Life Starts Now.

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

Wednesday, December 29, 2010

I don't even know what to say.

It's the holiday season.  And amidst the stress, and the gift buying and wrapping, planning,...all of that, there is the simple fact that I am still among a new crowd of people.  A crowd of people that may or may not still have their miracle babies with them this holiday season.  Some babies never make it to their first Christmas.  It might be a bit of post partum, or me just being emotional as I usually am, but it literally takes me by the throat when I address how this Christmas makes me feel.  While I hear of my normal friends talking about Christmas programs, or what they "got for christmas," I'm also reading of my internet/blog/heart mommy friends....friends who are learning to cope with one less stocking on the mantle.  Jesus saved my son.  We got to spend Christmas with all of our children at home.  Together.  I am blessed beyond measure.


Thursday, December 23, 2010

Control Freak

I guess it was inevitable that this would happen.  Logan arrived for Christmas visit with a cold...me being the one with an overflowing plate, got sick.

Joel had his 3 month follow up with Cardiology this morning and, feeling like the walking dead, was forced to hand over an appointment to Adam.  I've never missed one of his appointments.....well, I've never missed one of his ANYTHING.  And it was torture.  Laying in bed while someone else was discussing my son's heart was absolute torture, but we all got through it.  And after they all got home, I realized that it was just as torturous for Adam to try and answer questions at one of Joel's dr. appointments. :)

The appointment went well!  His echo & EKG were both great.  He screamed his way through the ultrasound as usual, but other than that, they said everything was pretty normal.  We have him on a Holter monitor for the next 24 hours to record any abnormalities.  The arrythmias Joel has been having didn't show up in the tests, but that may be because of his increased sotalol dose. 

I guess that's all I can tell you.  I don't like being the one hearing second hand information.  It just seems like with a kid like Joel, there has to be at least 1 person who is there for everything.  One person who knows all of it.  That person needs to be me.....so I better get well soon.  Ni-nite!

Monday, December 20, 2010

Feedin' Birds




I read an essay about a mother who locked her kids out of the house during "snow-week" after being cooped-up in the house for 3 days straight.  It sounds abusive and terrible, but it was absolutely hilarious...if you  happen to read any of David Sedaris' work, this story is called "snow day."

Please note that I LOVE MY CHILDREN with every speck of my human heart.  Every speck.  And it's not snowing here, but I do live in Washington, and it rains most of the fall, winter, and spring.  I'm used to it, and most of the things I love to do are indoors anyway.

BUT....If I had the opportunity to have no kids or nurses for ONE DAY.  Just one day, this is what I would do:

1) Wake up at 8.  This is sleeping in for me.  Have a latte (we don't own an espresso machine...sigh, but IF I DID...) and a cream cheese danish for breakfast, and read my bible.  In peace.  No rush, no report to get, no kids to feed, no "Honey, could you...?"  Just silence, and the smell of good coffee, with the perfect view out my master bedroom window. 

2) Turn on my new Norah Jones cd and listen to all of the words without being interrupted.  In the bathtub.  ALONE in the bathtub. 

3)  Get back in bed and watch a movie in my jammies, and knit. 

4)  Go downstairs for lunch, not have to see anyone, get into the fridge and see that the refrigerator is pre-stocked for me to make a turkey sandwich just the way I like it.  Iced tea too.  Go back upstairs, restart my movie marathon, and eat my lunch in bed.

5)  Call an old friend.

6)  Take a nap without having to think about 'how many more minutes I have until I have to wake up.'

7) Paint my nails.

8)  Browse through a stationary store.

I know, it's pretty boring.  But I can't remember the last time I was alone for an entire day...(the hospital doesn't count.  I was bordering a mental breakdown...) I guess I'm just a little "cooped up," and the boys have been playing wii for two straight days, and everytime we seem to get out of the house I end up responsible for everyone getting out the door, and snacks, and packing extra underwear...and Joel...

Mommy needs a mommy-break.  In her own home. :)

Saturday, December 18, 2010

Sermon Notes

I texted a friend this excerpt from a sermon I took notes on.  She couldn't forgive her mother for all the awful things she'd done to her as a child.

You change your mind and it begins to change your heart.  Keep changing your mind and God will change your heart.

Once again, my words have bitten me in the butt.  I know I need to keep my head up.  I know Joel is literally jumping milestones right now.  I know where we've been.  And I'm trying to change my attitude.  Trying to change my heart.

Tuesday, December 14, 2010

video

You may have seen the first video of Joel on his Passy-Muir.  It's a one-way valve, letting air come in through the trach, but only out the mouth.  He HATED it with a passion at first, but we've come a long way since then.  Here's a newer passy trial.

This is one of Joel's favorite things...SPINNING in his exersaucer :)


video

Well, hello there...

I'm up, doing my 6am routine.  I slept horrible last night, but I'm downing my cowboy coffee and trying not to be crabby....still, it's a little early to tell, the kids are still in bed... :)

I'm having a really hard time with Ricker's timeline.  I'll wait if God wants me to, but it might take me a while to get my attitude in check.  I know there are so many parents that never get to bring their babies home from the hospital.  Parents that have chronically ill children.  I should be so lucky to have a child with a temporary condition.....but the truth is, it's hard in my situation too.  We've been home for six months now.  6 months of people in our home 16 hours a day.  6 months of ordering supplies, 6 months of inhome therapies and appointments, 6 months of not being able to leave my house between the hours of 4-7pm....and we're only half way through.  "The only way out is through."  Ahhh, I love that quote.

To add to my frustrations, I've been having these dreams.....

Wonderful Dream #1:  *We're sitting in Ricker's office.  RN Denise and RN La Donna are with me.  We're taking out Joel's trach.  One of them is videotaping, and we're so happy that we're all laughing and crying.  And when they take out his trach, he cries, the most beautiful cry I've ever heard.  Different from the passy-muir sound....and I look.....and I can see the back of his neck, for the very first time.*  I'm crying right now thinking about it.....and I'm not sure if it's because I'm happy we'll get to that moment or sad that I'm forced to wait.

Wonderful Dream #2:  *More of a daydream....I sit in my room, looking over at the wall, thinking of how we'll incorporate a crib into our furniture placement.  What wall hangings from his room we'll bring in to ours.  How I'll (FINALLY) get to decorate our family room....what kind of a firepit ritual we'll do with a few of his medical supplies.  How I'll be able to check on him sleeping, just two feet away from me. 

Wonderful Dream #3:  This one's a daydream too.  Walking downstairs for a drink in my underwear.

