"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

Sunday, May 31, 2009

Marissa's Two Year Homeaversary!!

Marissa has been home with us for two years today.  


I love this day.  We view it as another birthday for her, and even a birthday for our family.  We were not a whole family until she was sleeping under the same roof as us.  It was not until May 31, 2007 that she started being our baby rather than the hospital's.

While this is a happy day for our family, I am feeling very nostalgic today. Please bear with me as I reminisce.  Oh, and you might want to grab a box of tissues.

Many of you reading this blog have shared similar experiences and some of you, thankfully, have not.  

The fog of drugs and emotions in the first few days after she was born that clouded my brain, so as to not allow me to get a true grasp on the reality and the gravity of the situation.  Neonatologists and Geneticists mentioning things like heart defect, stridor, dysmorphic features, kidney problems, ventilators, NG tubes, agenesis of the corpus callosum, syndrome... none of it registering or making any sense to me at all.  Not my baby, she's perfect.  Right?

The utter anguish and flood of stark reality hitting me in the face when I was released from the hospital after my C-Section.  Looking in the back seat and seeing a cold, empty car seat where my sweet Marissa should be.  Watching the hospital fade away in the rear view mirror, knowing that was my girl's home for now.

The endless days driving to the hospital to visit my sweet baby girl, even if I only had a couple of hours to spend with her.  Walking through the doors of the hospital, greeting countless new mommies in wheelchairs with their brand new bundles of joy strapped safely in their car seats, ready for their ride home.  Happy for them, yet sad for us, wondering when our turn would come, or if it would come at all.

Not wanting to see my girl in the condition she was in, yet not wanting to take my eyes off her.   Wanting to be anywhere else in the world, but not wanting to leave her side.  The sleepless nights wondering if she was OK and having a "good" night.  The middle of the night phone calls to the NICU checking in on her. The middle of the night phone calls from the NICU telling us something else had gone wrong.   The roller coaster of emotion... one step forward, ten steps back.  

Needing to leave the room while she was being intubated yet again (I stayed one time and it's not a pretty sight), but wanting to hold her hand, stroke her head and let her know that her mommy was there for her through this traumatic moment.  Knowing she was in the best place possible, that if anyone could save her life and make her better, these people could. Yet wanting to scoop her up and run like crazy, yelling "she's mine, she's mine, get your hands off her, she's mine!!"

Wondering if today is the day... the day she comes home to live with us as a family.  

Wondering if today is the day... the day she goes Home to live with Jesus.

On this day two years ago, this little family of three started writing a new chapter.  One where Daddy and Mommy and Baby finally began the process of learning about each other and what it means to be a family.  Two and a half months late (79 days to be exact), but our time had come.

Today we celebrate.  However, today I also am reminded of others. 

Others, like Faith, who did not come home from the hospital for 14 months (I don't even want to think of how many days that was).  

Others like Emerson, who has lived in a hospital for the greater part of her two and a half years, undergoing two multiple organ transplants and still fighting, showing no signs of being able to come home any time soon.  

And others, like sweet Kayleigh, who spent nearly 11 months in the hospital and never got to come home to her earthly family at all.

However nostalgic I am today, make no mistake, we are celebrating.  We are celebrating Marissa and the miracle that is her life.  We are celebrating being a family.  Thanks for celebrating with us!

Happy Homeaversary Marissa!


Marissa Lynne Cortez
March 13, 2007
5 lbs, 4 oz


May 13, 2007, Mother's Day
2 months old
First time being allowed to hold her since her trach and g-tube were placed
Best Mother's Day gift ever


May 31, 2007
One last NICU pose


"What's the hold up?  Let's go home!!"


May 31, 2007
Finally home!


Our Little Miracle
May 9, 2009
Two years to the day after her trach and g-tube were placed



May 9, 2009
One Happy Family

Friday, May 29, 2009

A Bear on Our Patio? Plus, a Cheer For You All!


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Have a great weekend everbody!!!  

Da na na ni na di na di na, Da ni na ni na di na ..... Whoo!

Wednesday, May 27, 2009

The Terrible, Horrible, No Good, Very Bad Day

This was a couple of weeks ago, but I couldn't resist posting these pictures.  She just was not having a good day.  I think it was one of the days she woke up at an ungodly hour and she was a complete grump... all day long.

We all have days like this, don't we?

Be sure and click on the pictures to enlarge them, so you can see her expressions!


My personal favorite






And on a totally NOT terrible, horrible, no good, very bad note...

I took Marissa to her Pediatrician yesterday for her 2 yr appt (only 2 1/2 months late... don't judge!  :)  She is 27.5 lbs and 34 inches.  This puts her in the 50th percentile for both her weight and height!!  She is right where she needs to be!!!  

This time last year, she wasn't even on the charts for either weight or height.  In fact, she had never been on the charts.  Not even for a minute.  It wasn't until July of last year that she finally made it onto the growth charts.  And even then, she was hanging onto the chart by her little fingernails, in the 5th percentile.

