Mar 30, 2009
We had our ward talent show and Jensen played the piano. Two hands! He is such a big kid! I tried to get a picture of him after be played, but he passed on his bow and bolted back to his chair. I am one proud momma of skills. When I was his age I would have never played a piano solo in front of my ward. He about melted my heart when he asked me: "Mom, do you think I knocked her socks off?" He was referring to his piano teacher- to which I replied, "of course you did." Jense thrives on praise. If only my praise was good enough to get him to practice the songs he doesn't know by heart.
John and I also got to perform at the talent show. It was a practice run for a performance we were asked to do for a youth dance. We did a swing performance at a quad stake dance. It was a lot of fun and I wish that John and I could spend more time brushing up on our skills. If you're thinking that we are some kind of pro's... think again. The only reason we were asked is because we taught swing dancing for the Maple Valley stake a couple years ago. After our performance, we taught some basics to some of the couples. Spending an evening with the youth was quite refreshing. I never went to a church formal- I was shocked at the extent of the decorations/food/and themed details.
Did any one catch all the Lindy Hop on Dancing with the stars?? I am so thrilled they finally incorporated some LH. The Lindy hop is our specialty-again, we're not that good! :-) I haven't always been a fan of Dancing with the Stars because I got tired of the same ol ballroom. Ok, so I am watching it because the people from SYTYCD are cropping up in the show. My favorite star is Ty Murray. Could he possibly be any more endearing? Here is what he pulled off tonight....
Mar 29, 2009
The "It" I'm referring to is the sinking feeling in my chest that I knew would eventually come to pass.
Going into Mia's transplant I knew that a day would come when I would get some "bad news." Ok, so this news isn't that bad, but I still had the, 'OH NO' feeling and held my breath while the coordinator explained the plan of action. The results of her blood work came back and her CBC revealed that her white blood cell count is too low.
If the low white blood cell count continues to remain untreated, there can be significant consequences.The most important consequence is increased vulnerability of infections. A person with low white blood cell count is likely to get infections which a person with adequate immunity is unlikely to get.
Another consequence of untreated low white blood cell count is increased likelihood to develop cancers. In a normal healthy individual, cells that show deviations from the normal are usually treated by the white cells as foreign or alien cells and destroyed. In the absence of adequate immunity provided by them, they can continue to multiply and lead to growth of cancer.
Frequent infections impose enormous strain on the body, which brings down the health of the individual.
Soooo we will re test her in a week.
Another It happened- a great good one though. Little M rolled from her tummy to her side. How awesome am I that I am reporting a quarter of a roll? Her physical therapist asked me how much time she spends on her tummy. After a long nervous laugh and a big cheesy smile- she assumed it wasn't long. Our homework was to put her on her tummy. After a few tummy times Mia rolled... not over....not completely around, but to her side!! Go Mia Go!
AAAnd- she is a whopping 14 lbs now. We were hovering around 13 lbs FOREVER and she finally broke on through to her daddy's birth weight. Ha, just kidding- John was 10lbs 10oz.
Mar 28, 2009
Congrats to number 14!!! Now you all have to look back and see if you were number 14. Ellie picked the winner. When I was explaining about the giveaway and how we had to pick somebody to win, she paused before picking a number and said, "Mom, if you don't win... that's OK." Thanks Elle- I appreciate the last minute pep talk!
If you are the lucky 14, email JoDee (firstname.lastname@example.org) your favorite item from her store.
I'm off to a b-day party! Happy Saturday to You.
Mar 25, 2009
There are so many people who have helped our family- THANK YOU! THANK YOU! I can't imagine ever surviving the past year without the love and support we have received. Now that Mia is on the mend and we need to do our part to spread that love to others who need it.
Paul Cardall is an amazing musician who is currently waiting for a heart transplant. I have gotten to know him briefly through emails. He grew up seeing the same nurses, doctors, and surgeons I did. He has been on the transplant list for 217 days. You need to read his blog- he is so inspiring! His piano playing speaks to the heart- he has been given one of God's great gifts.
There is a benefit concert to be held on April 6th at 7:30 pm for his family. If you live in Utah please consider going to this concert. With artists like these, it is sure to be a fabulous night. There is also going to be a sideshow of sweet Gracie Girl. For tickets and more info go HERE. You just have to go, I mean...Colors??... really? (Big sigh). Colors pretty much defines my college experience! I love all of these guys!! Paul maybe you can hook me up with some autographs ;-)
If you are unable to go to the concert I strongly encourage you to purchase one of Paul's CD's. You can also listen to some of his music on his blog! He is patiently waiting his gift of life... let us help him make the other stresses in life not so stressful! Thank you all!