Friday, December 10, 2010

So, we're off the vent for naps.  It's great news, and I can't for the life of me even pretend to be excited.  Dr. Ricker told me he won't take out Joel's trach until summer.  I had my heart set on March.

I feel like a piece of shit.  I should be happy.  My son's progressing so well.  He's come miles from where he was just 2 months ago.  This week he rolled over twice and ate his food....all of his food without puking.  Big deal for a kid who's had a tube in his throat his entire life.  But the truth is, I'm gasping for air at the thought that we'll have nursing for another 6 months.  That my family room will be my son's bedroom.  That I can't take a nap with him, or go to Chicago in April, or take him to the store by myself without having to have another person in the car.  THAT I CAN'T LEAVE THE HOUSE FOR ANOTHER 6 MONTHS WITHOUT AN EMERGENCY BAG.

It's like when you're running in a race, and you think you can't possibly make it to the finish line, you tell yourself these little 'mental motivations,' like, "just make it to the tree"  "just make it around that corner"  "you're almost there..."  Ok, that's what I've been telling myself for the past 9 months.

I'm feeling so selfish.  I can't see past the tip of my nose.  When is this going to get easier?

Tuesday, December 7, 2010

Another New Normal


Since coming home, Mia thinks she's really cute and funny to morph into "Baby Mia."  She grabs a binkie (she's never used a binkie) and a blanket, and gets into Joel's things.  I don't think it's necessarily a regression thing as much as a role playing, but either way, we humor her, and the nurses totally egg it on.  It's so funny.

Last night, she crawled into Joel's crib for the first time since it left her room.  She puts a binkie in her mouth, wraps a blanket around her, grabs an HME (Heat and Moisture Exchange) and says, "I need this for my suction."

It just dawned on me that Joel is the only baby she's ever been around. :)

Jo-Jo loves Robey



Sunday, December 5, 2010

:)

Tis the season to be thankful.

I am overwhelmed with emotion tonight as I sit here and think of all I have to be thankful for.  It's been an amazing year.  I've met so many new people.  I've learned so many new things.  I've lived and I've loved to the fullest. 

I can't truly put into words how very thankful and grateful I am for each and every one of you. 

For all of the workers:  Thank you for doing your very best to save my son's life.  You have not only taken care of my baby, but you've taken care of us as a family.  Thank you for going above and beyond.  For calling in to check on Joel on your day off.  For treating my son with love and compassion, the way you would like your child to be treated.  It has been a very fragile 8 1/2 months for us, and somehow you all knew what we needed to hear, when we needed to hear it.  I love you.

For my friends and family:  I have taken far more than I've given the past year.  You've watched our kids when we were in the hospital.  You've brought over food, or gifts, or sent up care packages, visited me when I needed another fighting spirit in my corner.  YOU'VE PRAYED.  Each and everytime I posted something asking for prayer or support, I was flooded with encouragement.  And I thank you.  Even when I couldn't reply back to messages, or return calls or texts....(which I still can't do very well,) please understand that I read every word.  It means far more to me than I can even say.  I hope someday I can repay you.

For my savior:  Thank you.  Thank you for saving my son.  Thank you for turning such a horrible situation into one that I could absorb faith and knowledge from.  For the toolbox I needed to maintain a healthy marriage.  I've learned so much about your faithfulness and love for your children.  You were with us the whole time, you never abandoned us.  I love you.

Friday, December 3, 2010

Hope.

Our first opinion on Joel's eyes was just that.  An opinion.  He said that Joel's eye or eyes would eventually not work well, we could do surgery, but that may not help either, and it was neurological, which the neurologist disagreed....  It was frustrating.  And it made me feel up in a corner.  What good does it do for the patient if you have two doctors disagreeing with each other, but no one is actively trying to solve the problem but the parent...who knows nothing about the eye or the brain?

I was referred to Dr. Baxtrom by a mommy friend.  Her son goes there for vision therapy and has had miraculous results.  I had/have no doubt that my son needs all therapies.  He was sedated and on heavy narcotics for the first 3 months of his life.  If he needs major physical therapy and occupational therapy, why wouldn't he need help with his eyes as well? 
Baxtrom's opinion of Joel's eyes was much different than the first.  He discontinued the eye patches.  After a straight month of diligent patching, we'd seen zero improvement.  He said that he's actually seen negative progress after patching in a case like Joel's.  It wasn't that one eye was turning (strabismus, which is what the first doc said it was.)  The problem with Joel's eyes is that they aren't working together.  If an object appears in his right periferal vision, his left eye has a tendency to turn in anyway, and so his left eye is taking "lead" in a circumstance where the right eye should be turning outward to view the object, and vice-versa.  Does that make sense?
There's no reason to patch either eye.  They work fine on their own.  It's working together that they need help on, which can be done.  Did you hear me???  IT CAN BE DONE.  Dr. Baxtrom said he has every reason to believe Joel has the potential to have "normal" eyes.  No surgery.  Just special glasses, and extra practice with lateral tracking. 
So he's getting glasses :)  Green rubber glasses.  They'll get here in a couple of weeks, and the neat thing about them is that the inside of the lenses, (around the bridge of the nose) is hazy.  So, in the circumstance I mentioned earlier, when his left eye wants to take lead, it won't be able to, because it won't be able to see through the haze.  The right eye will be forced to do it's job. 

So there it is.  There's the news.  It was a great afternoon in Federal Way, and the clinic was by the mall....which we stopped and did a little shopping.  Early enough that there were no shoppers, we got to take Joel to a mall, safely, without the panic that someone would cough on him, or not be able to find a plug in with the holiday crowds.  And he saw Santa :)  I'll post a pic soon of that.  It was classic.

Saturday, November 20, 2010

New stuff

During this time of such crazy mommy emotions, I've neglected to mention all of the amazing things happening for J-O-E-L!!! 

We went for an appointment on Veteran's Day, and Dr. Ricker was so pleased with Joel's progress off the ventilator that he made new orders for Joel to be off the vent during all waking hours!  We are so pleased with this news.  It allows us to have more freedom, and our schedule has cleared up too.  J can come in the kitchen with me when I'm cooking dinner.  He can come in the bathroom with me when I'm putting on my make-up....normal.  Key word is normal.  Even though the winter "scare" has gotten me a little undertow, having a cordless baby is absolutely wonderful.  I'm so proud of him.  He's been on these new orders for 9 days now, and he's handling it great!