This is huge!   Way to grow Baby Girl!    :)

Saturday, May 23, 2009

OK, So I'm A Drama Queen

First off, I just want to thank you all for your encouragement, support and help after my last post. I so appreciate every one of you. You guys rock!!!!


After a good night's sleep and a little time away from the situation, plus all of your comments, I was able to look at what was going on with Marissa's capping from a different perspective. I realized I was jumping ahead way too far, way too fast. I was expecting her to take off and fly right away, without giving her little wings time to warm up. I have tried so hard in the last two years that we have been on this journey to not go overboard with my hopes and dreams for the future. For the most part, up until a couple of days ago, I have done a pretty good job keeping my imagination in check.


I have to say that timing is a little off in my personal life for this new change right now. I am currently PMS-ing. There. I said it. Not that I like using that as an excuse, but I do know I don't have the best handle on my emotions at the moment. I'm just saying. And I'm not going to apologize if that is TMI either. My blog, so there! :)


I think I just got carried away with my imagination because I am hoping and praying so hard for this next step to go well. No, I don't think she has subglottic stenosis or tracheomalacia. I think she will do just fine if we just give her enough time.


That said, I did want to share a quick video of her crying. When she inhales, you can hear the wheeze/squeak I was talking about. It is very pronounced when she cries. She obviously has a hard time so she takes the cap off herself.

I apologize for having to post so many videos. I have been trying to create this post with only 3 videos since 9:30 am. Apparently, Blogger is having a major problem with any video that is over 55 seconds long. Anyone else having problems with this? Blogger is such a Beeaatch sometimes!!!!
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Here is a quick vid of her laughing and playing with her Daddy. The wheeze/squeak is not as pronounced when she is laughing. You might want to turn your volume up.


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These next two videos are just for grins.

This is the first time she has ever played in the rain. So precious!

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Rissa LOVES LOVES L-O-V-E-S this book. She learned how to say the key words pretty soon after we got it for Christmas from Bubby and Zeyda (thanks guys!). Ain't she adorable when she "reads"??

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Thursday, May 21, 2009

Might Have Spoken Too Soon

UPDATED AT THE BOTTOM OF THE POST ~

Well, unfortunately Marissa is not doing as well with her trach capped as she was a couple of days ago.  I'll try to explain this as best I can without this being too long.

From the second Marissa was born, she had stridor.  This was a squeaking sound when she inhaled.  Through every intubation/extubation it was always there.  The docs finally told us that the stridor was because she had moderate tracheomalacia.  This means that the cartilage in her trachea was not fully developed and was floppy, causing her trachea to collapse.  Ultimately one reason she needed the trach.  Once she got the trach, no more stridor.

Fast forward to Aug. 2008.  When Dr. P did the bronchoscopy, she said Marissa's tracheomalacia had resolved and the only reason she needed the trach at the time was her small lower jaw and chin.  She did not feel comfortable downsizing Marissa's trach at that time but said we could try capping to see how she did.  She did not do well.  We could hear her wheeze like someone would while trying to breathe around a stick in their throat.  She also squeaked, sounding like she did when she had stridor.  However, we never saw any of the classic signs of respiratory distress such as change in color, flaring nostrils, or retractions.  We even put the pulse-ox on her and her O2 sats stayed normal.  We decided she just needed a smaller trach/stick in her throat to breathe around, so we stopped trying to cap her until this could be a possibility.

Fast forward again to the beginning of this year.  We started hearing a small squeak when she would cry, laugh or play real hard.  She has had a leak around her trach for some time, which allows her to breathe out of her mouth and nose even without anything on her trach to assist her.  This is a very good thing, showing us that her tracheomalacia is truly gone.  It was around this time that we noticed her tonsils were very enlarged.  So we thought the squeaking came from the enlarged tonsils when she was breathing around the trach tube.  It made sense that the enlarged tonsils would cause an obstruction and thus the squeaking.  I did not feel the need to tell anyone about the squeak because we were going to solve the problem: we had her tonsils and adenoids removed in April.

It has been a little over a month since her T & A and we really haven't heard the squeak.  So we were very optimistic about the downsizing and capping.  As I said in my previous post, she did very well capping immediately after we downsized her trach.  About an hour and a half later, we started to hear a little wheeze/squeak.  We thought she was just tired and needed a break. Yesterday she did OK but the wheeze/squeak was more prominent.  Today it was even more prominent, even happening when she wasn't capped, but when she cried, laughed, or played hard, just like before her T & A.  Again, no signs of respiratory distress and her sats are normal. She seems to be handling the downsize well but the capping seems to be a problem.  We are going to see how she does over the weekend, maybe not cap as much, and talk to the doc on Monday.

