Jan 28, 2009

Lately...


Lately we (Mia and I) have been driving to Seattle like someones life depended on it! ;-) The drive isn't that bad if you minus the traffic, and the cute baby girl's uncanny ability to lose her feeding tube while I am driving on the freeway. I definitely have a new appreciation for commuters. Bless your hearts! One fabulous thing about the long drive is listening to the music of MY CHOICE! Usually the kids dictate what songs they must listen to... Mia doesn't have any strong opinions yet.


Her appointments are going well. She is down a few medications, hallelujah! She still has her feeding tube aka ( the torture tube). She will take some milk by bottle, but only breast milk. She is not interested in the formula. Unfortunately I am not making enough milk for her, so her oral feedings aren't going so hot. Due to her medications and the effects it would have on her system, I cannot take supplements to try and stimulate my supply. Ok, you probably all didn't need to know that. However, I try to keep in mind that one reader that might think, "why doesn't she just take fenugreek, or fennel etc?" So, I threw that in there for you- whoever you are. Moving on.... I want more than anything to have her feeding tube out. She can take a bottle OK, but the formula is so foul. I don't know what to do... I think I may try using all of the supplements for two weeks trying to increase production. I just don't want to backtrack with the progress she has made. Any suggestions?? Why isn't there a tasty formula out there? Last night, I told John it couldn't be that bad. I asked him to try it with me- he gave me a "have you lost your mind?" look. I poured some into a little cup and took a sip. Surely there must of been a mistake at the plant...it was disgusting! Poor baby. I don't know what to do for her feeds. We are getting some feeding therapy, but the bigger problem is what we are actually feeding her.




Lately, Mia is the happiest baby on the planet. She gives out smile after smile. She even smiles at people walking past her(who are not trying to get her attention). I love this kid! We are the luckiest parents to have such a sweet and easy baby. She sleeps like a champ- and when she's not sleeping she spends her time smiling- it's fabulous!




Lately, Mia has discovered her thumbs and knee caps.


Lately we have been addicted to Wii fit. I love Wii Fit! After the kids are in bed John and I spend hours going back and forth trying to beat our top scores. There is a lot of trash talking, and victory dancing going on during our Wii Fit challenges. My favorites are table tilt, the bubble game, and ski jump. I have yet to beat John's score at soccer...he has a perfect score. John isn't able to touch any of my Yoga scores- naturally. According to Wii fit' "Balance isn't my forte." The game is great at handing out insults. I am impressed with the variety of ways it can tell you that you are out of shape, uncoordinated, and have bad posture. Now that we have been playing for awhile the insults have subsided. It's fun to unlock games, and try something just once more- even though your legs are shaking. However, in a lot of ways it isn't motivating AT ALL. When I turned it on a few nights ago- it greeted me with this fabulous news....

Thanks Wii Fit!! Thanks!



ooo... another game that we are also slightly addicted to is DR. MARIO! This is my favorite childhood game. We play this when we just want to sit and play at the same time. This game results in continual wagers for back rub minutes. Unfortunately, even though this is MY game from MY youth. John is much better at it than me. Why??? I have played it so many more times than him! It seems like every time I throw out "double or nothin" it aways backfires. You can also play this with people via the Internet- I have played a few times with one of my friends- who now is addicted as well. John likes to make fun of me for singing the same chants to the music from when I was younger. Thank you creators of the Wii for making our time on "House Arrest" more enjoyable.


Lately, The kids have been up to no good!! They are wondering where all of their friends have gone. Their imagination is growing and growing. Here is their latest adventure. Superman with his Barbie princess in the fort. Ellie really wanted me to put baby in there for her to take care of. If only it were that simple.



Lately, Jense and Elvis have been in creating mode. This is the birthday cake they made while I was trying to feed Mia. I am impressed they fit so many candles into that one tiny cookie. Due to the birthday obsession, Jense knows how to light a match now. We had to give him the "that could burn the house down" talk.