We got connected to a feeding team out of Mary Bridge, a combination of J's G.I. doc, our dietician, an occupational therapist, Diana, who we worked with as an inpatient, and Jennifer Sarver, (who we LOVE!!!,) our speech therapist.  We've been working so hard at home on Joel's feeding trials, and they're a total pain in the butt....so much preparation for 30 seconds of show, followed by barfing, or gagging, and that pretty much sums it up.  I've been eating cold dinners for a solid month, (as us typical mommies do,) and although there are nights when I want to just skip it, we don't.  I've never been so proud as I was at that appointment.  Joel has a new habit of hating his therapies.  We have 4 in-home therapies a week, and the moment those women walk in the door, Joel rolls over, telling us, "Nope, I'm not doing work today." 
At the feeding appointment, Joel did a solid hour of work.  It was awesome!!!  They introduced new instruments for us to use, switching from a spoon to a "dip," and considering the amount of food he was actually taking by mouth, he'll be getting more from dipping.  Our hard work has payed off.

Saturday, November 13, 2010

Today.

I am having more and more days where I am happy.  Happy about my wonderfully blessed role as a mommy, happy with my marriage, happy, happy, happy....

and then there are nights like tonight, when Joel was throwing a fit, and desatting, and the neb and the suction were getting caught on the crib bar, and the feeding stand was in the way of the vent stand, and the vent circuit got condensation inside it and beeped continuously.....I just want to pick up my baby.  I screamed, "I HATE CORDS!  I HATE CORDS!," like a child would.  Seriously.  It felt great temporarily, but I just want to cry tonight.

People ask how Joel is doing, how we are doing, and I always answer the same.  He's great.  We're great.  Home is great.  That is true.  We are great.  Home is great.  Joel is great.  But the fact is that marriage is hard with extra stress in it.  The mommy job is neverending as it is, and it's worse when you have someone in your home for 16 hours a day notice every parenting screw-up you make.  It's tough to have breast-feeding mommies as friends, when I so desperately wanted to nurse my last baby and wasn't able to.  It's frustrating to have people ask me in public how many children I have, and then get a confused look when I tell them that we have an infant, but he's home with a nurse.

This is a tough time.  We are going through a tough time.  I have so many people around me, and I've never felt so lonely in my entire life.

Monday, November 8, 2010

Seven hours off the vent yesterday.  Life is good. :)

Sunday, November 7, 2010

Change of Heart?



Love those big teefers, bud!


J originally liked the bumbo, and then went through a long protest period where he screamed everytime we tried putting him in it....today, he apparently changed his mind.  Maybe it's not so bad afterall!

Tuesday, November 2, 2010

Eat it up, buddy!

Feeding.  Again.  I'm sure there will be lots of posting about food.  It's not a fun topic in this house.  We're so far away from our goal, and we're just getting started on a long journey.  Here's how the last few days have gone:

Friday: Took 3 bites of formula & rice cereal.  Gagged.  Done.
Saturday: 4 bites.  Gagged.  Barfed.  Done.
Sunday: Chaotic, skipped dinner.
Monday: 2 Bites, Gagged, Barfed.  Cried.  Done.
Tonight:  3 decent sized bites, no gagging.  Ended on a good note :)

We're still in the beginning stages, but I've gotten a lot of encouragement from others who have gone through this, and I'm determined not to give him a rest.  If he's not sick, he has to try food.  His schedule will involve eating.  We're re-arranging dinner around him, because he needs it.  THIS WILL PAY OFF someday....but for the record, this is very trying.  I am not a patient person, and I want to push him to take more each day.  This is not that easy.  This is not a picu battle, it's a nicu battle.....slow and steady wins the race!

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 yada....it 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 it....like, 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,....no, 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 season....it'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 :)

video

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 lingos....it'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!

Wednesday, September 29, 2010

A Shout out to Brian

Joel with Dr. Brian Boville, 6/2010

When we go up to Tacoma for appointments, I'm fine.  We get in there, we do our stuff, and we get out.  I drive the same way home each time.  And each time, like clockwork, I get a golfball sized lump in my throat that I have to fight until we get to I-5.  We've been home now for over three months.  We're happy (most days, :) and each day that we have appointments for Joel we're receiving good news.  The reason for the lump is pure emotion surrounding MBCH.  Pure Sadness.  Pure hope.  Pure love.  Pure joy.  Pure, uninterrupted time we spent with our savior.  When I think about, talk to, or see the people I became so close to during our time in the Mary Bridge PICU, I am reminded of this.  We had lots of emotion when we were here.

This post is for you.  For you, because you intersected our lives during the very most vulnerable moments.  For you, because God specifically created you to save children's lives.  I've never seen a person with more pure passion for their work.  You scooped up my baby like you would your own.  You thought up "cool" ideas of things for us to do as a family when Adam & I got the kids for a week, and we so desperately needed a 'staycation'.  You have as much excitement over Joel's achievements as we do, and I think part of that was that you were there for the worst.  When I stumbled across this photo tonight, I got that lump again.  Whether it was by choice or circumstance, I am so thankful that our paths crossed.  Thank you for being who God created you to be, and a light in our lives.  You inspire many.  From Joel & I. :)
I've read my last post a few times, over and over debating whether I should delete it or not...it's horribly negative, and whiney.  I can't delete it.  I have a child with cords, and we are going through a lot of stress whether we think we're dealing with it, whether we don't have enough sleep to process it, or whether we can't give up the reins to the person we know can handle it all for us.  I'm going to have bad days.  I'm going to be sad, and angry, and so happy that I'm bouncing out of my skin.  That's what life is all about, and I've got to document this.  It's a memory.

Monday, September 27, 2010

Full of it.

Yep, I'm full of it.  Anger.  Ugly, ugly anger.  Mostly due to lack of sleep & communication with our nursing company.  After receiving 2 hours notice of three unexpected understaffed nights in a row, I thought sleeping it off this afternoon would help, but it hasn't.  I'm having a hard time getting over unprofessionalism, and all sorts of other things seem to be creeping in as well.  The no-sleep/night shift thing really isn't so bad in itself.  I'm angry that I had to send Mia up to Tacoma with my aunt.  I miss her.  I hate knowing that because our nursing company didn't fill these shifts, I am left "half-drunk" (that's what I compare sleep deprivation to) unable to care for Mia....Connor's a little more independant & doesn't try to burn down the house at the drop of a hat.  Either way, I've morphed into a terribly unfit wife and mother.  Can't cook, can't clean, can't sympathize....I'm downright awful every way you look at it. 

