Some days are better than others...

I am continually being strengthened every time I feel like I did, well Monday. Yesterday I received these pictures. I am so grateful to have them. Three weeks ago we had a family photo shoot. There is a foundation of photographers here in Seattle that come to the hospital and take pictures of the "sickies." Mia is the cutest sick baby- and we have some photo's to prove it. This experience has taught me so much about the good in others. Thank you Soulumination! As much as I don't want to do this anymore, I know I must. Mia is my little baby hero and will be a source of strength for me for the rest of my life. She is still here, and is being patient. I can wait for the day her heart comes, as long as she can wait too. For now, I will enjoy these pictures of her in my arms. Oh how I wish I could hug her... I wish I could hug all of the mommies again that had to leave here without their child. We miss you so Lucy, Mathew, and baby Sam.

In Denial

I decided on the way back to the hospital tonight that I am in complete denial. I refuse to admit that we're not ok. But I am admitting... were not ok!! I have tried to hold it together. I know having her intubated gives her heart a rest, but my heart ceases to get any breaks. The doctors don't want me to hold her... she is my baby... and I'm not allowed to hold her? In the beginning (of the intubation) I felt fine with it. Knowing all the good it is doing and the time it is buying. Now I think it is just plain mean. Babies need to be held! It has been over a week since I held her last and my arms are aching to scoop her up. My heart is broken! It's the not knowing that is killing me. The doctors come in, talk about her- maybe change one or two orders- and leave. I feel invisible. Not that they aren't doing a good job, but I want them to know me... know her. Know that I would give anything if one of them would walk in with good news, or at least a big smile on their face. I am suffocating.

My whole life I have felt lucky... things have just gone my way. When people ask me how Mia is doing, I find myself trying to stay upbeat and give them an encouraging response. I do mean what I say... but day after day...it's getting old. She needs a heart- and she has needed one since she was born. It's not her fault- it's not fair. She just wants to be a baby in this world- and is stuck in a wedge with no one to hold her. Things are not going my way now. I'm fine with that. I just need her to be ok, to be home. You can probably sense the desperation in this post. I am desperate... I would do ANYTHING to get her home. I daydream often about a medical breakthrough, something, anything that will get us home. Everyone comments how well I am handling all of this. I don't have a choice. I would rather not handle it please. Today is an especially difficult day because it is the first full day with out my mom. She was allowed to take some personal days to come back and be with me and Mia. She was here for a few weeks, with the hopes that Mia would get her heart and she could take sick leave. Well, it didn't happen, and she had to go back. When she was here I didn't have to own up to my emotions. She took care of me in a way no one else can. Now she is gone and it is Mia and myself back to waiting day after day. Waiting month after month. How much longer? Now I have to be the adult- deal with the pain. When did I grow up? When did I cross the line of being able to handle situations like this? When? I definitely have up and downs. When I posted earlier (pen foot) I was feeling really great. My kids at home are a great distraction to my sorrow. I am sure this is how my blog will go until we are home. Happy post, sad post, happy post, sad post. This just happens to be the sad post. I wish you could all look in her eyes, and see her trying to breathe after she coughs with a breathing tube. It is the most helpless feeling. I have never felt this emotion and apparently I don't have the psychological ability to cope with it. I took a lot of counseling courses in college and none of them prepared me for this. I am suffocating... breathe. This is the most spiritual and devastating experience. Why can't it all be spiritual? Why can't the MOTAB be playing constantly in my brain so I can walk graciously down the ICU hall completely uplifted by my experience? If only life worked that way. Why were we given such raw emotions? It hurts so much!

Please pray for that couple to say yes. Mia has waiting so long, and endured so much. So many of you are praying for her... please continue. I have never prayed as much or more intently in my life. Now that I know how life can be... I will never pray the same again. I will pray with more gratitude...knowing just how blessed I am.

Does anybody have a pen?