Lately, John and I have been brushing up on our Lindy Hop skills.... it's been a long time! No picture :-)
Lately, we are happy just to be at home

Jan 26, 2009

I don't think we are getting through to him

Mimi and I have spent a lot of time lately trying to figure out how to get through to our children who seem to be immune to the obvious strategies of parenting. here are two of my most recent attemps:

John: Jensen, if I come home from work and see your toys spread out on the floor for me to step on, I am going to have to throw them away.
Jensen: OK dad. (He picks up his Remote Control car from the floor and tosses it in the trash)
John: Doh!

On the way to church today...
John: Jensen, are you going to be a good boy in Sunday School Class today?
Jensen: Yep.
John: What do you think I should do for punishment if you are naughty?
Jensen: You could throw me in the ocean so that the sharks eat me.
John: DOH!

He has out-manuvered me each time! Ellie sticks to her simple stall tactics. "I will in a minute daddy." "I need to go potty first daddy." Things like that.

Jan 25, 2009

Mimi, you rock my world

I have enjoyed using the phrase, "I'm gonna rock your world" or "rock my world" ever since that "In living color" skit back in the day.

Anywho. On Friday I was able to go to a routine appointment with Mimi in order to get a blood draw from Mia to check all of her "levels." (Boy, I am using a lot of "quotation marks.") I just have to say that Mimi (in case any of you out there had any doubts) Mimi you are incredible. I am so glad you are so strong. I had to run out to get some insurance info out of the car, and was able to time it just right so that I missed all of the drama. EVEN SO, as I returned and saw the blood and heard the discription of how things went down, I felt that ton of bricks laying on my chest once again. It is tough seeing a child go through such discomfort. Thanks babe for being the strong one. I know you have to do this a couple times a week, and thanks to those who have gone with her from time to time to give support.

Jan 19, 2009

WHS REUNION

Hey graduates of WHS class of 99- we are looking for YOU! Here's the scoop... our ten year reunion is coming up! Can you believe it? How did that happen? Yes, we are getting older... but the good news is- we are going to have a GREAT reunion!! We need some information from all of you. Please email your current contact info to: http://www.whsclassof99reunion@yahoo.com We need your:
  • name (Maiden and Married)
  • email address (for pre-reunion communication)
  • mailing address (for the actual invitation)
  • phone number (if you want it shared with alumni)

This is the email address we will use to gather information from you up until the reunion. A few things we will be asking you to send in...not yet...but soon.
brief bio of the past ten years with any personal websites
an updated photo of yourself /family
any photo's you have of alumni from k-12 that you want to share How can you help, you ask??? Well...we need to get the word out about the reunion. That is where out little incentive comes in.
Photobucket
Use this button and post it on your personal website/ facebook/myspace etc. Contact everyone you keep in touch with about the whs class of 99 blog and have them email in their information. Just copy the html code and paste it onto your website or attach it to an email.

At the end of May, whoever found the most people (on purpose or not) will attend the reunion for free. What is better than going to your ten year high school reunion? Yep, you said it- going for FREE! So blog away, write on walls, email, and get the word out. Don't forget to have them leave a comment on the WHS blog so we know who gets credit... also it will be fun to see who has been contacted.

* You can use the anonymous option if you don't have an account, but make sure to leave your name.

If you know you are unable to attend the reunion leave a comment so we will know not to call your parents to track you down. Oh YES,... I have a list with their phone numbers. We do still want your information for a reunion booklet that will be handed out at the reunion. The reunion will be the last weekend in July. We will be having a Wasps only night on Friday July 31st and the main reunion with guests will be Saturday Aug 1st. Feel free to email with any questions and someone will get back to you. Now that you have read this, don't forget to email in your info.

If you want a headstart- there are alumni linked to this blog. Oh, and I don't count...so if you haven't heard of this yet, find someone with the blinkie to give credit to.