I'm angry that I have other people taking care of my baby.  Please don't get me wrong when I say that every single nurse we have is a blessing.  They are.  I miss being the only person (besides Adam, of course) with opinions about 'what's going on with him', or when we should feed him, or what he should wear.  I want to hold my child in my underwear at 2am in privacy, or without someone reporting to me every five minutes about Joel's last spit-up.  I want to be in a bad mood without feeling like I'm causing a scene.  I want to have sex with my husband without someone sitting downstairs, awake.

I'm angry that I've needed support in one way or another....or all of the above and more....for the last six months.  I don't want to need help.  I want to be helping.  I don't want to depend on other people for me to make it through my day. 

I'm angry for being angry.  I want, I want, I want, me, me, me.  Mad, mad, mad.
Are you reading all of this garbage???  I've tried sleeping it off.  I've tried praying it off.  I've tried "positiving my negatives."  Maybe you could pray too.

Thursday, September 23, 2010

Our Cloud Has a Silver Lining

I'm sure you've read my billions of 2am posts on facebook the last month, and I kind of apologize....I use facebook to help me stay awake at night.  Adam and I have been without a night nurse two nights a week for the last month, and we've been doing our best to split the shifts and attempt at being normal people during the day.  You see, nightshift wouldn't be so bad if we were able to sleep during the day....unfortunately, there are other kiddos calling our names when it's light out.  :)  It's been tough.  It seems as though when we finally get back to normal, we're back at Sunday night again.  I've turned into a complete zombie, and I can't remember anything, or carry on a normal conversation without wondering, "Is my sleep deprivation showing?  Do they know?"  LOL
Well, it appears as though that time (at least temporarily or partially) is coming to an end!  PSA has hired 3 new nurses.  The first, is a nurse we had in the Mary Bridge PICU and LOVE LOVE LOVE.  She is taking every other Sun/Mon, while the other nurse is taking the remainder.  The third nurse will be our backup.  I'm SO HAPPY!!!!!  And even though night shifts are a complete pain in the butt sometimes, I've been making a list of reasons to be thankful for our lack of nurses:

#1:  We are at home.  With our baby, who is alive.
#2:  My laundry is getting done & kitchen is clean....at least twice a week ;)
#3:  I can finish an entire pot of coffee without a child interrupting me.
#4:  I've finished a series of 15 books.
#5:  I can listen to Joel sleep.  I love hearing the sound of his ventilator.

Still, I'm happy to be trading night shift for sleep.  Mommies need sleep. 

Joel had a cardiologist appt on Weds.  We were given the ok today for him to discontinue his Diuril...(YAY another med!!!)...and soon we'll be scheduling for him to get his portacath out.  Once that happens, Joel will no longer be needing his blood thinners.  !!!!!  No more shots!  No more ports!  No more baseball sized hematomas!!!  Heck yes!!   We are absolutely thrilled about this.  I was a bit nervous at first when it clotted, but Stefanelli didn't seem worried at all, and neither was Ricker.  Two meds down, and that will leave us with 2 of the 14 that we came home on.  Praise God!!!

Also, our house in Oregon sold today :)

Tuesday, September 21, 2010

Num-nums

Another first today. Feeding from a spoon! We mixed some applesauce with his Elecare feeding today, and it was....well, a first. That's about it. We wanted it to stay short & ending positive. I think he liked the taste of it, but wasn't sure quite what to do once he realized it was staying on his tongue. His gag reflex is pretty extreme....and he choked around the 4th bite, but hey, you gotta start somewhere, right? I think he did a great job!


Of course, he wanted to help....because he's a big boy now, and that's what big boys do.


Monday, September 20, 2010

And these are a few of his favorite things...

Joel's really getting into the whole "baby" thing...

Joel loves:

Pulling hair.
His mommy.
Playing with toys.
Putting toys in his mouth.
Chewing on his hands. All day.
Being tickled.
Being held....vertical. He's a big boy now, and big boys hold their heads up.
Sitting in his boppy.
Putting his hands in YOUR mouth.
Going on walks. We walk. He falls asleep :)

....and here are two more pics....these are from yesterday, taken by Ruthie Lampien. Thanks Ruth, for bringing your camera and documenting this great day for us! XO!!

Baby Dedication

Joel was dedicated on Sunday! We've done this with all of our kids. We get them dressed in their miniature sized "sunday best," and in front of our congregation we promise and pray to raise our child to know Jesus. It's always been a big moment for us, but this time around, it seemed all the more special. We've had a lot of people from our church praying for Joel, and it was great to put a face with a name...(facebook doesn't count!)...we hadn't brought J to church until Sunday because of the chance of him getting sick seemed too great. We told a little of Joel's story and shared a few pictures. I've kept the "day of surgery" picture private for the most part, because I thought it was too graphic at the time. Now that we're past that season, it's a happy picture. He's come so far since then, and every baby deserves to get newborn pictures....J baby's were just,... ummm, unique. :)
Day of surgery, 3/17/10. St. Patrick's day! Still on the pacemaker, chest-open, skin closed....it was later re-opened.

Almost one month post surgery...look at his newborn booties!!!! His scar was almost completely healed, by this time we'd had lots of complications, and they had almost discovered the DIC. SG shunt was in, and you had moved to the large corner room...with a view for mommy :)


Just after coming home, 6/2010, narcotics wean was tapering nicely, as you can see...we got more and more smiles....we were finally getting our "baby" back!!!

And this one's from August. No more narcotics, just you, liking to be upright, seeing everything, as a normal 5 month "dude" would. I love you Joel-buddy. I can't wait to watch more and more miracles happen. Because they do. You are proof.

Wednesday, September 15, 2010

Lovin' the Bumbo

So Joel's finally tolerating his bumbo seat. And he loves it! It took him a while. Trach kids have a tendency to arch their backs & necks....(if you see earlier pictures of Joel, look at his posture, his head is cocked alllll the way back in a lot of them.) We've been working at this since coming home, and tonight it seemed like he realized that he can see and do way more sitting up. Sweet! He also WILL NOT SMILE FOR THE CAMERA! What a stinker...Connor was the same way. So for now, I'll settle for taking pictures of him smiling for daddy :) Love that smile, kiddo!


