carrot cake

I just ate 1/3 pan of carrot cake. Mark's mom makes reeeel good carrot cake.
Now that I've eaten my emotions, I'll write about them :)  I have time to type because Annie is asleep, S & J are at school and Aunt Kerrah took Ruby to dance class for me (thank you).

I've been worried about Annie and feeling worn down with the newborn phase. Keeping small humans alive is hard! I went back through my "mom journals" as I call them last night to see what Ruby was like.  Very similar weight and development patterns (not smiling much yet, one eye kept going crossed :) When she was Annie's age at this time, the mass on Ruby's neck had just healed over and we got to stop wrapping her head. Annie is better sleeper at night though, she has never had me up more than once in the night since she came home from the hospital. No wonder 3 kids was so hard for me...I wrote that Ruby was up 2-3x at night, although I know Mark would get up too since Ruby was on bottles.  2 nights ago Annie slept from 11pm-7:30 am! She didn't do it last night, but now we know its possible.

 Blanket was given to me by Grandmother Thackeray (Mark's grandma) when Ruby was born.

Annie 2 months

Ruby 2 months

May 2013

May 13, 2013 (Ruby was 10 weeks old, Jane 2, Siri 4)
"Ruby barfed and had a big poop all in 3 seconds. She's got lots of baby acne. Lately she's eaten about 9pm, sleeps about 10pm-3am, eats, then sleeps til about 7am. Her left eye still goes cross-eyed. Her neck is getting strong and she's starting to flex and stand on her legs"
"Amy walked Jane home after finding her outside on her bike in just her underwear"
"Siri got an invitation to a birthday party. It isn't for 2 more weeks but she's already stressing about what princess attire to wear (the theme of the party)"

If you don't write in a journal, start. I'm so thankful to have my written memories to go back to, especially as a mom.  Crazy how fast my mind forgets things!

I just wrote of things that have gone wrong with the house lately or things that bug me...and then I deleted them. This morning as I was feeling down the song 'count your many blessings' came into my head. Yeah, I have things that have gone wrong or bug me, but they're pretty first world problems. I love when my friend Kelli and I sincerely vent to each other and end the conversation with a sigh "oh my first world problems". Puts things into perspective and makes me more thankful.

This morning I was feeling jealous of Mark, that he gets to go out. Work, socialize, be out and about. What about me? I want to go to the gym, just an hour or two by myself please?! And I thought "How did our moms do it?" Mark is the youngest of 7 kids, me youngest of 5. Mark's dad was gone working most the time, so his mom was solo. My dad wasn't in the picture so my mom was working full time (still does) and I know I depended on my siblings a lot. I think that's partly why Liz and I are so close.  Were our moms better moms? Did they struggle as much as I am? I know I'm not the only young mom asking and thinking the same things.

But there was no Instagram. Did they have less to compare themselves to then? The home phone and seeing people in person was it. You ran down the street and rang their doorbell. There was no knowing of who was doing what, unless you actually talked to them or saw them. If that was how things were for me now? I wonder what my thoughts would be like. I'd be associating mostly with other moms, doing what I'm doing. Not seeing what everyone else is out doing, and me wishing I was there. I don't want to wish I was there. This season of my life isn't the same as theirs, and from what I hear, its going to be gone before I know it. I hope I'll be more engaged with the girls when they get home today. I hope I'll remember that I can do more as a Christlike parent, than I could any other job in this world. I want to bypass the good so I can have the better and best parts of life. I'm so thankful my girls love to be home with each other. That I have a husband who loves to be home, to be with us. Who loves to cook and play and work and always be improving himself.

Ok, I can move on with a smile on my face. Life is good.

Jane lost her front tooth at school yesterday!

like Groundhog Day

The bad, repetitive news: Annie still needs O2. She's ok being off during the day, but needs to be on at night. The ox symmetry test from last night showed she was under 90 for 10.5% of the time. Blah.
I was surprised this time, I totally thought she'd pass. I was disappointed. But as I talked it through, I remember her early birth...she's more like a 3 week old. So its ok right now that she's not smiling and cooing like a 2 month old. And, she shows signs of reflux. That may be contributing to the need for oxygen. I wonder too if she has sleep apnea. I hope she'll grow out of these things.