Last night after stories and songs I assumed Jensen had fallen asleep. A few hours later John discovered that he was very much awake and having a great time. Jensen enjoys writing in one of many activity books. When the activity book was full, he decided to make up his own activity. Jense pretty much covered his entire foot in ink (even between the toes) . Apparently he isn't very ticklish. Not only was his foot covered in ink, but he wrote his sisters name all the way up his leg. He is really enjoying his new ability to spell certain words. We got a good laugh, had a little talk about where the ink goes, and then let him stay up and watch videos of his baby sis. It was a good night! Oh, and he read his first book without help today. I am so shocked by the progress he is making! I had to keep looking at him to make sure he was mine.

Halloween Part I

This is the fanciest pumpkin patch ever. Maris farms is fabulous. One of my children's many "moms" took them here for a Friday field trip.





My friend didn't mention whether or not Jense insisted on the umbrella, but I am loving the difference between my children. Jensen who is worried about getting wet... IN WASHINGTON.And my daughter who is burring her friend Alice in corn. This is the same corn pit that I lost my ring in last year. That was a close call!! Thanks Rebecca for hauling around extra kids who all picked out a big round pumpkin :-) I am sure getting back to the car was an adventure all it's own.

Happiness is

Happiness is this book!

I received this book in the mail last week. One of my favorite people in the world sent it to me. When we were in college I gave her this book as a gift and we took turns highlighting and writing everything we found in this book that made us happy. The best part of this tradition is looking up the page numbers she marked and reading her hilarious commentary. We lived next door to each other at Arbor Cove in Rexburg ID While attending Ricks College. Tonight as I read through old entries I am reminded just how funny we were. What a happy time that was. We spent hours laughing together. I wish I could flash back to College and laugh until I cried. It has been years since I have had the book, and it came at just the right time. Her friendship is a true source of happiness for me. I learned something about my self while going over my funny entries. 1) my handwriting hasn't changed and is still totally illegible. 2)I am still using the same lingo I did 9 years ago. SO! It really is a fun book- We need more books like this!!

Happiness is my girl Jenn- Our children are a few days apart(anders and ellie) and we have had their marriage arranged since their birth. We literally had a ball at Ricks. We created our own fun and couldn't have been more proud of our shenanigans.




Happiness is Jenn coming here on Halloween to meet Mia!!! well, and visit family members.

Happiness is feeling that although you are supposed to be grown up- there is one person on the planet that will always bring out the fun college student in you!

What is your happiness today?

Some Random Tidbits

I got to come up to be with Mia tonight since she is coming out of another surgery to put in a new central line. She is sleeping soundly and looks really good and comfy. Her poor little cheeks have some sores on them from all the taping and retaping for the intubation tubes, but the nurses seem to be taking extra care of the cheeks now. Here are some random thoughts:

How NOT to make a concrete counter top. I had to learn a few things the hard way. I guess I will wait a bit longer to lift the big one!



Nana, the kids and myself had tons of fun making countertops. Jensen made this picture of our trip to pick up a trailer with a concrete mixer on it. He draws all kinds of things and the details are impressive and often hilarious. Whenever I come across a new one I have him explain the details. He said that this is the truck and trailer. He said that you can see Nana in the background acting really scared since Jensen is riding in the truck bed. I like that he made a trailer hitch with three different ball sizes like the one I used while hauling the trailer. Most of Jensens pictures have been rockets (with Jensen jumping out with a parachute on) and automobiles, mostly trucks and particularly "Mater" the tow truck.


Here we are making Carmel Apples. (Thanks Tammy & Chris). Before we got to make them the kids and I made a big list of items to clean before we could make and eat them. We cleaned for at least an hour straight. I am always amazed at what good workers these kids are. I have previously commented on Jensens religious mail fetching, but he has many other skills. Like for example the fact that he takes the trash out non-stop. I am constantly wheeling the garbage can back to the house since he loves to bring it to the street, any day of the week is fine. The best is that he empties the trash can in the kitchen and takes it out to the big can. AWE-SOME. Jensen and Ellie pick out their own clothes and get themselves dressed. Ellie likes to be a princess and likes Jensen to gather hers, but recently she does it. They have been bathing themselves for years, and they can even hang their own clothes. I have found them unloading the dishwasher, but this can be less than advantageous when dishes are found (or not found) in odd places. If I could now teach them a valuable trade, I could retire.



