"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Tuesday, March 30, 2010

Bummer!

UPDATED AT END OF POST


ORIGINAL POST:

Well folks, Marissa had her first non-pre-existing medical condition related trip to Urgent Care last night (does that make any sense at all?). She was running here in the house and somehow her feet came out from under her and she fell hard on her right arm. She either fell with her wrist bent back or underneath. The x-rays showed she has a couple of "buckle" fractures in her wrist. Her shoulder and elbow did not appear to have any damage to them.

They put a splint on her, gave her Motrin and sent her home with instructions to keep her on Motrin and call the orthopedic doctor this morning. We have an appointment to see him this afternoon around 4:00.

The good news is that she is really acting like her normal self this morning. Even after we got to the clinic last night, she seemed to be in pretty high spirits. There were several other families with small children in the waiting room and Marissa took great pleasure in saying "hi" to all of them, smiling and waving. It was actually really cute. She started out saying "Hi you, Hi you!" then she started saying "Hiya boy, Hiya girl!".

She had a really good night and slept comfortably the whole time, which is more than I can say for myself. But that is a whole other post. I was a little concerned because she loves to sleep on her tummy. Really, it's more like sleeping on her face, but that is a whole other post too. : ) But she slept on her left side with her arm propped up by a teddy bear or on her back the whole night, which I am very pleased about.

I'll try to update everyone once we know what the ortho has to say. Please pray for my girl and her comfort as well as praying that it is not too complicated to fix. Thanks friends!

Being her usual smiley self!


Chillin' with Daddy. He is working from home today. She is actually asking to take the splint off. Surprisingly, she has only asked this a couple of times!

Dancing!

This girl is unstoppable!


Slingin' it!


UPDATE:

So, after waiting 2 1/2 hours, the doc came in, said he looked at the x-rays and told us she would need a cast. It was all over in ten minutes! All that waiting~UGH! He said he was originally going to give her a cast that came half way up her arm, but then he said due to her size, she would need one that goes above the elbow. Otherwise, she might slip out of it, which we definitely do not want! But overall, it was a good experience as they did not even have to set the bone. Woo Hoo! She will get the cast off April 29th.

She was a trooper the whole time. She cried, of course, when they were casting her but she has acted no different than she ever does since leaving the doc's office. See?







Stop taking pictures of me already!

Friday, March 26, 2010

Her Voice

Disclaimer: There are many, many videos in this post. Don't worry, they are all very short. : )

Why is Marissa's voice so important to me? Why does the risk of the reconstructive surgery changing her voice forever weigh so much heavier on me than the increased risk of aspiration, or any other issue, risk, or problem?


When the idea of the trach was first brought up to us, the fact that she would not have a voice was the first thing that popped into my head. It was the issue that made me the saddest about this new life we would all be entering into.



I love baby voices. A baby's cry can bring me to tears myself. Especially life's first cry. No words can even describe what an incredible sound it is.

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I absolutely adore baby babbles. If I am having a bad day, all it takes to put a smile on my face is to hear a baby laugh. I know Rissa is not a baby anymore but she has the best little kid voice I have ever heard.

Starting the night she was born, she was intubated for a week at a time, every other week, until she got her trach. She was never off the vent long enough for her vocal chords to heal so we never really heard her true voice. Any vocalizations we did hear were very quiet, stridorous, and raspy. These sounds were still so precious to me. It took almost a year after she was born for her to tolerate the PMV (purple speaking valve) so she could have her true voice back.

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I can't explain what it is like to watch your baby cry a voiceless cry, other than to say it gives me an awful, aching pit in my stomach. It is pitiful to watch your baby try to use their only means of communication only to be rendered silent. Other trach parents certainly know what I am talking about. Even when she was on the vent, the effect was the same. The first time my mom visited Marissa after she was born, she told me the thing that made her the most emotional was watching her cry that silent cry.

Other trach parents can also relate to learning to listen for new, untraditional sounds to clue us in that our babies need something. Soon after we brought her home, I could be in the other room and immediately tell when Marissa started crying. While there is an absence of a voice, they do make different rattly sounds with their secretions moving back and forth inside the trach tube. And a cry rattle sounds different than any other.

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Here she is the first night she was able to tolerate the PMV. She could only make the tiniest, softest noises but it was music to our ears.

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She was about 9 months old but then she got pneumonia, so she could not tolerate the PMV again until she was about 11 months old.

This video shows her voice getting stronger, about a month after she learned how to tolerate the PMV. She was almost a year old and we could finally hear her laugh!