A Way to Communicate

I've known since I was about 4 or 5 years old that part of my calling was in music. I'm not a Star Search winner, I'm not some hidden talent waiting to be discovered, but I can sing, and well. I've sang in acapella choirs, and concert choirs, and back-up for hip-hoppers. It's deep in my bones to want to sing all of the time.
When Joel was born and immediately in the care of others, it left me with a feeling of helplessness. Regardless of the 9 months he was baking in my tummy, it was hard for me to accept that he'd have a strong bond with me (or me with him) in the circumstances we were placed in. He spent much more time with machines and nurses.
In the little times I was in his room without the company of nurses or intensivists, I sang to him. There were moments of lucidity that I was sure he was comforted by my voice. Maybe it comforted me too. I couldn't hold him, I couldn't change his diapers or nurse him, but I could touch his head and I could sing....
Being the mother of a silent child is a tough place to be, but we manage great. Joel has "looks" that tell me what he needs, and I'm learning them better as we go along. Non-verbal communication is a beautiful thing.
Since Joel's gotten off Phenobarb and the rest of his major medicines, I find that we're able to communicate on a different level....that's more subtle. I can tell by minor cues what's going on, instead of relying on alarms or a silent cry.
Being able to sing to my child is something constant in his life, as so much of his world is not. New people in and out, new medications and their side effects, new environments at appointments... It's nice to be able to have that one thing that remains constant to my son.
Joel's sick right now, and he's been congested enough to be requiring oxygen at times. I sang to him last night when I was holding him, and gave me a new look. He looked right in my eyes, and I felt the Holy Spirit reassure me that He's heard my voice this whole time. Joel's heard me this whole time too. I've never been more thankful for my God-given talent than I am right now. It's been a vessel through my toughest of times, and even though I've always felt that God made me to sing for Him, I think it was also for Joel. AMEN!

Thursday, September 9, 2010

Good, Bad, & Indifferent

Hello to all of Joel's buddies. It was an eventful day in Tacoma.

We showed up at Dr. Ricker's office this morning 45 minutes late, after being stuck in accident traffic & me not getting coffee....I kept my spirits high knowing that our appointment would hold good news, and it did. Joel got his passy-muir. For those of you that don't already know, trachs provide an airway that bypasses the vocal cords. No sound. No crying, no giggling, no cute baby squeals. It sucks at times, but the trach saved my baby's life, so I pick my battles. The passy-muir is a one-way valve. It allows air to go in through the trach, but not out. The expiratory air is forced to go around the trach and out the mouth...which allows vocal cord movement & sound. I got to hear my son have a "true cry" for the first time since being trached. It was truly amazing, and I fought back tears the whole time. A friend of mine gave me a passy-muir as a symbol of hope shortly after Joel was trached, and I've held onto it knowing that our day would come. And it has. Unfortunately, Joel was LIVID with it on, and his sats dropped to the 80's in seconds, so it will take some practice.

Dietary didn't have good news. Joel isn't gaining weight. He'll be 6 months old on Sunday, and he's only 14 lbs. We're not sure if it's the "exercise" of breathing on his own with his increasing sprints, or a malabsorbtion problem. He's pooping waaaaay more than he's supposed to, so we changed his formula to Elecare, which breaks down the protein even more. Joel's albumin & Iron levels are continuing to be low also, so they wanted those checked when we went down to Hematology.

Down at Hematology, the lingering question was about the blood thinners...Joel's blood clot problem is finished. The genetic testing has come back with positive results. He isn't predisposed to clotting. Something about his anti-coagulants was out of whack after his heart surgery, which caused him to go into DIC. It is nothing more than that, meaning he doesn't have to be on blood thinners for the rest of his life, only when his body is in "trauma" would we potentially run into a problem. However, Joel has a plastic porta-cath under his skin, which would cause a body to create clots, so he has to be on blood thinners until the porta-cath comes out. The plan upon arrival was to speak with Cardiology & Pulmonology as to the importance of keeping the portacath in. The issue here is this: The portacath is needed for an access site. It's Joel's only open site for a central line, as he's clotted off all of the others. If he gets into an emergent situation and needed central line access, his portacath would be necessary. The question being, Is Joel still in a risky state to keep it in, or can we take it out? This entire debate was botched quickly after, when trying to draw labs. On September 1st, Joel decreased from blood thinners 2x's a day to once a day. Sometime between then and now, he clotted off his porta-cath. It wouldn't draw anything despite positioning changes. It's a scary thought, but I'm taking it as a sign that Joel's ready to have it out. Let's hope so. We'll go in to I.R. sometime soon and figure out the details; maybe he's outgrown it, maybe it's moved around and can't be accessed as-is. Unsure just yet. God's got it covered.

Saturday, September 4, 2010

Six to Eight

On most days, my morning begins at 5:45 a.m. I walk downstairs to get report from the night nurse, make coffee, and sit in my comfy chair beside Joel's crib. The first three weeks were terrible....I wasn't used to waking up that early. After a few early morning tears, I asked God to change my heart about this. I have a friend who was forced to stay up many nights with her baby, and even without much sleep, she said it was a very memorable time for her. I'm thankful I can now say the same.

Six to Eight is an amazing time for me. It brings back cherished memories of Joel and I together in the hospital. I sat in his room many many days with a book in my hands, listening to the sounds of his ventilator. And now, I have the luxury of doing the same in our home...and in my jammies. :) I can't pinpoint why this time of day gets me ready for my day, but it does. I get my coffee undisturbed, I spend time with my creator, and I have something right in front of me to praise Him for.

Sunday, August 29, 2010

Thought I'd add some new pics of the little dude. Joel's doing lots of new cute things...(of course, he's a baby :) We picked him up a little teddybear attached to a blanket, and I think he made a friend for life. Everytime we give it to him he gets so excited!

And this is how we find him. He hasn't exactly rolled over in one fluid motion yet, but he's trying SO hard! I had just laid him on his back, walked to the kitchen, came back, and this is where he was. He does this over and over and over. And quickly! This kid LOVES laying on his tummy. Sleeping pictures are so precious anyway. He hasn't had much of a chance to rollover, so we're doing tummy time....which is super awkward by the way...but he seems to like it ok. This is Suzi, Joel's Occupational Therapist. She's very sweet, and Joel's still getting to know her. I love this picture....his poor butt had the worst rash!



As of yesterday, sprints are up to 30 minutes, three times a day. After being sick for a few days, he wanted to be distracted from sprints, because he wanted to depend on the vent to breathe for him. (Much like Connor did after being sick...trying to get him back to his own bed after healing from the flu was a nightmare!) Last night, we went for walks around the house, sat on the front porch and watched the neighbors make their loops around the block. I love moments like those. Just snuggling with my baby in a blankie....for a second, I forget all that we've been through and it feels normal. It was a peaceful I couldn't create if I wanted to. I am so thankful.

