Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Sunday, October 31, 2010

10/28, Port removal, MBCH

Fierce and Fiesty

So, it was a tough week, I'm not going to lie.  Our appointment with the eye doctor was almost too big for me to digest on Thursday.  I was sad, and I slept a ton when I got home, and I was sappy, and emotional, and yada was pathetic.  I think it's ok to mourn for your child.  There is a time for sadness.  That time has passed.

And then, I had a mom suggest vision therapy.  Her son has done the same and she's had incredible results from, from eyes not responding to light, to tracking objects, incredible.  It was just the thing I needed to hear, at the most perfect moment. 

That evening, as I was hanging out with a friend, she mentioned that she was talking about me to one of Joel's intensivists.  Using the words, "drill sergent," and "drive" and "modivated"....using words that didn't come close to describing me this past week.  It took me by the wrist. 

I drove home from Tacoma that night in deep thought.  Remembering the person I once was, pondering, "Did those words describe me now, or then?"  Only now, after all of the trials Adam and I have gone through, after the spiritual exfoliating, after the loss of our baby, after fighting for our marriage and fighting for our son.....only now do I feel strong.  Only now do I realize what these stepping stones were all about.  God took my rubble, and he made it into something beautiful.

There is something to be said about the person you are inside when you're walking next to Jesus.  I've never felt more true to myself, more power in my step, than I have at this time in my life.  All of the glory to Him, I am proud to get to be Joel's mommy.  It takes guts to do this.  It takes tears, and tough skin, and trusting in God's promises.  I am so thankful in this moment right now.  God helped me become a strong woman, and that's what I'm going to be.  Doctors can tell me what they will, and I'll listen.  But my hope is not in them.  I am fierce and fiesty, and I need to fight for my son's healing.

Thursday, October 28, 2010

Curve Ball.

We went to Joel's first eye appointment today expecting patches.  If you've been around Joel long, it's obvious that he has difficulty with his eyes from time to time.  He tracks well, but every once in a while one of his eyes wanders (happens to both eyes.)  This has happened since we were in Tacoma.  There were too many variables at the time- being sedated and heavily medicated for 10 weeks, and some babies have poor eye muscle control anyway.  Connor did when he was a few weeks old and it scared the crap out of me.

So here we are, Joel's seven months old, and still having these problems.  We were referred to the opthamologist for what we thought would end up in eye patches to gain muscle control.  We left with a different word:  Command Center.  Not what I wanted or expected.  After the exam, the eye doc concluded that Joel's eye problem isn't a muscle issue.  It's a "command center" issue. 

We knew after Joel's brain bleeds/stroke/seizures/hydrocephalus that there was a possibility of side effects showing up later.  I just didn't think this was one of them.  Here's the problem with this.  If an adult crosses their eyes, they see double.  Kids don't.  If one of their eyes isn't seeing the correct picture, the brain tells that eye to stop working altogether.

Luckily, our next appointment today was with Neuro, and Korol, (going by what we told her, not by physician notes) disagreed with what Dr. Shelly thought.  She plans to talk to him and get back to us on this.  I'm really hoping she's right.

Please pray for this, and for our family.  It's hard to have stress enter our world and not have the other children affected somehow.  They are our little sponges, and the last thing I want to happen is for them to resent Joel for the way "his news" changes the atmosphere. 

For now, we do have patches, though I'm still a little confused as to what good they will do.  He's supposed to wear them for 2 hours a day, alternating eyes daily.  I'm going to stay as consistent as possible on making sure he gets the visual exercise he needs to progress if it's something that will help him.

I'm reminded of the story of Jesus bringing Lazarus back from the dead.  He delayed healing him on purpose for the greater good, even though He loved Lazarus dearly.  Funny, just after Pastor Kyle preached this sermon a few weeks ago, I wrote down the scripture notes and passed them on to a friend who I thought needed them.  I found myself going through my sent folder, reading them back outloud, because tonight I needed to hear them too.  I'm frustrated.  And worried, even though I know I shouldn't be.  I want this to be over with....for him to get better now.  This has been a very long test, God.  I want my normal back, and I want to bring my baby with me. 

Monday, October 18, 2010

One,, two....No, THREE!!!

It has been a big, tough week for the poor little munchkin.  Joel is at high-risk for just about everything, one of which being bacteria.  This was his third time fighting off staff & pseudemonas (I don't know if I spelled that right...I'm too tired to look it up,) and this time added moraxella catarrhalis.  I haven't heard of that one yet, but I've been told it can cause ear infections.  We caught it early, way early, and this has actually been the quickest turnover during his antibiotics.  So, fighting off three bacteria was tough....but that's not all...

He also cut not one, not two, but THREE teeth in two days!  Should I be surprised that my son does everything with a bang?  I guess not.  At least he's getting everything out of the way at once.  It actually looks like he might get a fourth tooth by the end of this week.  It makes me feel a little more comfortable knowing that his fever might have been from teething and not from the bacteria.  Either way, he's a stud.  What a week for a little dude.  7 months old and 5 chompers.  :)

Please think and pray for J-man as he goes in for his portacath removal on Thursday.  It's supposed to be very minor, but it is sedated, so it might wear him down quite a bit.  Pray for health during our cold and flu's our first one, and unfortunately, having a plastic tube down his throat makes the preventable- inevitable.   