Mar 23, 2009
For all of you dancers out there that want to join in the fun...start saving up. Don't be shy now- you know you think you can dance. EVERYONE can dance! SYTYCD is my favorite show ever and I can hardly contain my excitement to be taught by the choreographers of the show. Too bad I have to wait so long!!!
A year ago when my dance teaching career... (cough cough) I mean pastime was in full swing I told my friend/boss "Princess Pookie" that NO MATTER WHAT we would go to the Pulse the following year. In 2008 I was pregnant and she went without me. I knew that nothing would keep me from going in 2009. Weeks after our big plans for this year I found out about you know who.
Don't get me wrong, I am so thankful that I am HOME with my nina; gladly giving up those big plans I made a year ago. However, Next year I am going to need a wee break. Here's the scoop, we get a discount if we go with a group. Jo Dee (Princess P) is stinkin hilarious! If you don't believe me click here. She is full of fun fashion & fashion faux pas. We guarantee a fun weekend or your money back (not really) :-D email me if want to come @ email@example.com- go ahead- copy and paste that puppy into an email! Embrace that inner dancer.
On to the Giveaway-
To show how fabulous we- I mean she is- she is hosting a giveaway on this blog. Yep, GIVEAWAY- no strings attached. She has an Etsy shop full of fun, quirky, and girly accessories. She is giving away a Princess Pookie item to a lucky reader of this blog. The best part is you get to pick WHATEVER YOU WANT. I repeat- if you win, you pick your favorite piece from her collection. Now that's a giveaway!
Just leave a comment on this post and we will randomly pick the winner on Friday at midnight. Good luck.
Mar 20, 2009
She is learning to sit up on her own, but taking her own sweet time. Some times we call her bag-a-bones or sack-a-potatoes. John likes to call her limp biscuit- lovely.
Don't let the bottle fool you, she merely dabbles in bottle feeding. This is the exact face I get when I try to feed her. She smiles, laughs, sucks a little, smiles some more, gums the bottle, then after a few swallows she locks those lips. If you couple this with her new talent of extreme back arching- she wins every time. So....she still has her feeding tube. I have a love/hate with the thing. Love it for meds... and pretty much hate it for everything else.
Love this FACE! I just want to eat it up...
Ok- there is something to report. Miss noodle leg learned how to straighten her knees. Now she is a jumping maniac in her jumperoo. It is super entertaining. She still won't stand in my lap, but I am not in any hurry. She actually had her first physical therapy session today. I have been avoiding therapy because I wanted to have some time with my wobbly infant. I should have started sooner because I LOVE her therapist. More on this later.
Mia finally gets some revenge!!
Ellie still hasn't let down AT ALL. In fact she is now starting to pick Mia up and carry her. No harm done yet... but it's only a matter of time. Often times Mia will be innocently swinging away in her swing and Elvis will pick her up which makes Mia nervous and she fusses. When I come running at a dead sprint Ellie looks up and says, "Mom, Mia was asking for you."
Ellie is always eager to interpret why Mia is fussy. "Mom, Mia says she wants me to hold her." "Mom, Mia wants a bath." "Mom, Mia said she wants to watch me play atachillie (don't ask)."
I enjoy her interpretations and usually humor her silly requests for "Mia's needs." However, when I try it- Ellie doesn't buy it.
Me: "Oh, Elvis, Mia says she needs a break from you in her face." To which she replies matter of factually "Um, she can't talk yet."
Wish me luck with that one!
Mar 19, 2009
On to the post...
Last night I couldn't sleep. This isn't unusual. I have anxiety... let's face it. The anxiety usually only shows up when it's time for me to sleep. Ok, maybe it's not anxiety... maybe it's fear. Yes, fear. No, it's not fear either. Alright it is an emotion that I can't describe. Mostly last night I was overwhelmed.
John has asked that I don't visit Gracie's blog as frequently. I have been reading and re reading her mom's words and last night was just TOO MUCH!! Not that John is insensitive, he just has a difficult time watching me cry so much, and when I read her blog I cry- without fail. I know my posts seem to be going from one extreme to the next, but in the end I want to document all of it... The cute things my kids do all the way to how my heart is aching for a friend who just posted about her babies funeral.
This post is remembering how much my life has changed.
