Dec 29, 2008

A Big Fat Christmas Post


We start the festivities off with a little sledding. Not so much sledding as being pulled behind daddy's truck. I was pretty sceptical at first, but after seeing the sheer joy on their faces I consented and took some pics. He drove slowly- and there was not another soul out driving in the neighborhood.

After hours of truck/sled fun they hung out by the fireplace for awhile. The kids really like getting "toasty warm."


On Christmas Eve John took the kids to his parents house for the annual Christmas party. Every year tamales are served for Christmas Eve dinner. This is a tradition from his mom's side. During the depression John's great grandma made and sold tamales. There is usually a Tamale making party to get ready for the feast.

Every year there is a big production to enact Jesus' birth. Jense got to be Joseph this year. This is Karate Joseph.
Ellie getting her little cousin ready to be an angel. Take a close look because it is not common that Ellie and Angel go in the same sentence. Read on and you'll know why.


These are the wise men


The heavenly angels


It is a sweet little program. Last year it switched over from the adults acting it out to the kids acting it out. Due to the size of our family and due to the high fertility therein, there are always several candidates each year for a live baby Jesus. Hudson was as cute as ever and seemed to enjoy his acting debut.

John's mom sews and sews and sews practically all year to make nightgowns for all of her grandchildren. These are two of my sweet nieces modeling their cute nightgowns. Mia lucked out and got two.
Jense with his oldest cousin Savannah. This girl is golden! She always gets put in charge of watching the kids.
Ok- here is where Ellie fills in the rest of the crew of the cousins that "Santa" isn't the real Santa and just "Levi's dad" -Gotta love this kid. Usually we see glimpses of Santa escaping out in yonder field or around the side of the house, but this year due to some VERY upset kids who missed the sighting, Santa actually came inside to see the kids. That actually was a lot of fun for the kids and probably will be a new norm for the years to come.

Daddy reading Twas the night before Christmas to all of the kids.
Jense talked about making cookies for Santa for a month. I think he was more excited about leaving out the cookies than he was opening up his gifts on Christmas morning. Yummy cookies compliments our our neighbors who dropped of the dough. We really enjoyed all of our tasty Christmas treats- and our secret Santa.

Making his finishing touches to his note.
What holiday wouldn't be complete without a titch of identity theft. These are the flowers that I sent to myself!! On the way home from the hospital I stopped to get some last minute gifts. My credit card wouldn't work, which is something that has never happened before. I called the company and they told me that they froze my account due to "suspicious spending" AWESOME! Apparently someone used my credit card number to sign me up for a bunch of online services. Including one from FTD. I called FTD being the detective that I am, to find out where the flowers were being shipped. She told me that according to the order, they were ordered by me for me. Well at least whoever got ahold of my info had the decency to send me some flowers. I couldn't wait to read what the card said ;-) I was thinking it would be a pretty sweet bouquet because it was over $40. I guess six roses are a little more pricey than I thought. I will probably never know how they got my info- I had my card in front of me, and I don't have any statements mailed to me. They are getting tricky. Moving on...


Santa's stockings were a big hit. It was fun to give my parents stockings after years of them being Santa for me. John was the shopper for every ones stockings. He was very thoughtful with his purchases. He also thought he was pretty funny. John has a need to make me laugh or at least try. His Christmas joke was the twilight poster (next to my stocking) which was promptly hung up next to my side of the bed. Ellie keeps asking... "daddy, is that you?"

The opening frenzy! We take turns opening which makes Christmas last a little longer. Ellie ended up with more gifts than the rest of us so we had her open two at a time.

The thank you hug after they opened the gift from one another.

The best thing about Christmas was being home, and being home with this little babino. She is such a sweet baby and is the best Christmas present I could have ever asked for. Christmas is a great time to think about what is important to you and reflect on how blessed you have been throughout the year. I doubt there will be another year like this one. We have been through so much together as a family and are strengthened because of it. I don't take life for granted and I hold that little sweetie pie knowing what a miracle it is that she is alive. Also, I think of her donor family and how they are feeling on Christmas day. I hope they can feel of our gratitude to them. We are incredibly blessed, and have seen many miracles. I now know a greater level of Joy because of Mia. I have a better understanding of the atonement and what the savior did for all of us. Christmas will never be the same for me.