At any moment during any given day Jensen or Ellie may pounce on my back and commence "elbows." The kids know that I LOVE and need back rubs, and they know that to be effective they must walk on me or use elbows. I figure if I train them now...


The other day I was trying to get some love from Ellie:
Me: Do you love daddy?
Ellie: ya
Me: How much do you love me?
Ellie: I'll tell you "tomowow"
(me and Nana laughing)
Ellie: You funny dad.

And this morning Jensen says to me: "Dad, you broke the volcano and the counter top. Why do you always break stuff?"

Since Mimi has been gone, I have enjoyed the kids snuggles in my bed. I am a snuggler through and through. I have a hard time going to be alone, so it came to a point where I would scoop up a sleeping child and plop him/her next to me for sleepy time. The kids caught on. It seemed like they began to migrate to our room at around 1 or 2 am. One morning about 2 weeks ago Mimi had come home for a day or two. I woke up with Jensen and Ellie draped across me this way and that, and just smiled to myself. I looked over to Mimi, and she was not smiling. She wasn't enjoying Ellie's feet in her face. Mimi doesn't want the kids to learn any bad "habits" while she is gone. She has always appreciated her good sleepers and claims this is sabotage. I said it wouldn't be that difficult to reverse. The next night I sat the kids down and told them there was a new house rule. Everybody sleeps in their own bed. I had a 3 minute conversation, they listened intently, and we dispersed without a further word. At bedtime I reminded them of the new "rule." They haven't come into our room to sleep since. What great kids.

Oh, last one. Some friends had us over for FHE the other night. We made prayer rocks. Each night Jensen puts his head down on his pillow, eventually he sees his prayer rock on he headboard. He then puts it on his pillow and pretends to bump it with his head, thus remembering to say his prayers. Thought that was really cute. He really listens to details.

Gratitude

I got an email from my friend suggesting I write down everything I am grateful for. Well, pertaining to Mia. She must have known that I needed to spend more time thinking about how blessed I am.

here goes:

1)Mia, her little baby self.
2)Her name, today someone asked me my name. "Mimi, I replied." "and you named your daughter Mia?" They thought that was unusual. With a big grin and slow response I said," Yes" In Spanish her name means mine. I have never wanted anything more than I want to bring her home with me.
3)Her spunk. The first week after she was born, we found her holding one of the leads in the air for the nicu nurse. Obviously it attached to her hand by chance, and babies hands are always flailing, but it was her way of showing us her sassiness.
4)Her smell. Babies have the yummy smell- and we like to lather her up in lavender lotion. And one of her many nick names is "mmm tasty" -her initials are MMM.
5)Her ability to beat the odds. Mia's heart is enormous (for her body) both sides are so dilated, but she continues amaze us.
6)Her eyes. She has spent a majority of her time awake staring back at me. Sometimes I feel like if she could talk she would say. "What's up mom... what are we doing today?" Her eyes say so much about her, and I feel her spirit so strongly when she is looking at me.
7)Mia's cry. Every time I hear her cry, my heart melts. I am happy that she is protesting everything that is happening, but I am sad that she has to.
8)Her new heart. I haven't spent a lot of time thinking about her new heart. It makes me so sad, and I feel like until I am faced with that reality I won't have to internalize it. I am so grateful for her new heart that will come. I am grateful for the parents of the baby who will give Mia her new heart. Grateful that they said yes. Grateful for how that little baby will be a part of me, mia, and my family.
9)Her sweet hands that wrap around my finger.
10)Her extreme back arch. Mia loves to be arched back (like Ariel). She would sit like that all day if I would allow it.
11)Her hair. Some of it is still there ;-) she has a cowlick on the left side. I am excited to see it grow in.
12)Mia's sad face. She can make a perfect frown. It's not a pout- her lips can form a true frown and her eyes close. I love it!
13)Her smile- I did see it. That was a tender mercy for sure.
14)Her intense attachment to her binki. She sucks away so vigorously. It is reassuring because some day she will be able to actually get some food and will definitely have the muscles for it.
15)Her way of making my heart happy every time I walk into her cicu room.
16)Her distaste for her the blood pressure cuff and thermometer.
17)Her ability to draw a crowd. Many of her nurses love to come in and check on her because they know her so well.
18)I am grateful for her current heart that is working so hard. It is working over time all the time. Mia's current heart has pretty much been in "cardio" mode since she was born. her heart is working so much that she burns off all the calories we try to give her.
19)I am grateful for the rest of her body that is tolerating all of the medicine.
20) I am grateful I am able to hold her for hours at a time. That she can hear my voice and feel of my love for her.
20)I am grateful she is my daughter- and that Heavenly Father sent her to John and I.