Thursday, August 19, 2010

Stuff's gettin better

Our family dynamics have changed again...in a wonderful way. Three times a day we get to turn the ventilator off. We unplug Joel from his feeding. We take the oximeter probe off. And we walk around. We sit wherever we want, and we don't have to worry about rearranging cords. Three times a day. The other morning, Joel got to snuggle with me on the front porch couch, which meant a lot to me, because I usually sit out there alone or with Adam, and from the couch, I have a perfect view of Joel's bed. It was neat to have him on my side of the window. It's a new freedom, and it's a nice break from the beeps, and the spaghetti. Things are looking up once again. Soon it won't be minutes, it will be hours that I'll get with him off of the machines. Wrapping him up close to me, like babies are supposed to be.

Monday, August 2, 2010

Crazy Week







Thankful it's Monday. Last week was definitely a test of sanity, among other things...






We're learning how to balance a healthy marriage & parenting on little sleep. We had two nights this week with no night coverage, so we pulled graveyard a couple times. If I didn't have a life pulling me in five hundred directions during the day, it could totally grow on me. I can accomplish during the wee hours of the night things that I notice all day long and never seem to get finished...taking out the recycling pile on my kitchen counter, laundry, art projects, drinking a cup of coffee before it gets cold. Brings back memories of staying up all night painting. Theoretically, it would work. Realistically, I was mentally insane by Sunday. No sleep, general hectic-ness, and Mia smearing poop all over upstairs TWICE in one week, (and that's with taping her diaper on....) I think that pretty much sums it up....and then there's Friday.






Adam had to drop off Logan/pick up Connor in Eugene Friday. We had to go to Tacoma. Since he was driving farther, it made sense that he take the Kia and I take the gas-guzzling suburban. The appointments went great. Joel had an EEG & a venous (2 HOUR) ultrasound. We haven't got the results of the ultrasound yet, but the EEG showed normal brain function, and we were given the go-ahead to start the phenobarbital wean. YAY! We stopped by the PICU, saw some friends, had a great time. We ended up getting out of Tacoma at 5:30. On a Friday. In a car with no a/c or working cigarette lighter adapters. Test faith much? When we finally reached Lakewood, our suction machine was fully out of power, and we got a call from a friend alerting us to a 12 car accident on I-5. We pulled off for gas and decided maybe we should just stop off for dinner as well...we were unsure of how long we'd be stuck in traffic, and we only had about 4 or 5 hours left on the vent battery. Red Robin it was. We were able to save a booth next to the hostess stand and get Joel plugged in before the dinner rush arrived. I was pretty nervous getting him into the restaurant, but once we got settled in and I got my iced tea, it was smooth sailing. Joel's first time to Red Robin was a success! I'm so glad we were forced to act in a situation like this, because now I think I could take him to a restaurant again with ease. We did it!

Thursday, July 29, 2010

Joel On Paper

A friend of mine tonight asked for Joel's diagnosis, and I'm not sure if I've actually given it all out at once. Joel on paper can sound a little scary, but at the same time, when keeping up with the progress he's made so far, it's exciting to see him on paper and think: that's not Joel anymore :)

Joel's Diagnosis:
Transposition of the Great Vessels
ASD & PDA (atrial septal defect & patent ductus ateriosis)
VSD (apical muscular ventricular septal defect, surgery not needed)
Grade 3/Grade 2 bilateral head bleeds
Congestive Heart Failure
Convulsions in newborns
Lymphatic Clots
Multiple Venous Thrombosis
Obstructive Hydrocephalus
Chronic Pulmonary Hypertension
Pulmonary Embolism (lung clots)
Atrial Tachycardia
Chronic Respiratory Failure

Tuesday was another awesome day of appointments in Tacoma. Joel went through a lot and he slept through the night and most of yesterday....it wiped him out. First up was neuro. Dr. Korol said that his phenobarb levels were low when we left the hospital (17 out of a range of 15-40,) and he's gained 3 1/2 pounds since then. There's a good chance that the phenobarbital he's on (for seizures) is at a theraputic level and may be dropped or weaned soon. We're waiting until the results of Friday's EEG first to see if it shows that he's still proned to seizure activity. My prediction is that Friday night, Joel's phenobarb will be getting autographed...with a DC on the front...(discontinued :)
Feeding/Speech didn't go as well. At 4 months, babies can start deciding to suck on a bottle at will, versus by reflex. Since Joel never had to figure that out before now, he's deciding that he'll "pass" on taking a bottle...regardless of the taste of the contents. I was a little bummed, seeing as bottle feeding is fun for the family. I love getting the kids involved with new babies that way. BUT, maybe I should pick my battles. He takes liquid from a syringe just fine, so I think we're going to start focusing on him getting ready to take food orally (by spoon eventually.)
G.I.: Mimi wasn't happy with the amount or consistency of his stools. Weight gain is at goal, (YAY!) but we discontinued reglan to reduce his motility. I was soooo happy to get him off of this medicine. I took it for lactation (it has many uses) and it made me shaky with no energy...among other unpleasant side effects. Bleeeh!
Our medicines at 8am went from 11 prescription meds to 4. We're on our way, people! :)

Monday, July 26, 2010

My aunt Debbie shared our blog address with some people from her prayer group, and I realized that we needed more pictures on here to share with all of you that have been praying for our little guy! He got a new playgym from a garage sale yesterday. Two dollars can buy more fun than you'd think, he's having LOADS of fun grabbing at his new toys that dangle from it!

Sunday, July 18, 2010

Rock My World, Baby


Welcoming a child into the world is a life-changing experience. I remember realizing that after Connor was born. From the moment we drove away from the hospital, it was as though we had left part of us there in that room... it's neat to look back on those days, those thresholds being crossed. My transition onto "Planet Mom" was pretty rough...infact I'd say I entered it kicking and screaming. I had wanted a baby brother for Logan...I was unsure of my new role of having to end bad habits and act like an adult. It's been five years since then, and with the kinks worked out, I was thoroughly ready for another package to add to our growing family. Even with the challenges we've faced with Joel, I didn't prepare for any emotional changes to ripple the way that they have. I didn't expect any life changes after coming home. Wrong. A new baby is something to hold dear, to protect and cherish. Joel is something above and beyond that, and I feel special and loved because of it. Instead of our new baby affecting our lives, he's affecting everyone within earshot. A three-month stay in a hospital does a lot for a family with faith. My husband and I learned just how much effort it takes to stay insync with stress and miles between us. We tried harder, we loved more, and each minute together was spent communicating, even when we didn't want to. It was tough on us, but we're stronger today than we've ever been. Every minute we had with the kids was one that we were thankful for. We were given a chance to share with others what big faith was all about, even when we were unsure of tomorrow's outcome. Spiritually, our family grew together in ways we didn't even know were possible. I got the chance to meet & get to know some of God's best work, and I'm telling you right now, they all work at Mary Bridge. I love every single one of them. I made life-long friendships with people who are dealing with similar situations, and they lift us up and encourage us daily.