The good news: Having oxygen on just at night, she's sleeping so the tubes don't really bother her. If oxygen is all we need to do to avoid pulmonary hypertension, I'm glad to do it.
She gained 3lbs since December!

vaccines...love the protection they provide, hate the process.

So. Sad.

Had fun watching miss Jane in her first 'indoor' soccer game tonight!

two months

We've made it! Congrats to Mark and I on our two month anniversary of having 4 kids :)

Annie is growing like a dandelion in spring...or a snow pile in winter.  Rather have all this snow than inversion air. I take her to the pediatrician tomorrow for her 2 month appt so we'll see how she's grown. Her chubby cheeks are a good sign though!

I feed her every 3 hours, and at night she usually wakes up once (although takes forever to get back to sleep). She's still on oxygen at night, but off during the day. We'll do another test tonight and see how her lungs do.  She's usually still in newborn clothes, but I've brought out the 3 month stuff as she's kind of between some sizes.  We'll start putting her in size 1 diapers as she's blowing out the newborn ones more often.  Oh, baby bodily fluids. Between spit up/barf, pee, poop she went through 4 outfit changes in 15 hours last week.   She has smiled a handful of times, but its not a regular thing. Looking forward to her develop and show signs of liking it here on earth :)

A couple weeks ago Mark joined the gym I go to...whaaat?! Never thought I'd see the day. Glad he's liking it. He goes to the T3 Burn class and loves it. He did a class with the owner, Justin, who was in town. He came over after their workout and Mark made breakfast for us all. Proud of Mark and his brother Bill with the event they put together for their magazine, Draper Lifestyle. I went to the launch party for a bit last week and met some great people. Read about it here. Saturday we went to dinner with some friends (and Annie), and although it was short because I needed to feed the babe, its good to get out and socialize more.

I went to the Draper Temple yesterday (after the snow let up). Its been a long time since I've been and as I drove there I was thinking about all that I don't know or understand about it. But that I want to keep going and learning. Just like we change our ideas and thoughts about food or fitness or parenthood as we have more experiences and knowledge, the same is with our relationship with Heavenly Father, ourselves, and our purpose.

bless my neighbor who took S & J with her and her kids one afternoon

hey miss chubby cheeks!

driveway sledding!

good enough :)

and I chopped my hair off.

and I wear a bathrobe.

I'm such a mom.

maple glazed carrots

These carrots look delicious. I love trying new recipes, even though it is easier to stick to the same stuff.

Anyway, Ruby had dose #2 yesterday. Siri came along and Alexis visited too. It was as much of a party as can be in that cramped oncology clinic while Ruby got her Nivolumab (brand name is Opdivo).  Very thankful Ruby has no problem with port access. She used to always get scared when it was over because that meant they had to deaccess which means taking sticky tape off around her port. Even that is getting easier and the nurses are amazing.

Siri is trying karate out for a few months. This place is amazing and I love the principles and discipline they teach.

8 weeks old!

sometimes, you're just really really tired

watching snow white

thankful for this happy healthy 6 year old!

Ruby carries this Calico Critters travel case just about everywhere

dinner at moms

Reminisce

Ruby was the cutest chubby toddler...and in a neck brace, so stinkin' cute.

Let's remember January 2015 2 years ago...

http://thacksmack.blogspot.com/2015/01/beyond-miracles.html

And this recent pic of our miracle girl.

Its been really good for Ruby to be a big sister, for the attention to be on little Annie. 

Sometimes I forget how much she, and we, have been through, and I need to remember so that I can be thankful. Just like the cliche says, its true...Each day is a gift.