Again, thanks so much for all of your encouragement this past couple of weeks.  We've really needed to be built up, and you've shown us what friendships are all about.  We appreciate you.  XO

Wednesday, October 13, 2010

School time blues

You know that saying, "Be nice to everyone you meet, because they may be facing a battle of their own."?  That might not be the exact wording, but you get the idea.  This is my battle.  For the past six months, I've been struggling with something, half the time feeling selfish for even feeling the way I do. 

When Joel was in the hospital, I continued "nesting."  I didn't have a baby at home, and there wasn't a lot I could do for him.  He couldn't get in a swing, he couldn't be swaddled in cute clothes.  When I left the hospital, I went to babies r us atleast once a week.  I browsed through aisles aimlessly looking for something that would "help" my child...(nothing did, but I continued to look.....I know, it makes no sense...I guess it was comforting.)  Would you like to know who shops at Babies R Us???  Pregnant women and women with new babies.  Horrible idea to shop there when you have a baby in the hospital.  I noticed them, with the realization that no one knew what kind of battle I was facing.  How badly I would have loved to cart my beautiful baby around in the store.....I thought it would have ended when we left Mary Bridge.  It hasn't.

I pick up Connor at 2:30pm daily.  There are a group of moms that stand outside holding their infants while they wait for the bell to ring.  I walk by these smiley, friendly women every single day; none of them knowing that I too, have a baby.  When I get into a conversation with people I don't know, I avoid the "what age are your children" talk.  One word of Joel and it's a giant ordeal. 

This might sound petty.  My child is alive, I should be happy that I even have him here....but I continue to hear this "it's not fair" chant in the back of my head.  It's not.  It's not fair that no one knows that I have a perfect beautiful testimony of God's love back at home.  I spent 9 months trying to figure out how to juggle a toddler & an infant at the grocery store, and now, I'd give anything to. 

Joel's new trick. He makes sound :)

FLU SEASON. Please read.

Hello all.

After October 31st, 2010, we are asking that our family and friends wanting to come & visit us (in our home), have the flu shot by that day.  We are healthy people that normally can fight the flu on our own, and for the most part I don't like the idea of immunizing for this particular sickness.  In our current situation, it's absolutely necessary, and we can't take the chance of Joel getting it.  It would be dangerous for him, and his doctors have STRONGLY advised that people with continued contact with him be immunized against it during flu/cold season. 

Know that we completely understand if you decline/object to getting the vaccine.  We love you anyway!  Immunizations are a touchy subject, and if your beliefs are against them, we are ok with that....but you have to stay away from the house for this season. :)  There are other options for us to communicate...I'll never turn down a trip to starbucks! 

Thank you so much for your cooperation on this.  One love-

Monday, October 11, 2010

A New Existance

There was a time when I was just a mom.  My babies were just babies.  I loved leaning on my fellow mommies about their struggles with feeding picky toddlers, potty training, temper tantrums...  it's nice to have the support and conversation of those who are going through similiar trials in life. 

I am still that mom.  But now I run with two crowds.  The mommies, and the "other" mommies.  My new group is the same in some dimensions, but with different's all g-tube this, and ventricular that.... also, many of the new mommies I talk with I don't usually interact with in person.  I've met them off the internet, or through a support group, or through the ICU.  We are a resource and support to each other, and every single one of them I consider to be dear to my heart, as their very special babies are.

There are two moms I've been following and  especially praying for in the last month.  Kirsten and Jill are two very brave mommies with CHD babies, and both of their sons passed away last week due to their congenital heart defects.  I can only cry for these two women and their familes.  There is no "mommy trick" to fix their problems that they are facing.  There is something excrutiating about the term 24-inch casket

I wasn't prepared for this.  You expect a defect.  And a fix.  That's it.  Heidi came to visit me while we were staying in the PICU.  I didn't get the chance to meet her precious son, Cutler.  Joel was admitted three months after Cutler passed away.  Still, she is one of my connections through nurse Jodi, and looking at pictures of their family minus one gets my throat lumpy.  I don't know what else to say, or how to say it.  I'm just sad.  CHD is a real thing.  A big thing.  And one in eight thousand only seems rare until you're one of them.  There are babies born every day with a congenital heart defect.  I am learning that some of them don't make it.  And it just about kills me.  Please take a moment today to pray for these mommies, and daddies, and siblings of baby Joshua and baby Ewan.  And for Heidi and her husband & kids as well....9 months have passed but I know they are deeply missing their baby too.  I love you Heidi.

Friday, October 1, 2010

Please pray for this baby.

Praying for Baby Ewan Button

The news we've been waiting for...

Last dose given 8 a.m. 10/1/10
We got the final word today.  Lovenox has been discontinued!  No more blood thinners, no more shots, no more ports!!!!!  Joel's portacath is scheduled to come out October 22nd, 2010.  SO HAPPY!