Thank you to everyone who has done so much for our family this year. We could not have made it on this journey without many of you!! Merry Christmas to you all!!

Dec 27, 2008

More Mia


There is a Christmas Column about Mia in tomorrows (Herald) paper, if you want to check it out. There will also be a article in the News Tribune on DEC 30. Happy Reading.

Merry Christmas!!

Dec 22, 2008

Steroid Baby

Last week at our appointment- we ran in to one of her surgeons. He took one look at her and said, "yep, looks like she on steroids." To which I responded, "HEY" (he knew I was teasing of course). He proceeded to tell me that her look would "go away." Well, I don't want it to go away! I think she is stinking adorable. THEN when we went into her appointment one of her cardiologists said, "we need to start doing something about that second chin." This time I just laughed. Sooo, this is what a baby on steroids looks like. Honestly, I don't think she would look that much different without the steroids. I have chubby kids OK.
Mia has been doing GREAT! Aside from the heinous diaper rash, blood in her stool (yes very alarming, but we can't figure out what's causing it), and her uncanny ability to toss her cookies... she is doing wonderfully. She is Happy despite all of this. We are trialing her on straight breast milk with no extra calories because it contains dairy. I didn't eat dairy with my other two children and they were heavenly. This may help with the blood if it is indeed a reaction to dairy. She is just on so many medications! We switched her from CellCept to Imuran- but it didn't seem to help... it's just frustrating. Wouldn't it be nice to have a crystal ball to tell us what she truly needed and how much? Crystal Ball? Anyone? Someone? We are literally trying every remedy known to man to try and and help her bottom. The only thing that seems to be helping a little is water and air drying. The only thing we haven't tried is crushed up wasp nests...yes it was a suggestion online. If you have a foolproof remedy let me know!

Dec 18, 2008

These are a few of my favorite things...

Christmas is here. I LOVE Christmas!

The kids have been busy doing all things Christmas. We pulled out all of our fun Christmas decorations only to discover a wonderful Christmas surprise. Many of our decorations were soaked. I couldn't figure out why everything was so soggy. I unwrapped the big snow globe (it was bubble wrapped to the max) and everything seemed to be intact. Upon closer observation, all of the water leaked out somehow covering many of our beloved decorations. OH WELL. I tend to go a little overboard decorating for Christmas so there was plenty of holiday festoonage that made it unscathed.

After decorating the fireplace Jense asked, "Mom! How does Santa get out of there?" hmmmm... good question. I find myself saying "Santa's Magic" at least twice a day.

The kids decorated the tree this year. We have never had a theme to our tree. The tree consists of all the random decorations we have collected over the years. I am really attached to our ornaments and I get all excited when we unwrap them. If our house were on fire- my Christmas Ornaments would be up there on the list of things to try and grab before running out of the door. Yes, I have a list.

A new addition to our tree this year are these sweet little angels. We are so thankful for our donor angel and thought these ornaments were a good reminder of what a wonderful gift our family was given.
I can't say that snow is one of my favorite things, but I do love it for the first little while. I do however love kids in the snow. Snow tends to bring out the little kid in many adults. My husband is out taking advantage of how an automobile can spin around in the snow. He also never fails to throw a snow ball aimed at my head. He has passed on his love for the snow to Jense, who wants to go sledding constantly. He also gives me weather reports throughout the day on the snow status. I will say this about snow in WA- the state shuts down. No one wants to drive in the snow except ME. I love how there is zero traffic when it is snowing. Last year I did the majority of my shopping while it was snowing.

Now this is commitment. She really wanted to catch snow in her mouth, but didn't want to get it in her eyes. Why is this girl not wearing a coat? Who is her mom?
Unfortunately we have only made a gingerbread house and decorated cookies. Christmas activities have not been as plentiful as years past, the kids don't seem to notice.

My Faaaaavorite edible thing about Christmas is all of the delicious candy cane + white chocolate/ milk chocolate/ toffee combinations. Andes mints have a delicious version, Ghirardeli peppermint bark is to die for, and the candy cane roca... yes please!