Jan 10, 2009

6 MONTHS OLD...A true miracle!

This little girly made it! She is a whole half a year old!!!! Some times I feel like she is much older than that! Has it really only been six months? My life has changed so much!! In fact, not many things about my life resemble how it was previous to her. She is my little miracle and I would trade everything I did/was before for her in a heart beat. As time goes I am sure things will settle back down, but for now it's all about this little peanut. Her brother and sister love her so much they don't seem to notice how much time is spent on her. Ellie is still bit traumatized from me being gone for so long, but she is now finally starting to see that mommy comes back after going to the hospital.


Mia has lost pretty much all of her hair... except for the tiny tuft on the top, and little around her face. Her new nickname, (if she didn't have enough already) is Alf. Do you remember Alf??? I LOVED Alf- and Punky Bruster, and Small Wonder... but that is another blog. I guess one of the drugs makes her hair fall out- GREAT! When we made our little stroll through the ICU, I knew people were going to mention that her hair was gone. If you have read this blog for awhile you will know that I cried for hours the day they shaved her head. Well, after all of that heartbreak (and a titch of anger) it is gone anyway... except for her Alf hair. John keeps threatening that he is going to get the clippers out- I know he won't because of the reprecussions from cutting Jensens hair when he was a baby. In summary, sorry I made such a big deal about her hair... I really really thought it would stick around. She sure makes one cute Cupie Doll though.

Hellooooo medicine!!! Can you believe we have to give her these many medications? It's crazy! For a mommy that rarely takes medicine herself, this is a hard pill to swallow!! he he. Luckily, they are slowly tapering off. Hopefully soon she will be completely off of her steroid. Then we can lose those "Steroid Baby cheeks". The neoral (box) is the medication that gives her the "bushy eyebrows" unfortunately that is here to stay... unless we switch her immunosuppressant agents. I wish I knew what med would be best for her in the long run. I have heard arguments on both sides for which drugs to give her...I wish I knew what her body agreed with the most. The med she is on now promotes body hair growth (which I don't love) but it could be worse I guess. The other drug causes diabetes in some kids. There really is no perfect drug. During my last appointment I was questioning the doctors about how soon until there is a homeopathic immunosuppressant... they laughed at me, of course. I have heard these meds described as a wonderful medical breakthrough (yes!- because look at the little wonderful person in my life), and also described as drawing up AIDS in a syringe. I guess both are true. You wipe out the immune system (like AIDS) but life can be continued with a transplanted heart. There is still so much to learn about the medications- I feel like I need to head down the research path just to help discover a med that would enable her to keep her immune system, yet still trick it. When we were getting trained to go home one of the pharmacists told me to wear gloves when I draw up her Neoral. She said, "you wouldn't want any of this to come in contact with your skin because it could absorb into your system... and that would be really bad." HA! I had to laugh at her warning. No worries that I am going to be giving it to my precious baby multiple times a day for the REST OF HER LIFE!! Just send me out the door with that parting advice! It's not safe. I knew how harsh the drugs were from the getgo, but do you have to remind me? ;-) It's the reality of our lives- and it is 100% necessary for her, and I am slowly coming to grips with it. Wouldn't it be wonderful if there was a such a drug?

This is Mia's native heart. I have had these photos for awhile, and decided it would be alright to show you her heart. When I arrived at the pathology lab it had already been preserved and tests had already been done. They pieced her heart back together for me to show me just how big it was. Her heart should have been the size of her fist, this as you can see is much bigger. The section that appears to be missing on the top left is actually still inside Mia. They attached her angel heart to that section of her heart. It's all too incredible!!