If I had read this post one year ago it would have been heartbreaking and I am sure I would have sobbed just the same. However, the level of awareness is magnified immensely and here is why:
I spent four months in an ICU desperate for someone to say "yes" and choose to donate life for our Mia. On Mia's good days the wait was pleasant. When she was crying, heaving, and struggling to breath through a tube.. it was a suffocating! Mia was after all our precious baby that we adored and wanted to to take home for keeps. On days that I lost hope and thought that no one was ever going to say yes, I knew that one day I would be looking back on this time. There would be an outcome and it could only last so long. Mia would either be given a angel heart or she wouldn't. In my heart I knew she would be given a second chance... and she did.
The night we got the call I held my sweet baby in my arms knowing the next time I held her she would have a new heart. At that time I also felt keenly aware of another mom's sorrow. I don't have any information about Mia's angel, but knowing that there was a mom potentially given a few hours to hold her little baby for the last time is just too much! It is truly an amazing gift. I am completely humbled being on the other end of what she (Michele) was going through. I am so grateful for parents like Gracie's who go through so much and then chose to donate. I am amazed by the fact that their minutes were numbered, and they were able to say goodbye when it was time. I am so grateful for parents like mine who prayed so fervently that my baby would just hold on. My mom often told me how much time my dad was spending on his knees- for me it brings new meaning to Malachi 4:6.
The pictures from Gracie's funeral paint a thousand words. Read the fourth paragraph of her post and you will understand why my life has changed. My sweet Mia was also headed to an OR to be prepped, but the Jet was headed in her direction.
Mar 17, 2009
1. What is something mom always says to you? "Stuff she wants to say." and Dad? "Tiger all the time."
2. What makes mom happy? "Something that’s really pretty."
3. What makes mom sad? "If there’s something like a monster." and Dad? "When rooms aren’t clean."
4. When does your mom laugh? "America’s funniest videos" and Dad? "When he says, 'this house has rats' when the house is messy."
5. What was your mom like as a child? "A little pretty toy, She looked like a baby."
6. How old is your mom? "seventy" and Dad? "Thirty-twelve."
7. How tall is your mom? "Taller than us."
8. What is her favorite thing to do? "Have fun with us" and Dad? "Be a tiger with us."
9. What does your mom do when you're not around? "She cleans I think." and Dad? "I think hes sad. You work on your computer and do stuff you need to do like send a blog to somebody."
10. If your mom becomes famous, what will it be for? "Because shes so pretty." and Dad? "Cause he would look like a race car guy- you would look really cool in that suit."
11. What is your mom really good at? "Taking care of us and making foods." and Dad? "You’re really good at being a tiger."
12. What is your mom not very good at? "Lighting fireworks." and Dad? "I’ve never seen you do something like that- like if you weren’t looking at what you were making you would mess up."
13. What does your mom do for her job? "She cleans rooms." and Dad? "He cleans rooms."
14. What is your mom's favorite food? "Salmon." and Dad? "Salmon." "My favorite food is space noodles and salmon, but I don't like spiders in a sandwich."
15. What makes you proud of your mom? When she makes something that I really like. Something cool for boys! and Dad? "When he lights fire works." and Mia? "When she smiles at me."
16. If your mom were a cartoon character, who would she be? "A race car" and daddy? "Speedracer" and Mia? "A little transformer crystal."
17. What do you and your mom do together? "We make stuff for Ellie that she would like." and Dad? "We light fireworks, look at it and then run."
18. How are you and your mom the same? "If we were both a boy." and Dad? "if we were two girls."
19. How are you and your mom different? "One eyebrow" and Daddy? "Tall and short."
20. How do you know your mom loves you? "Because I look really cute." and Daddy? "Because I’m so cool."
21. What does your mom like most about your dad? "When he laughs and then you start laughing." and Daddy? "when shes funny."
22. Where is your mom's favorite place to go? "Having fun with her friends."
Interpretation: John bribes the kids with fireworks. They really really love fireworks and john has a stockpile in the garage. Yes, he is the annoying neighbor that is always lighting off fireworks at bed time. I've stopped reminding him that it's not exactly legal.
The kids adore their dad (see # 12) and one of their favorite things is being chased around that house. When it is time for bed the kids get their pj's on and brush their teeth then come down stairs with a huge grin on their face and say "surprise!" They follow this up with a, "can you be a tiger now?" The tiger never gets old. They LOVE it. He chases them around and makes this crazy scratching noise while he attacks them. They ask me to be the tiger, but I don't hold a flame to the daddy tiger.
I swear I have NEVER fed my child spider sandwiches! I do let them have snacks in Spiderman sandwich bags... correlation? Maybe.
I think he knew he was earning some major points with the "she's so pretty" business. Daddy is teaching him young!