What Holiday favorite list would be complete with out these two girlies. Ellie is enamored with her little sister. My mom and I spend half of our energy helping Ellie love Mia and the other half talking care of Mia. I am sure the need to be involved will wear off, and I will be begging her to bring me a diaper. I definitely got my Christmas wish early- and honestly don't feel like I need another Christmas gift EVER. More to come on Mia.


We have been listening to Christmas music non stop! No, not from my I-Pod- that has been lost since the dance festival. Hey, dance festival peeps- have you seen it? It was loaded with awesome Christmas music...sniff sniff. Soooo we have been feeling the Christmas spirit compliments of the Holiday Classics channel on the TV. I really love all Christmas music. Ok, there is one song that I could do without. My little sister and I share a distaste for "simply having a wonderful Christmas time." I don't know why- it just bugs. My favorite song is "Oh Holy night." My Christmas isn't complete without hearing Jennifer C (friend from church) sing this song. She is amazing! I think music is what makes the holiday!

Ok- what are your favorites?

Dec 14, 2008

Natsl


Today is my sisters Nat's B-day. She moved to Washington to help me... and maybe a little because she got a job out here.

She is Mia's other mommy and spent most of her time off- rocking Mia in the hospital. I am trying to convince her to live out here permanently so I can have at least one of my sisters close by. I have loved our time together!! There is nothing like a sister to validate everything about you. Thanks Nats for EVERYTHING this year!!

Happy B-day Natsl-

Couldn't Resist

Send your own ElfYourself eCards

Dec 13, 2008

Long time no Post


Well, not that long-

This post is for Mia...

Baby M,

Two nights ago we took you to the ER. I really didn't want to take you, I was tired and knew you just needed some gas drops. We were at the hospital less the 24 hours prior, and we would be going again the next morning. I was casually telling the coordinator about your day, and then got a call back saying that we needed to bring you in. The doctor wanted to make sure you didn't have some sort of blockage in your intestines. Not wanting to go AMA, (which I was very temped to do) we loaded you up with your trusty feeding pump and drew up all your meds for the night. When we arrived they took us right back in a room far from the normal ER action. When I got you out of your car seat I discovered that you had done exactly what we were waiting for you to do at home. The good news was... you got it out! Not only did you get it out, but you managed to spread the loveliness all over your cute little outfit. Having accounted or everything but a spare outfit you ended up wearing an infant hospital gown. Your mom was completely unaware of these beauties during your entire life at the hospital. Your grandma and I got a good laugh about the tiny hospital gowns and the fact that we drove all that way just for you to... ya know. They didn't even take any x-ray's of your belly, they just let us go.

We are loving our time with you and can't seem to put you down.

Here's to tiny hospital gowns and the cuties that wear them!

Dec 8, 2008

A Good Day

We made our last minute attempt to have a clean house before the news guy showed up. We decided to pull out all of the Christmas stuff last night- NOT SMART. So we ended up throwing Christmas back into the bins so we appeared somewhat presentable. King 5 wanted to come last Friday, but I was SOOO sick and tired. They agreed to come today instead. Mia is becoming quite the little spokesperson for organ donation. We want all the little babies to be blessed as Mia has.

Mia's first clinic appointment was today. There was some confusion about checking in (mostly the fact that I had to check in THREE separate places), and there were no orders for her lab work. We spend a good hour trying to get ahold of the right people, but we finally made our way to her apt. No new news except that her cellcept levels were extremely high. They didn't get the results until today (from friday)- soooo I have been pumping her full of a medication that was at a toxic level all weekend. Poor Mia.

The best news of the day however is that one of Mia's roommates is getting her angel heart tonight. This little girl has been through so much. Please pray for her family and the donor family. The transplant is in a few hours.

Here is the link to King 5's story from tonight. It's titled "Heart Transplant baby gets 3- month check up." Where did they get that info? It will be one month tomorrow. I am always surprised by what material they end up using. Click HERE to watch.

King 5 News Tonight

I think that our friends from Channel 4 and Channel 5 are glad to have a happy story and have done followup interviews. Each interviewer has expressed the excitement for us, and it does feel good to be enjoying our happy time with our baby. We had an interview at our house this morning and we will be on the news again tonight. Channel 5 at 5:00. Since I have felt a bit foolish looking at my mug on TV I told Mimi that I was going to respond to one of the questions, "I don't know, I am just excited for Brittany Spears' comback tour." That way I would look like a goof, but at least it would be on my own terms. You know that would have been funny. Mimi said no.