We have a townhome in Ogden we rent out and today I found out there is water leaking and damage...so beginning the process of repairs and insurance stuff. If you happen to know a contractor in the North Ogden area let me know :) 

The good news is that our washer is finally working, which has come in handy for baby bodily fluids. And the snow has melted for a bit. I've enjoyed the clear skies and seeing the grass. Today I needed to get outside so I just ran a mile and came back. And I was in shorts! So fun!  Well...fun in a hard kind of way. If you told me I had 10lb weights on my ankles I would have believed you. Nice to feel my heart beat fast and cold rosy cheeks.

pie face

Let's remember how awesome this report from last week is "stable in size...no new nodules.." :)

Ruby has the flu and we took a trip to the ER Saturday. Not our fav, but thankful she's ok.  The swab up her nose to test for viruses was the worst. I think they poked her brain.

Mark went to AZ to shoot a wedding and got to stay with these beautiful friends of ours!

 

sickness+cold and gloomy weather calls for indoor creativity. 

They made a city and have had fun all weekend.

We also got a visit from Miss Alexis which included Pie Face as a gift. 

Thank you!

This lady is still on oxygen and doesn't smile yet on purpose, but she smiles in her sleep and with all the sickness in our house its been hard not to smother her chubby cheeks with kisses!

Round 1 Dose 1

  Mark went with Miss Ruby to get her first of 6 planned infusions of Nivolumab. This is the same drug we did April/May of 2016 that we thought didn't work...but maybe it did. The goal is to see if it will shrink the tumors.

I so wish I could have been with them. Its a lot of sitting and waiting and nice to tag team so the other parent can go walk around and take a break. With baby Annie its likely Mark and I will just take turns going with Ruby. This morning Liz came to be with Jane and Annie so I could go to my 6 week follow up appointment. I'm feeling good, and am cleared to be back to regular activity as long as it feels comfortable.

Ruby seems to be feeling normal, no side effects.
Siri called to come home early with a sore throat. Weirdest thing is that she was playing and talking as usual soon after she got home ;)
Jane is switching Kindergarten teachers/classes starting tomorrow. Sadly her teacher has had a lot of health issues this year and is often gone so there are substitutes and between having a new baby and needing to be there for Ruby, I felt like itwould be more stable for her with a teacher who can be there consistently. She wants to switch but I can tell is a little nervous to be the new girl in class. A cute boy we carpool with is in that class and can look out for her:)

What would I do without help with the kids, a friend to bring dinner and neighbors to carpool to school?! Thank you!

Took Annie's tubes off for a while today to give her skin a break. I loved having her cord free!

handle

Some people will say "I could never do what you're doing".  And sometimes, I have written in my journal "I can't handle what I have, and especially nothing more".  But really, I can and I am. I'm doing it. Sometimes one step in front of the other. Because there is no other choice, because I want to be able to handle it. I sincerely believe God doesn't give us more than we can handle.  Last night I packed Siri's lunch, got her backpack ready. Got the bag ready to take to the hospital with Ruby. Washed Annie's hair so it wouldn't be so greasy when Liz came to be with her today :)

 this is "the bag" I always take to her appts

And often I reply to people "I couldn't do what you're doing". And its true.

Its easy to share each other's joy, but harder to share the hard stuff. I am thankful for so many of you that are sharing all of it with us.

I was very prepared to hear that the tumors have grown today. I felt calm. As we were chatting with Dr Holly, as we usually do for a bit before getting the details, she kind of interrupted and said "I have good news, the tumors are stable".  I covered my mouth. I was not expecting that. Miracles.

Imagine your child could die anytime, likely soon, but they don't. And you keep getting more time with them. But its unexplained. That is what is called a miracle and I don't know why, but Ruby's life is a miracle and our time together as a family here on earth has become so valuable to me.

We are wondering if the immunotherapy drug, Opdivo (Nivolumab) she tried last April/May did help...so the plan is try again, do 3 rounds, which is 6 doses. Its a little over an hour-long infusion every 2 weeks.

* update: Good thing I wrote the above as it's already a good reminder for me: later today I was at the pediatrician with Siri for a sore throat and he let me know Annie's lungs, yet again, failed the oxygen test. Washer needs a part that has to be ordered ...one step in front of the other...