My family came up to our home for a weekend visit, and I'm coming to see the affect Joel has had on them as well. We hugged tighter than we used to. We stayed up later to talk and hang out. The cameras were out at all times. I don't think I was the only one to notice the change.

What a wonderful gift we've been given. My eyes are opening to a glimpse of our Father's love for us. He didn't just give us a new life. He gave us a child that is going to change the lives around him, and he's just getting started.



Tuesday, July 13, 2010

Overdue Update:

We have had a busy last two weeks, including lots of appointments at various places.

Cardiology: At Joel's last appt on the 7th, his EKG & echo looked amazing. Stefanelli said if it wasn't for his lung clots, he would pass him for his once-a-year check up. This is awesome.
Hematology: Dr. Irwin was pleased with Joel's progress. Full blood workup showed all normal levels, which allowed us to drop his diuril down by half & discontinue aldactone completely. His thyroid levels were normal also and we discontinued his synthroid. Genetic testing was done with the same bloodwork, so we will know if Joel needs to be on a blood thinner forever, or just before "body trauma," like surgeries or procedures. Hoping for the latter of the two.
Speech: What a huge milestone this week with Jennifer! Joel took his first bottle EVER, and did great. His wean & med changes were pretty extreme since then, (lots of vomiting & choking,) so he hasn't had one since, but we were given the ok to give him one 10ml bottle a day and work up from there. I'm ecstatic!
GI: Finally got our Doctors right. We were scheduled to be with Dr. Pickens. I met him for one appointment, and I don't care much for him. Thankful that we were able to get back with Mimi in Tacoma. Our main concern was his Reglan every 6 hours. It increases motility, and Joel's been crapping almost every diaper...(not sure what I'd do without cloth diapers!!! HOLY COW!) So we were able to get that decreased in half. This med is for his reflux, and so he's been throwing up more....after his wean is over-over, it should be better. His feeds were also increased, and in 3 weeks, we should be up to a point where he gets to be off for 3 hours/day instead of 24 hours of continuous feeds.
Pulmonology: We had an appointment with Ricker a week after we got home. His only goals for Joel are #1, to grow. #2, not to get admitted. I'm fine with both. :) It's not fun trying to wean a kid off a vent when they're going through withdrawals, and by August, we'll have grown a bunch.

At 4 months, Joel weighs 11lbs, 4 oz. Thanks for reading!

The Cord Prayer

The cord prayer. I got this idea from my friend Stacy. Her baby came home with lots of cords too. If you have more than one electronic cord behind your t.v., you understand how quickly it can turn into spaghetti....and if you know me, you know how much I hate my husband's THOUSANDS of electronic "spaghetti" in our livingroom...beneath the computer...spilling out of open boxes in the garage....

Her cord prayer was much more eloquent than mine,...and on a bad day (or week it seems,) I have to fight the urge to cuss during my prayer time. "God, please help me have some &%$#%# patience today with these (*&^%#*% cords, or I'm gonna !#@%#&# ^$@#! I say this already knowing the answer, but I hope God hears my heart when my prayers turn to gritting my teeth and spewing out garbage like this. It's frustrating. I have a kid with cords. They keep him alive, and I am thankful for them, but there are times when I fantasize about unplugging him and running as far away from his machines....to some place tropical. :)

Wednesday, June 30, 2010

Ummm, I'm an RT??!

I've never been so tired in my entire life. Stacy told me I would feel that when I went home, and until now, it hasn't really applied to me. In fact, I probably should have taken tylenol pm a few nights. But, yesterday, we ran into our first live "training exercise," and since then, I feel like a zombie. You were right Stacy, I need a nap!

So, yesterday afternoon while some friends were over visiting, my nurse yells at me to come into the family room...with urgency. I run in there, thinking she's dropped something, kinked a cord, something along those lines...and instead, I come in to find Joel....blue-faced up to his eyebrows. We suction. Nothing. Suction again. Nothing. I flip on the compressor. Stats stay below 90. She grabs a towel roll. I grab the extra trach, lube....I start loosening the trach ties, and we decided to quickly suction one more time to see if we can free up the airway. BAM. A ton of junk came out. Obstructed airway lesson #1. It took a good 20 minutes to get his color back to normal. He stayed a white-gray for quite a while.

I felt like a deer in headlights.....DID THAT JUST HAPPEN??! Although it scared the living crap out of me, I was a little excited. I did it. We did it. There was nothing to prepare me for that. You get the teaching. You read the books. You try to absorb what you can, but until a situation actually comes into play, you can't practice. You can't practice an adrenaline-high. It was exciting to know that in that situation, I didn't panic. I was completely clear headed. Focused. WOW. I'm still almost in disbelief.

I want to thank all of the staff at Mary Bridge PICU for helping me learn all of the necessities. I know I had a bazillion questions, and bugged you and bugged you for training and lingo and hands-on. I was so scared, and I'm sure there's going to be more times like these in our future. Everything you told me was fresh in my head. Thank you for preparing me as best as you could. I am so thankful for you!

Saturday, June 26, 2010

Can you say Awkward?

Yesterday was Joel's first day of scheduled appointments. I was totally excited, because I remembered sitting in the PICU, and having people come in to visit the nurses with their discharged babies. It was neat to see them coming back. I knew that someday very soon it would be my turn. We made it out of the house with no major catastrophies, thought we packed everything.....we forgot diapers, and the carseat attachment for the stroller.....not too bad for our first appointment! Luckily the doctors offices carry diapers, they had sympathy for us and gave us a few for the road...haha.
I was completely unprepared for the stares we got. HOLY COW. Maybe I'm in la-la land here, or just way too comfortable with our new entourage, but I didn't realize how different we looked to the rest of the public. I've never been noticed so much in my entire life, and it made me super self-conscious! I'm not talking a few looks,.....I'm talking long stares, and people looking at me like, "Oh. I feel bad for you." Special-Needs Moms: Does this drive you nuts???? I mean, I know people were having the best of intentions here, but come on, I almost felt like a celebrity. I get it, but I don't. My kid is totally normal except for the extra cords. I guess I'm still in that "new-mom" stage, where I expect some looks at the new baby, and I get excited until I realize why they're looking. It's not just because he's cute....people are almost afraid to look at him or talk to me, and that's so stupid. He deserves all of the gawking that new infants deserve. He's perfect.
It's not that I hate sympathy. It's just that I don't really understand the thinking behind it. I would never think to a person with a trached kid, "I feel bad for you." The trach provides an airway for my child that has respiratory failure. I'm thinking that's a pretty awesome thing. Please do not feel sorry for our family. We are not sad or burdened. We are absolutely ecstatic. Our child is alive and well....he just comes with a few accessories. Don't be afraid to try and hold him when you come over, or tell me how beautiful he is, (and he is ;) and to the perfect strangers out there: if you're curious, feel free to ask me questions, he is something I'm thankful for and proud of. I would LOVE to share the miracles that have happened to this little boy. :)

Tuesday, June 22, 2010

We are the new normal.