Apparently we clean A LOT! John does occasionally say, "this house has rats." Sorry hun, we never get to leave this place and the kids are busy busy busy! The house is "clean" but the toys/ dress up clothes/ blankets can get out of hand. The kids also throw everything off of the shelves in their closets and play "castle." This is where the firework bribes come in so handy!
Space noodles are a family staple. You can buy them here. This is my aunts company, and she keeps us well stocked. Thanks Lan!
Lastly, I do in fact have two eye brows but certainly was not blessed with "good" eye brows. In fact, I have absolutely no shape to my eye brows! Oh well. I think at this point of the interview he was just throwing out answers, and was still loving the fact that he was pushing back his bedtime.
You've got to try this with your kids- it's hilarious! My friend Rebecca posted it on facebook and I got a good laugh. I think we will try and film Ellie's interview... stay tuned.
Mar 16, 2009
This is a fun blogging idea from another heart mom my. Want to participate? here's the info....
Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
Mar 15, 2009
Mar 12, 2009
Mia loves getting her echos. She doesn't stop smiling. My favorite thing about the echos is watching her hold onto the fingers of the tech. She thinks she knows a thing or two about where that prob should go. She also likes to pull off the leads. It cracks me up!
Gearing up for labs. Poor thing- I think she has caught onto the the fact that a warm compress equals owie pokes. This is by far the worst part of our visit.
This is our man Hector. Let's just say he has saved me from going insane. He is the only one who can get blood from our little one. Mia has to have blood draws every week and without Hector; Mia, along with a lot of other cardiac babies would be hatin it! He has superhuman vein finding powers. We love you Hector! (Heather my sister in law was with me and took the pics. Read on to see why she was there.)
Meet baby Karlee. She is another transplant baby... and she is on THE FLOOR. They are practically out the door. Yay Karlee! Both of the girls were fast asleep, so we didn't get a pic of their faces, but they are so happy with hearts that work!
I also saw Victoria's grandma, but her mom wasn't there. Also, it was Daniels birthday. I saw his mom briefly but didn't get to see him. Happy Birthday Daniel! We just missed Shayla- she is finally out of the hospital. There are so many transplant babies in Seattle right now.
This is our little buddy Joshua. He is all hooked up to the bi-pap. He stole my heart when he looked at me with tears rolling down his cheeks. He did not want that thing on his face and just wanted someone- anyone to rescue him. I saw the same look in Mia's eyes so many times. As a parent, you have to contain your frustration and instinct to lash out and make it stop. So many helpless feelings came rushing back seeing him cry. We first met Josh when he was next door to us waiting for his angel heart. He was a lively little guy and I had a hard time believing he needed a transplant. This picture was taken right after he was extubated...this is great news! Please pray for sweet Joshua- he has had a long road.
Last but certainly not least is MY sweet my little nephew Gavin. Two days ago my sister in law Heather called telling me she was on the way to Children's and something was wrong with Gavin's heart. I couldn't believe my ears. I had just seen him a few days prior and he looked perfect. Apparently he has a kink in his artery( coarctation of the aorta.) He is going to have surgery in the morning. I can't believe this has happened. Right now they have him on the medicine that Mia was on. It is super nasty medicine that keeps the PDA open. I guess this medication makes kids feel awful and sensitive to touch. Poor kiddo! The nice thing is they can go through his side and it will be a relatively quick procedure. After visiting with her and giving her all of my ICU advice I walked away as the visitor and she walked back into the NICU. For so many months I would say goodbye to my visitors and walk back into where my baby was. I never thought I would be visiting a family member and be the one leaving. Esspecially so soon after our experience with Mia. He is such a cute little guy. I am soooo glad his doctor ordered a x-ray and they caught it before his PDA closed. It is a miracle! We love you Gav and will be praying for you.
Mar 8, 2009
This is Tim, (top right) founder of Jamie's Heart Foundation. He started a foundation after losing his little daughter to a congenital heart defect. We were invited to the second annual gala that was held in Tacoma. It was a beautiful evening with heart themed everything. I loved all of the heart details! I am in awe of how many parents reach out to other families experiencing what they went through with their own children. Tim and his wife have created an amazing legacy for their daughter, and I felt privileged to be a part of it all. My favorite part of the evening was watching a slide show of Jaime's journey, it was really touching. Now that I am a heart mommy I look forward to many more years of events like this. This is an incredible foundation! Thank you Jamie's Heart, and Erika Kate foundations- for showing us heart families what amazing parents are given these miracle kids.