Dec 7, 2008

Another Yummy Quilt



Sometimes I am completely unaware of what people are doing for our family unless I click on the Mia blog. Where are all these talented quilters coming from? THANK YOU EVERYONE! We feel so loved! Whitney I love this quilt.

You can enter here:

stephhhead@yahoo.com

Those crayon rolls are GENIUS!

We're H-O-M-E HOME!


A few days shy of Mia turning five months old, she finally got to come home. I found out I was pregnant over a year ago- A YEAR! Big Sigh.... I am soooo glad to be home.

I pulled up to our house with the kids jumping up and down in the front yard. They ran to the car and I had to do some convincing for them to allow me to pull into the driveway. We had a warm reception with flowers, cards- and WONDERFULLY CLEAN house (thanks RS sisters). My sister-in-law Beebs decorated our house with a big 'welcome home Mia' banner, and balloons galore. The amazing thing about this girl is she had a baby LAST WEEK. Thank you so much!

There has definitely been a learning curve to being home. Between my mom and I we were up last night at 11, 12, 2, 3, 4, and 6. It was a laooooong night. Mia of course sleeps right through all of the drug administering and feeding schedule. During her 3 o'clock feed- her NG tube came out. I could not find the spare that the hospital sent us home with. After looking for a long time I started to stress out because her feed was way overdue. I decided to sanitize her old one and try to shove that one back down. If you have never placed an NG tube down your infants throat- thank your lucky stars! It is torture. Well, Ok- it isn't always torture, but it was last night. The old tube was so flimsy from being in her that we could not get it down to her stomach. To place an NG tube you have to shove a small tube (you've seen in most her pics) down to her stomach through her nose. Simple enough? Last night after shoving and shoving the end came through her mouth twice, out of her other nostril once, and somewhere in her throat, but not into her stomach the last time. After realizing that if I couldn't get this down we would be headed back to the hospital because she has to eat; I decided to check all the bags one more time for our spare. I finally found it in my bed room in a bag that Jensen brought up stairs trying to be helpful. I got the new NG tube down and Mia got her milk.

My sweet mother is experiencing more than her fare share of sadness. I never thought the words "hold her down mom" would ever leave my lips. She is an angel- and the only person on the planet that has prevented me from dropping into the fetal position many times. I know, I know- but these last months have been traumatizing and I am so thankful for the mother/daughter bond we have.

I revamped her ativan/morphine wean so we are not constantly giving her meds. We have so many meds on top of the wean, that we were literally giving meds every two hours.

Today my mom said that we are Lucy and Ethel. It's true! We're running around trying to figure to get a handle on pumps, get her vitals taken, and trying not to use a mop to wipe her face. I mistakenly grabbed a mop cover thinking it was washcloth. Meds are getting pushed through her tube while we are still clamping it- forcing the med out of the other port. Ellie likes to be in the mix so she was the unfortunate one to be covered by prevacid when it came spraying out of the tube. Luckily it wasn't one of her heart meds- that wouldn't have been funny. Now that we are well on our way to day 2 we are feeling much more confident.

I am sure there will be many more adventures a la Mia. The good news is- some of the medications will taper off and we will just have her immuno-suppressant drugs to deal with. That will be NICE. I will get some photo's up soon.

While we were bringing in bags after bags Jensen lifted his hands way above his head and said..."MOM- now we can be a happy family!!!" He waited for that day for so long!

*This pic is of my daddy who happens to be Mia's #1 fan. He finally got to hold her- that was a good day. I have a feeling that she will get whatever she wants from her "papa".

Dec 3, 2008

Subliminal Messages

You know how parents send messages while praying? Not just messages to Father, but to others listening in the room? Like, "Please help Tommy to stop hitting his sister." That kind of thing. Well, Ellie does that for me. Tonight was a great example. I told Ellie to pray for Mom to feel better since she is sick tonight. Part of her prayer went..."Help Mommy to feel better, bless Jensen, Daddy is being really mean to da kids and I'm really sad, bless baby..." She cracks me up.

Mimi is really sick tonight. Thank goodness her mom is in town through December. We may have to convince her to move in permanently. She is staying with Mimi and baby tonight since Mimi was too sick to come home and just went to sleep.