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This video was shot when she was about 13 months old. She was finally babbling!

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And this one (I have posted before) is one of my favorites. She was about 14 months old and saying her first word. Dadadadadada!!

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I have always taken my voice for granted. I used to think nothing of going to a football game and screaming at the top of my lungs till my voice gave out (sorry Michelle!). Now, even though I still do my fair share of yelling at games, I always reign myself in by thinking of how Marissa has fought all her life to have a voice. It makes me thankful for my own.

I know that if this surgery changes Marissa's sweet voice permanently, I will still be thankful. Thankful that she is able to breathe without a trach. Thankful that she has a voice at all. Thankful that she is here with us at all.

Tuesday, March 23, 2010

Just For Fun...

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Tuesday, March 16, 2010

My Shoes

I had the craziest rush of memories and emotions today, all brought about by gazing at my shoes.
These dirty, worn out, tired, faux crocs.

I bought these shoes the day Marissa was born. I had just been told that I was to be on bed rest until the 19th, when we had scheduled my c-section. I stopped by Payless shoes on the way home from work because I wanted something to shuffle around the hospital in and I didn't have any good slippers. I paid $7.50 for them.

I had always made fun of crocs. I thought they were funny looking. I still do, really. But there was just something about them that made me think they would be good for my hospital stay. Made of soft, squishy rubber - check. Easy to slip on and off - check. Non-slip soles - check.

Little did I know they would be good for so much more.

I was wearing them when my water broke at home. Any other shoes would have been ruined but I was able to wash them off, dry them and wear them again, right away.

They made the countless, endless, mind-numbing hours standing by Marissa's bed in the NICU more bearable, physically anyway.

They took no effort to put on as I hurried out the door the day the NICU called and told us Marissa was in congestive heart failure and needed to be sent to Denver for heart surgery.

They were so light on my feet as I would sit and hold my girl, looking at her with all the tubes and wires that had become so familiar yet so foreign, feeling as though the weight of the world was crashing down on my head.

They carried me silently up and down the hospital hallways to be with my girl more times than I care to count.

As I sat on the back patio swing today, watching Marissa run, jump, and play with such great joy and energy, it all came flooding back. I glanced down at my shoes and, I swear, I went back through every one of the 79 days Marissa spent in the NICU before she came home, in great detail. Don't get me wrong, I often think back and remember those days. Just not like I experienced today.

Eventually, she came up on the patio, climbed up on the swing, sat beside me, and reached for my hand. As we sat there holding hands, I once again thanked God for this little wonder of a girl He has blessed us with. To think of where she was exactly three years ago and to watch her laugh, play, run, and jump now is nothing short of a miracle.

All of this because I was wearing some old, worn out shoes.

Sunday, March 14, 2010

What a Great Day!

Marissa's Birthday was such a special day and we all had a great time. Aside from her being a little naughty by refusing to take a nap, she was an angel and had a constant smile on her face.

After her non-nap, we pulled out her first present: a brand new Radio Flyer tricycle that has a handle on the back for us to push her.

Jeremy worked hard to put it together Friday night after Marissa was in bed:

Marissa, pre-three wheeled surprise...


... and after!



Mmmmmm, pretty dress! Thanks Auntie Chelle and Uncle Nate!


My Pretty Pony and Elmo book from Katie and Kaden. She also got a Sesame Street sticker book from them too (no pics). Thanks guys!

Cruisin' around the neighborhood


Holding hands with Auntie Chelle


Can you tell who is on the cake? Great job Uncle Nate!





Not a happy face, but she finally tolerated it without looking like we were torturing her!


At Red Robin


She got her own basket of fries to lick! She was in heaven!



Saturday, March 13, 2010

Happy 3rd Birthday to Our Girl!

"Breathing in and out's a blessing, can't you see..."



"I'm alive and well."

Happy Birthday, sweet Rissa Roo! Mommy and Daddy love you so much!

Thursday, March 11, 2010

To Clarify

I know my last post made it sound like Marissa's upcoming surgery is a horrible thing. I don't want to mislead you. I think (hope and pray) the end result will be what we have been waiting for for years: getting her trach out for good. The last post (and I'm sure a few more in the future) came from a place of being scared to death of a lot of things this surgery will cause.


First, I am never ok with my baby having surgery. She has had five surgeries so far and it never gets any easier. It is just not cool to have to hand your baby over to someone with a knife and trust that they will do what is necessary to keep her alive, and that they will make her better.

