Siri found some of the knit Surgilast we use to cover Ruby's head and put it around her head, asking to have a clip just like Ruby. I thought that was so sweet. I cut her a piece and she wore it all evening. What a good sister.  Jane spent her day glopping on the hanitizer and asking for cookies and "itouched".  

Our Stake Presidency came over tonight to visit us, just to see how we're doing. I continue to be amazed and thankful for our neighborhood and ward. We feel overwhelmingly cared for and blessed.  

p.s. the woman a few doors down makes the most amazing bread sticks/rolls/bread bowls/etc. If I ever have to take dinner to someone I'll just add some of her breadsticks to the meal and then the people won't care what else is on their plate.

Today I also noted that I put on my first pair of non-stretchy pants. It wasn't pretty. This certain pair of pants  are a little big for me pre-pregnancy so I know I could squish into them. But they are cut sooo like a mom. Like a mom with multiple kids and c section pooch. As soon as I got home I put them in the DI box. Yes I may have that type of body now, but I don't need pants to accentuate it.

 Mark goes out of town soon to shoot a wedding in San Diego. I know its work, but as my too-small-to-know-swear-words nephew would say "It's freakin' damn awesome".
We are getting a hang of 3 kids as we get into a routine. I can't say enough how thankful I am that Mark is around, able, and willing to help. He's an extraordinary dad.

Wrap

Mark gave me passes to Deer Valley for Christmas (from someone he knows through the wedding biz up there :). But by time we had a window to use them, my belly was too big and the drama with unborn Ruby was too great. You can't let ski lift tickets of any kind go to waste, so Mark borrowed some gear from a neighbor and took Siri up yesterday. They had a blast (minus climbing all those *** stairs in ski boots says Mark).  Siri did awesome and I'm sure Mark did too :)

While they were gone I put Ruby in the baby bjorn and got Janie on her bike to go for a stroll. One part of our street is steep and Jane apparently hadn't learned a good enough lesson yet on haulin' too fast (even though she's already crashed multiple times from too much speed). We had only gone a few yards when I see the speed wobbles come. She swerved, went over the handle bars straight to her head, bike landing on top of her. I was so scared!  She had a sucker in her mouth and I was worried it could have choked her. When she got up she wasn't bleeding anywhere, but her helmet was cracked and the sucker was crushed up in her mouth. I wonder if the sucker actually helped take the impact from her jaw hitting the ground...the rule of biking with suckers is still up for debate.  She is a champ. A few minutes of crying and telling her I'd get her a new treat and she was fine.

special date jazz game

"saving the worms" with Grandma

Ruby girl is doing so well. We haven't weighed her since the pediatrician's office so I don't know how fast she's gaining weight, but she's eating (and pooping!) great.  The open wound part of her mass is slowly growing skin over it and looks better and better. The right side of the mass has always been bigger than the left and seems, to me, to be getting bigger too. Some parts of the mass are soft, some are firm, and some are bumpy.


Intermountain Home Care was supposed to deliver the 'wound supplies' when we got home from the hospital, but days went by and I finally called. Luckily we had enough supplies from the hospital to last, but we ran out of the surgilast (the knit stocking part we put over all the pads and gauze). The size they sent us was too small. I called to let them know and they said it would be a week or more to get it. I called primary's and they couldn't give it to me either, even though they have what we need. So, I called Janet, the charge nurse we know that works in the NICU and she saved the day.
We have a lovely friend who is currently working on prototypes for a headwrap for Ruby so that it can look a bit cuter and be easier to cover her mass. I hope that the wound will completely heal so that we won't have to do all the bandage business and just slip on a styling headwrap for her.

As she gets bigger and stronger I think it will be hard to see her struggle. Today she was on her tummy, lifted her head and it just dropped to the side. Funny for a second that she's 'top heavy', but mostly sad for her.

what you need to wrap ruby

1 month

I'm happy to have all of us together. Doesn't mean its all peaches and cream though :)  Mmmm...peaches and cream.

I'm tired.  I remember that this newborn phase is so short, and then I tell myself that multiple times through the day so I can appreciate this time of our family's life.  I don't know if its from the c-section, less sleep, or not working out for a month, but around late afternoon I get the aches through my back/neck/head. I sure hope I can get out of this funk after I'm cleared to exercise again.  With all of us home too I haven't been very patient with Siri and Jane. I feel like I'm always telling them to stop this or that (especially screaming/crying/yelling).  A benefit of having Ruby in the NICU was that I had time to recover from that brutal c section. Now that she's home I can go through the newborn phase and feel better than I did a month ago.

The saying "It takes a village to raise a child" has never been more true.  Our families and neighborhood are helping raise and feed our family right now and I can't imagine what it would be like without them. Well, I can, and its very depressing.

Mark left about 45min after we brought Ruby home to go shoot a wedding in DC. My mom and Liz helped out at night, so glad to not be alone! He got back Sunday morning and already last night was much better with him here. I'm still pumping and giving her a bottle, so I'm thankful he can get up to feed her at night too. Easter was beautiful. Wasn't that weather perfect?  Awesome neighbors took the girls to church, and when they got back we had baskets for them. Some "mystery easter bunny" person left them tons of princess stuff too. Like, dreamcomtrue for a 2&4 year old, princess stuff. 2 the same of everything which was perfect. An Ariel swimsuit, ribbon twirlers...they. loved. it. The person also left gifts for baby Ruby and a giftcard which I want to use toward a new baby monitor. With Ruby how she is I'm much more uptight about checking on her all the time. If you have suggestions on a good digital/video fancy monitor let me know.
And the place I took my laptop to couldn't help me, said the hard drive was too banged up. I'm having another person look at and hope hope hope they can recover my pictures!!

Onto exciting but not exciting news.
Dr.Grimmer called today. My eyes lit up and I answered. Mid conversation his phone battery died...uhhh....but he called right back.
The pathologist got back to him.
I'm glad my geneticist brother in law braced me when he said he'd be surprised if the knew what it was. So when Dr.Grimmer said that exact thing, I wasn't surprised.  Disappointed I guess. We're hopeful someone will just know how to help her.  Pretty sure each time we have to change the wrapping on her head I say "I hate this". And its true.
How about that mass just falls off, how about that? That would be great, thanks.
But since that's not likely we will wait while they sent the biopsy to a doctor at Harvard. He may want another biopsy sample, but Dr.Grimmer is trying to avoid that if at all possible because he knows how much blood she could lose. So we will hope and pray they don't have to do another biopsy (in which they'd probably take multiple samples) and if they do, Ruby will be able to withstand it.

p.s. With your first kid you feel really good just to have taken a shower and done some laundry. With your third, you forget to even take a shower.