Mia is doing well. We are learning a lot about this next phase of her life. There will be a lot of busy work with all the meds and feeds. For now Mimi and the baby have 3 appointments per week at the hospital to draw lab tests for monitoring. These appointments are 4 to 5 hours each time! I am sure Mimi would welcome some companionship on these visits so let me know if anyone wants to kick it at the hospital with Mimi and I will hook you up. I am sure her mom will go with her when she can through December. Luckily the quantity of meds and visits should taper off as the months roll by, as we have heard. Mimi hasn't given me the official word on visitors, but the doctors have said that really there shouldn't be visitors at our house for a while other than Grandma/Grandpa and a few others. Time will go by quickly as it always does, and Mia will be healthy and strong and growing. We will have to think up some home projects to keep us occupied here at home. Maybe a second tool shed? A zip line from Jensens bedroom to the Play structure? Surround sound installation? :) I am sure Mimi already has my list, so I won't spend time worrying about what to do with myself...haha mimi.

Dec 2, 2008

Mia on the news tonight!

She was sure cute in the interview but a little stingy with the smiles!
Click HERE for the link:
The video should be up soon. In the article is states "Mia" when it should say "Mimi" - oh well.

Dec 1, 2008

Mia Mia Bo Bia Banana....

Today has been CRAZY!!!

Many Happy and not so happy minutes of today.

Happy Minute = Mia slept from 9 - 6 am (until her scheduled blood draw)
Sad Minutes = The lab people came into draw her blood and couldn't get any. I kind of have a reputation with the lab. When we were initially on the floor there were standing orders for the IV team to try and get her labs. I don't know what it is about the lab kids (I say kids because most of them look like they're twelve) that cause such a sick feeling in my stomach. They walk in the door- and I know that they are going to stick her again and again with no success. We have had one lab person draw blood from her... ONE. Anyway, Mia has been a pin cushion today- and it hurts my heart to see her cry so hard. Her blood draws are necessary, I just wish they were a little less cruel. It would be so wonderful if there could be a one poke a day guarantee. It's not that the lab people aren't trained- they are. Mia has had an IV in every inch of her body, and her veins are shot.

Happy Minute = Mia is playing with toys hanging over her crib- it's amazing what a new heart will do. She is changing right before my eyes.

Sad Minute = Mia had a swallow study today because she hasn't been progressing with her oral feeds. The study showed that she aspirates when she swallows. She does have some clean swallows but will occasionally aspirate- which is dangerous to her. She will get re-tested in 6-8 weeks to see if we can re-introduce the bottle. I am totally bummed, she was doing so GREAT! In the beginning of all of this, I just wanted to feed her, now I have to wait longer. I guess if there is one thing I have learned it's patience. This also means that my days of pumping aren't winding down. Pumping is my least favorite thing, but I am determined to stick it out. Mia will be sporting the NG tube for at least another eight weeks. Little set backs are rough, but we can handle anything compared to a few weeks ago. I know she wants to eat so badly, but just needs to heal and get organized- She is my baby hero!

Happy Minute = I passed my quiz for all of the medications. They make sure we are ready to handle home life giving so many meds. The pharmacist guy was a crack up.

Sad Minute = I have to not concentrate on all of the meds because I can already see the side effects.

Happy Minute = She Smiled so much today. She had a huge grin on her face when she was getting an ear nose throat consult. I don't know why she was so happy to see him.

Sad Minute = Her smile was quickly replaced by screaming when he placed a scope down her nose. He looked at her vocal chords and confirmed the suspicion that her chords are swollen. She was intubated for quite some time and it isn't uncommon for kids to struggle with swollen vocal chords. I feel so bad for the little one. I see her smiling at him...she is so trusting and loving. Then she is so confused by having someone gag her with a scope. I don't know how to explain it- but seeing her sweetness only be punished (in mommy eyes) is humbling to the core. I am glad she is a sweetie and won't have memories of these day to day tests.

Happy Minute = We are out of Here on FRIDAY

Sad Minute = No more eating the delicious cafeteria food :D

Happy Minute = Komo 4 news is coming in the morning to interview us.

Sad Minute = I look like I haven't slept in DAYS.