I am trying so hard to not be scared and discouraged right now, but it is so difficult.  Just like many of our fellow special needs parents, Jeremy and I know all too well the game of thinking and hoping something good is going to happen, then getting our hopes up only to have them dashed as we discover a new problem.  Honestly, the trach and all that comes with it has become routine to us now.  It is a pain to constantly deal with all the extras that come with the trach, don't get me wrong, but it is just another part of our lives.  Sad to say, but we are pretty used to it.  

But, our little girl has fought so hard to overcome so much in her short little life and she deserves  a little something good to happen.  She deserves to know what it is like to breathe without a hole in her neck and a tube in her throat.  She deserves to understand what fully tasting something is like.  She deserves to eat, to know what ice cream and cake are at her birthday, to know what McDonald's fries and burgers and McNuggets taste like.   She deserves to learn how to swim and know what it's like to play in a sandbox or on a beach.  I am so scared that we won't be able to give her these things for a long time.  I am so scared that we have somehow missed something like subglottic stenosis and that is what is causing her latest issues.  I am so scared that her tracheomalacia is not really resolved after all.

Please pray with me that the issue she is having with capping is easily overcome.  Please pray that it is just the fact that she needs to get used to wearing the cap.  

Please just pray.

Thanks.
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CLARIFICATION:

Any one of my family members can tell you that I am a drama queen.  I typed this out last night after a long hard day because I just needed to get it off my mind.  My drama queen brain tends to come up with impossible worst case scenarios when things don't look like they are going my way.

Having said that, yes Hope and Jenna, Dr. P would have seen something like subglottic stenosis or tracheomalacia during a bronch.  My crazy brain tells me that nothing is impossible in medicine and maybe, just maybe she missed it.  My brain is my worst enemy.  I need to not listen to it a lot of the time.  It is evil.  :)  

Jenna, Marissa's trach right now is the next to the smallest size.  I think the school of thought is that we need to have that "emergency back-up next size down" trach just in case the 3.0 comes out and won't go back in.  

Jen, capping with the 3.5 Neo did not go well either.  She is, now with the 3.0 Neo, starting to sound like she did with the 3.5.  Yes, it is incredibly small and that's what scares me.  If she is having this much trouble with the next to smallest size, is she ready for this next step?  If not, why not?  I will be trying to tap the minds of the parents on the trach board to get their take on this situation. And no, your comment was not annoying, you made me laugh sista!!  Just what I needed this morning.

Bottom line, I guess I also need to ask for prayers for myself.  To not go overboard coming up with all the disastrous worse case scenarios.  To just take a deep breath, like Hope knows so well how to do.  ;)  I am just so bad about pinning all my hopes on one thing  and when it looks like it is not going well, I just freak out.  Thanks for some perspective guys!

This blogging thing really is great free therapy!  Group therapy even!  :)

Oh, and Hope, I LOVE your new profile pic.   Gorgeous!!

Tuesday, May 19, 2009

Downsized and Capped You Ask??

Why yes, of course!!! See for yourselves:

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We went to Dr. P's office this morning and downsized Marissa's trach. For those in the know, she used to have a Bivona 3.5 Neo and now she has a Bivona 3.0 Neo. She was a very good girl for the change and only cried a little. Afterward, we put the cap on her trach and noticed an immediate difference!! She no longer wheezed like she did before. Awesome!!

She now has been capped for about an hour and a half. We are noticing that she is beginning to wheeze slightly and works to breathe just a little harder than normal. We are attributing this to the fact that her airway is still trying to adjust to the change in the trach size and the capping. Remember, she still has to breathe around the shaft of the trach in her throat which, even though it is smaller, is still an obstruction. It is also nap time and I think she is just physically worn out from the activity. We are remaining positive that, if we just give her plenty of time to adjust to the change, she will do well. After all, it took her a while to tolerate wearing the PMV all day and now she wears it like a champ! We just have to work her into this slowly.

We are SO excited for this new chapter in our lives!

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On a different note, please keep my friend Michelle and her daughter Lillian in your prayers. Lillian is having palate repair surgery today. For her, this is a step toward decannulation. Please pray with me that the surgery goes well, that she heals quickly with as little pain as possible and can start on the decan road shortly.

Thanks.

Friday, May 15, 2009

Littlest Hero Photo Shoot with Tamara (many pics!)

Our favorites:
































Our best attempt at "The Train Wreck"


Abby & Marissa

Thanks again Tamara. You are an angel and we had such a fun time with you!!!!

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Side note:

We went to Marissa's urologist yesterday for a follow-up on her kidney surgery from January. She first had an ultrasound on her kidneys, then we went to discuss the results with Dr. B.  

Dr. B said that the swelling has gone down significantly and he is discontinuing her prophylactic antibiotics.  We need to go see him for another follow-up in a year.  

Bottom line... her kidney surgery was a success!!!  

Praise the Lord!!!!!

Thursday, May 14, 2009

This Might Be OK While She's A Neck Breather...

but ...
she might find it quite a lot harder to breathe laying this way...

once she has to do so through her mouth and nose!


But she sure is cute, ain't she?