I have never been ok with anesthesia. She does not have any known high risks for problems with anesthesia but I hate it when she has to go under. Anybody ever had minor, outpatient surgery and had to go to a pre-op consultation, only to be told that the riskiest part of the procedure is the anesthesia? That stuff is nothing to take lightly! Marissa has to go under every time she has a bronchoscopy. I have to sign the surgery consent forms. A bronch is considered surgery, even though there is no cutting involved, simply because of the anesthesia.

I am never ok with my baby being in pain while recovering from surgery. She has proven to be a tough cookie through past surgeries but it still breaks this mama's heart to see her in pain. I hate that we have to cause her pain to give her a chance to be trach-free.

I have mentioned previously (and it won't be the last time you hear it!) that two side effects of this kind of surgery are increased risk of aspiration and diminished voice quality. I am not ok with that.

Having this surgery scheduled makes it more real, and that brings on the feeling of fear. Fear that we are making the wrong decision, fear that it won't work and she won't be able to lose the trach, fear that the unthinkable worst will happen.

Having said all that, I really do believe that this is the right thing for us to do and it will result in Marissa losing the trach and being able to move on with her life. I am excited that we are taking this next step! I just need to keep focused on the positive, which anyone who knows me knows is pretty hard for me to do at times. I am not as positive a person as some of you might think.

One last point of clarification, and probably the most important. I do not want to come off as complaining or ungrateful. I have some friends whose kids will have their trachs for life. I am grateful there is a surgery that will give Marissa a chance to get her trach out. I also know she could not be here at all and I am forever grateful for the trach that saved her life and allowed her to come home with us.

Please pray with me that I can let go of my fears, give my burdens of worry and fear up to God and let Him have them for good. Thanks, friends.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

Wednesday, March 10, 2010

June 11

The countdown has begun.


I was just about to wake Marissa up from her nap when I got the call. After I hung up the phone, I went into her room, sat in the rocking chair and just sobbed as I watched her sleep.

We have exactly three months to prepare for Marissa's airway reconstruction surgery which will set so many changes in motion.

I don't know if I am ever going to be fully prepared.

Friday, March 5, 2010

Not Much to Blog About

Not much going on around here.

I guess I could tell you about the constant temper tantrums from an almost three year old every time I ask her to do something or tell her that I am going to do something (change diaper, give medicine, put her shoes on, etc...) Every. Time. But I won't. I'll save that for another post.

I guess I could tell you that it is consistently taking Marissa up to three hours to settle down and go to sleep each night. She tosses, turns, plays with all three lines, tubes, and wires attached to her, throws her bedding on the floor, etc... But I won't. I'll save that for another post.

I should probably tell you that we visited Marissa's ENT on Tuesday. That we discussed surgery. That she said she could do the bronchoscopy and surgery on the same day. That she will decide at that time what particular procedure she will do to reconstruct Marissa's airway to try to get the trach out about two months later. That this will be happening in three short months, in June. That I am cherishing every little noise Marissa makes because I am so afraid this surgery will change her sweet little voice forever and that makes me sad. That I am very scared of the increased risk of aspiration because of her reconstructed airway. That I am waiting for a call from the ENT's office so we can get this surgery scheduled. I could tell you about all this but I can guarantee a post or two totally dedicated to just this subject will be coming as soon as the surgery is on the books and the reality of it all smacks me in the face.

I could probably tell you about how frustrating it is to try to take a decent picture of the girl lately because, every time I pull out the camera, she flips out. Sometimes crying, sometimes yelling, sometimes just being silly and not cooperating. But I won't. I'll let the pictures speak for themselves:



Intentionally not looking at me when I say "look at the camera. Look at the camera, please. Marissa, please look at the camera."

The look I get when she does finally look at me


The looks I get when I ask her to smile

And now, for a little ray of sunshine:

Distracted:
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Boisterous:
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Rambunctious:
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Well, I guess I had a few things to blog about after all!

Wednesday, March 3, 2010

Today is the Day, Take the Pledge!



In the words of my friend, Debbie:

"Have you taken the pledge to stop using the R word yet??? What's holding you back? Do you not realize how offensive it is? People who are deemed medically retarded (yes, that's a real medical term) are still people. To hear that worded as a synonym for stupid is highly offensive to them, their friends and families, and anyone with any sense of decorum. GET RID OF THIS WORD!!!"

Please visit http://www.r-word.org/ to take the pledge to eliminate the derogatory use of the words "retard" and "retarded".

Intellectually disabled people often can not stand up for themselves to tell others how they feel about the use of the R word as a derogatory term. Please stand up for them, now.

No one should ever be made to feel less than they are.