I know many of you feel emotionally attached to little Mia. So many of you have been so involved with her progress. I can't begin to explain my gratitude for everyone who has prayed for sweet Mia. She has become such a source of spirituality for so many. I am grateful for the good she has brought into my life, and the greater knowledge I now have of the atonement. Such a tiny spirit has given me an entire new perspective on life. My life will never be the same.

When it Rains...IT POURS

Well Mia was re-intubated yesterday. Due to her acidosis she is back on the breathing tube. All of Mia's tests for trying to figure out why she always has a fever came back. The doctors still have no idea why she constantly runs a fever. Needless to say, she is well acquainted with the ice packs- poor girl. If it isn't one thing... it's another. The girl amazes me with her will to keep fighting.

Intubation is never good, but it takes the work away from her heart. She doesn't have a problem breathing, but her heart failure requires more and more from her. Putting her back on breathing assistance gives her body a chance re group. she has been such a good sport. I mostly feel bad that she is separated from her pacifier. she LOVES it, and now has to suck on the tube.... sooooo sad!

She has developed a love for her birdie mobile. It plays music, and she wants it on at ALL TIMES. Even if she is asleep and it stops she will stir until someone turns her mobile back on. Good thing she has 24 hr care ;-)

Thank you to everyone who fasted this week- I really appreciate your concern for our little one. We REALLY want to bring her home, and can't wait to be posting pic's of her smiling (which won't happen until she is extubated).

Please keep praying for Mia- she is continually going down a "slippery slope" as the doctors refer to it.

Oh, and my computer decided to quit! Lovely! I mean, life was just going too good! It was high time for something to go wrong ;-).

FINALLY!!

Nope, not a heart... but a smile!! Today little Mia decided to smile. I feel a little sad because it was not I who made her smile. While in daddy's arms she decided to give up her first smile. I guess he looks funnier than me ;-) I was too excited witnessing it, that I didn't have time to get the camera. She really likes daddy pretending to sneeze.

Daddy's next job is to get her to laugh!

Mia is 3 months old

Well the strongest little baby on the planet turned 3 months old. She has been such a trooper the last couple weeks. This last week has been kind of a roller coaster.

Mia continues to spike a fever twice every day. The nurses culture her over and over, but nothing ever turns up positive. The last couple days ID (infections disease) has been running all sorts of labs. Mia had her first CT scan, which came back clean. They did discover however that she has blood clots in her right leg. This was caused by the two different caths she had the first weeks of life.