When we got there we there were a few friendly faces. Jesse (pictured with Tim and me) is Luke's mommy. I was so excited to see her. She's Great! We got to visit, and I met other heart families that live locally.
The other friendly face (top left) is my cardiologist Chris Stefanelli. This man is responsible for keeping me alive ;-) Dr. Stefanelli is a wonderful doctor, despite delivering the news that my baby would need a transplant- all of our visits have been happy ones. I got to meet his gorgeous wife who is also a doctor. I don't think I have blogged much about my own heart defect, but I too have a congenital heart defect. Yes, it's true. Mia gets her lovely heart gene from her moma. I have had three heart surgeries and currently live with a donor valve in my heart. CRAZY I know. Who knew I would have a transplant baby... isn't my heart problem enough??? Seriously!! The valve I have now lasts 10-30 years. I am 8 years out- so this ticker still has some tick in it. So here I am a heart patient taking care of my own heart patient- that's comedy folks... a very sad twisted comedy.
To be honest I was always proud of my heart problems. I liked missing school, spending the day with my mom, eating whatever I wanted, and stealing purse loads of sugar free suckers from the Dr. offices. Minus the surgeries, it really has been fun to have something unique about myself.
Boy o Boy do I feel differently being the mom of a heart patient. Obviously what I have been through with my heart is a far cry from my sweet little Mia's experience. No amount of sugar free suckers will ever mask the intense pain my heart has experienced this year. I hope at my next check up my heart will not reveal the torture it has been through. Someday I will blog about my own heart journey. For all you moms with mild to moderate heart defect babies, know that my mom was able to make it a positive experience for me! Until Mia- I knew no heart sadness. With each smile she makes the sadness disappear. I worry about her future, but try my darnedest to live for today. Someday Mia and I will do something great for the CHD community, for now I am just going to let those little smiles heal this mommy heart.
Mar 6, 2009
The other morning I had a dream that Mia’s feeding tube came out and she magically started taking a bottle. I woke up the happiest mommy alive! Finally no tube, finally no medical equipment, finally no gagging around the clock.
My dream came true, maybe not in the fashion I was hoping, but it did come true. One week ago she wouldn’t stop gagging, even after throwing up her entire feed. Reluctantly I pulled the tube and she fell fast asleep. I had the go ahead to feed her by mouth and not worry about getting in the volume. The plan was to teach her that she had to eat in order to make that feeling in her tummy go away. I woke up at 6:30 ultra groggy because I logged in about two hours of sleep. I prepared her bottle and to my surprise...she started to drink it up. Maybe the desire to eat is increased when you don't have a tube going down your throat. Over the next two hours she drank down 60 cc’s. I couldn’t believe it- I was elated. Over the course of the day she averaged about 30 cc’s a feed which is NOT ENOUGH. She was still drooly so they told me to keep going. They aren't worried about her weight, but didn't want her to get dehydrated. I took her for a blood draw the day before and one of her labs came back with one level showing she was borderline dehydrated. I had to put the tube back in- AAARRRGGHHHH.
The problem: Her stomach is not used to any volume whatsoever. Her dose is spread over an hour. Babies generally take twenty minutes or so to eat. I think once the rate is where it needs to be she will be sucessful at taking a bottle. When she drank 15 cc’s in 3 minutes her tummy was maxed out, because it isn’t used to taking so much so fast. big sigh.
Since her trial her stomach must have gone down in size so now her feeds are going in slower than previously. I guess I will slowly climb up in rate again- it is so difficult to back track!
If anyone has any ideas about teaching hunger let me know- I am desperate. Mom's of peemies.. Are you out there? ANYONE? We do have a feeding therapist- but I am looking for the magic recipe. Easy button please!
Mia does love sitting in her highchair with us at meal time. She is very observant and watches us all eat, but when I present her with something to eat her lips are glued shut. She does like frosting, but a frosting diet could only last so long.
* A huge thank you to everyone who visited Gracie's blog.
Mar 2, 2009
This is what I propose. Today is going to be the the most difficult day in their lives... let's let them know that they are not alone. Gracie has had such an impact on so many of us. Please leave a comment on her post with "We heart Gracie" somewhere in the comment. If this is all you write- that is perfect. I don't know what to say myself, all I know is the pain I feel inside for this family and want them to know there are people out there that care. Care that they are doing the impossible Today (Monday). You can also email them instead if you would like. firstname.lastname@example.org
If you haven't read about Gracie yet click HERE and grab an entire box of Kleenex and don't plan on moving from your couch for the day. I am really sad- I may need some of you to come over and comfort me too.
So spread the word about "We heart Gracie" and hold your little ones extra close today.