The walls of her heart were really thick, and you can see how dilated it was. They also showed me the valves- you can't see them very well, but they are there. If it were not for an entire room full of people in that lab, I would have been sobbing. I held it together- but I wanted everyone in that room to know how proud I was of that little heart. As I held her tiny heart in my hands I thought of all of you and how many people prayed for that little heart... to keep fighting... to keep beating...just a little bit longer. Thank you so much for sustaining this little heart. Thank you for loving her!! Holding my daughters heart in the palm of my hand opened my eyes to how loved I truly am. I will never doubt the tender mercies of the Lord in my life. My friend was holding Mia in her room with a perfect angel heart beating in her chest, and I a hospital length away with her native heart that never had a chance, but tried so hard. For me, that moment was the summit of God's love, and I will draw from this experience for the rest of my life.

Jan 3, 2009

We're Baaaaaack





Mia is doing just fine. She is happily swinging away ( she is addicted to the swing). We are just waiting for her Sodium levels to come back up. I literally thought I knew it all, but the word "SODIUM" didn't exist in the past six months time. I didn't even know they checked sodium levels. I guess I was always preoccupied with the levels that were a problem and paid no attention to the stuff that got swept under the rug like sodium. Well, apparently sodium's feelings were hurt that I didn't take notice- and made sure that I don't forget again.

I'm OK with being admitted back into the hospital if it is for sodium issues. It's just a day or two stay to monitor her while she gets some supplements. Don't tell sodium I'm belittling it's role. Although this isn't my first choice place to have a sleepover, we are happy the level was caught before something bad happened.

The highlight of being back here was being able to see many of her nurses. Last night while being admitted we took a little stroll down through the PICU. Everyone of course was so happy to see her. Candice showed her off to all the ladies. We timed it just perfect because we were walking through during report. We were able to see both day and night shift nurses.

I typed up the blog below a few weeks ago, but forgot to publish it... it sort of applies.



Top Ten reasons you know you’ve been living in a hospital too long


  1. You have seen six different window displays in the family resource center
  2. Everyone asks about your child- even cafeteria staff.
  3. Nurses stop in on their break to see you
  4. You start receiving gifts from the nurses because you’ve been around so long
  5. You get excited when they are showing HSM 3 (there are perks to being at a children’s hospital ;-)
  6. You’ve gone through 2 sets of shampoo and conditioner
  7. You've slept in all of the sleeper rooms except for one.
  8. The unit coordinators know the people who call you and can recognize their voice.
  9. You have consumed your 100th bag of Erin's brand popcorn.
  10. A nurse you had months ago had baby and now is back from maternity leave

So all in all today has been an uneventful day- we pretty much cuddled all day long.
When I did go to the cafeteria I sat at a table that had a newspaper on it. There was a article about Mia. I knew about the one in the News Tribune and Herald, but there was the article in the Seattle Times. It is kind of fun to sit down to eat and have an article about your baby staring up at you. It was the same article from the News Tribune minus the pictures. I took that page of the paper... hope that was OK. It was published yesterday.

Click Here for a link to the article that was in the News Tribune. I have yet to read the one in the Herald. If someone has a copy, save it for me please.

Jan 2, 2009

Low Sodium?

Mimi was at the tail end of Mia's 4 hour hospital checkup this evening when the labs came back and showed Mia's Sodium levels were extremely low. They took another test to make sure and sure enough they were not good. Mimi simply went straight to the cafeteria for some supplies. She was able to successfully crush up Saltine crackers, pretzels and a healthy amount of Salt & Vinegar Chips for a special Salt Medley. She then added a little water and a few bullion cubes and finished by grinding the mixture one final time with her mortar and pestle that she just happened to have in her purse. This became a nice salty paste that the baby was able to eat. Her Sodium levels shot back up and now she is back home with us... Wouldn't that be nice? Mom and baby were actually admitted to the hospital tonight. The docs will give us the scoop in the morning as to what they think is going on. Mia actually looks extremely well. We are not too alarmed, and hope for an early discharge tomorrow. Good luck with that!

On a happy note, My bis sis. Heather had her 5th baby today! A healthy baby boy at 10lbs 5oz. Mom and baby are healthy and I hear baby is very cute. Congratulations guys!