Three days ago they did an ulrasound on her head to determine if she had a stroke. What??? yes, I know! I pretty much felt the tissue in my own heart ripping when they mentioned it. Mia had been so lifeless the two days prior, and she usually has so much fight in her. I was really concerned because her spunk was gone. They gave her some narcan, and she woke up more after that. Apparently her kidneys are having a difficult time with all of the medications that help sedate her. All of her tests for viruses and infections came back negative. They have no idea why she has this continual fever. I guess sometimes babies with severe heart failure just have fevers. So for now, they are just blaming the failing heart. One of the transplant cardiologists is concerned because if they are missing something and they transplant her, it would be very detrimental due to the overloading of immuno-suppressants given post transplant.

On a lighter note- she now has a cute little squeal she does instead of cry. Because she never feels good (high fevers) she gives us little shout outs to let us know. Before she would strait up scream, now she just has a girly squeal.

I have been trying to get her to smile at me. Developmentally she will be behind, but I can't wait for her to look up at me and smile. She will open her mouth up really wide when I play with her, but I don't consider it a smile. She smiles a lot in her sleep (air in the tummy) but nothing due to all of my antics. A big smile is coming soon I can feel it... just like her heart!!

I have a renewed hope and faith for my little one. Yes, this is the most difficult thing I have ever experienced. However, listening to the general authorities speak this weekend during conference, I cannot deny how much it strengthened me. If you are not LDS, or don't even know what that is. Go HERE and listen to all four sessions of this conference. I promise you won't regret it, and it will inspire you to be a better person.

Mia and I will continue to kick it here until that glorious day will come. Where do you think I will be when I get the news?? I think about this question all too often. Will I be eating? holding her? at home? Where??? What will they say when they tell me... "Mimi, we got a call?" "Mimi, there is an offer?" What? I have created pretty much every scenario in my head, but would love to hear where you think I will be, and how they will break the news to me.

Here are some pics of Little Mees- I haven't posted any pics post head shave. I'm still not over it, but maybe posting the pics will get me one step closer ;-)

Cutest kid EVER

I came home tonight to see the kids and put them to bed. Jensen loves to talk at night after his stories and songs. He loves to stall the inevitable fact that I will leave his room eventually. He definitely got this from me. I always asked my mom for a drink just so I would have that one more minute of company. This was our conversation tonight:

Jensen: Mom, today at co-op there was a girl with three fingers and one finger. (holding up those fingers on each hand)
Me: Oh, really?
Jensen: yeah... why does she only have three fingers and one finger? still holding up those fingers.
Me: Well Heavenly father made every body a little different. Her body formed that way when her mommy was pregnant. Do you know anyone else that doesn't have all of their fingers?
Jensen: Yes, grandpa Vern has fingers like this. (changing the three finger hand to two fingers.)
Me: yep, your right, and we love grandpa Vern so much and Heavenly Father gave him two fingers. Also, your baby sister was born with a perfect body, but her heart doesn't quite work.
Jensen: But why does Heavenly Father want everyone to be different?
Me: He wanted to make us all different so he could love us so much. If everyone was named Jensen and looked like you, I wouldn't know which one was my Jensen. I wouldn't know which one to love so much.
Jensen: oh...(big sigh) Mom, if everyone were just Jensens I would be the one in the back, the one that could love you the most.

It pays to come home from time to time!! This kid is so sweet! Today was a really tough day at the hospital and just having everyday conversations with him help me believe that someday, someday life will be normal again.

Girl Friends

Two of my favorite people stopped by and MADE MY DAY! I had plans to go to dinner with two girls I taught dance with at the Y. When they came to pick me up, they danced their way into the room with costumes on. Their dance was a fabulous routine to "everybody dance now." It was a welcome distraction from my continual desire to pull my hair out :-) One of the nurses held Mia up so she could watch too. I'm not sure that she is able to focus that far away yet, but it was thoughtful. I will upload the video- when I make some room on my hard drive. They were wearing disguises, along with their huge tutu's. No one will ever know who the mystery dancers are. Oh wait, I am posting a picture of them. Ooops!! It was a fabulous night- after a minor parking fiasco and a lot of laughing- I feel slightly human again.

Thanks for the very entertaining cheering up- I needed it!!