I think you know life is going to be different for you when the pharmacist calls you on your cell phone to give you his home phone number. The pediatrician meets you after hours when your kid doesn't have any real symptoms of being sick. This is a big deal. Joel's life is a big deal. I'm not going to lie. We've been home for almost a week, and I'm happy enough that my cheeks hurt most of the day. But underneath all of the happy, I'm nervous. I know I have all of the knowledge that I could possibly absorb. I've memorized every word of my respiratory book. I triple check all of the medicines he's about to get, and I leave post-it notes close by incase I think I'm going to forget something....and yes, it matters that I'm prepared, but things that happen around here aren't always things you can prepare for.
Joel's sub-q port tape got stuck to one of his blankets, and somehow he managed to pull it out in bed. I put a new one back in, but in his bedding was a big puddle of blood. Blood thinners. It's a 30 gauge, I couldn't even imagine that much blood from one tiny needle poke, but it did.
I love being home. I have more things to be thankful than I even remembered while staying at the treehouse. I've planted flowers. I got out my sewing machine during naptime and made Joel a new blanket. I've been in the kitchen for hours and hours and hours....and I can cook without having to have the other kids in the same room as me. The kids are content. Adam is content. I feel like Joel is too....he's sleeping a ton. He's gained a pound since being home...his inline suction was on when he was weighed, so it wasn't completely accurate at today's weighing, but it was close.
Today we ended up in Joel's pediatrician's office after hours. His secretions have been thicker in his lungs, and albuterol really isn't helping much. Ricker called for a tracheal aspirate around 3, and Joel slept almost allday...so much that the nurse and I were worried. Dr. Dalan was super nice, and after getting all of his gear set up in the room, realizing we didn't have the right suction catheters...figuring out a solution, etc, we didn't leave his office until almost 7. I'm trying so hard to control fear today. Only God can number our days. God says do not fear.
It's not like I can just run to safeway and grab tylenol. It's a big deal. Everything is a big "scary" deal....or at least it is for the first trip to an unplanned appointment. Is this something I'm just going to get used to?

Saturday, June 19, 2010

There's no place like home :)


We are thoroughly enjoying being home! A lot of adjustments have been made, and I'll post something much more reflective later, but I thought I'd put up a picture from yesterday of Joel outside with me :) It was his second time being outside and he settled down after a few minutes....not sure if he disliked the wind, or just my gardening. HAHA

Wednesday, June 9, 2010

Joel Update

Hello all. It's been a busy week for us here in the PICU.....Joel's doing amazing! He weighed 4.11 kg this morning (a little over 9lbs,) and is slowly continuing to gain weight, which means that he is ventilating at a comfortable rate. He weaned off his oxygen support too!!! He still needs to be on the ventilator for pressure support reasons, but as he gets stronger and gets to a more normal weight that will eventually be weaned also.
Joel's hydrocephalus seems to be under control with his new shunt. One ultrasound this week showed the ventricals getting a little bigger, but the next day they looked unchanged. Neuro wasn't alarmed, but we're keeping a close eye on it, and he's getting head measurements daily.
His amiodarone (heart) was switched to a different med. I don't know how to spell it, but it's a milder medication. The old medication has a long "half-life," so if any issues are going to pop up from it, it will be over the weekend most likely, so I am very thankful that we are having to continue to stay here until early next week. Close monitoring is always a safe bet with Joel.
His issue with breastmilk has resolved. :) I'm so glad too, because all of the milk & colostrom we saved, he's finally able to take. He was behind enough on his feedings that earlier this week he was still getting colostrom from his first week of birth!
Physical Therapy and Speech have seen a lot of improvements as well. Most babies after being intubated for over a month will have oral aversion, and if any, his is minimal. He loves his binky, and this week he's started putting his hands in his mouth, and bringing his hands up to his face...(this is really good for the muscles in the face and throat because it forces the tongue to move to the front of the mouth.) His legs and arms are getting stronger and are moving more, so they aren't as tense and "froggy-legged" as they used to be. He will continue seeing PT and speech once we get home.
Insurance, Medical Supply, & Nursing are finally wrapping up. Medicade is being a pain in the butt,....but could we expect any different? At least I was told to expect this, it makes me all the more determined to fight.
At the moment, Adam and I are "rooming-in" with Joel. We are spending the next 24 hours in his room without the help of an RT. It's one of the final check off's in order to be discharged. So far, no catastrophies! (Thank you Joel!!! He likes to misbehave from time to time during the middle of the night...) Although, we've moved rooms now FOUR times in the last 3 months, and two times in the last week. There are benefits. We have our own bathroom. Our son is the healthiest kid in the PICU....FINALLY. Drawbacks?? We have a new nurse, and we're far away from all of my favorites. Not to sound like a total crab here, but I like my nurses. I don't want anyone new, and after being here this long, it gets frustrating to explain my kid to someone who doesn't know him. Oh well. We will be out soon enough, and until then, I don't have to walk down the hall to pee. :)

Tuesday, June 8, 2010

FOR ADAM


Needless to say, the last three months have shifted my priorities a bit....Ok, a lot. I'm a part-time mom, a part-time wife, I have only one chore to do a day, and sometimes that doesn't even get done. My entire existance, it seems, has been placed on hold. AND, for the first time in my life, I feel important. Like, really important. And missed. It is very apparent that a household and family can go bananas without a mama. Kids go into shock, the house doesn't look, feel, or smell right, the husband is forced to do all sorts of things he wouldn't normally do...ummmm, SCARY. Am I patting myself on the back here? Ok, maybe, but that's not what this post is about. It's about the man who picked up the slack when I left.



For the last 12 weeks, my husband has gone above and beyond the call of duty. During the week, he's at home, working and taking care of the house and cat...mowing the lawn, and realizing just how fast a big house can need dusting. He's getting recognized, with a nationwide company for his good work & ethics. He has spent hours in the garage, setting up my pottery studio, so that it's ready for me to jump on in when I get home. He's been working on my business website. He's taking care of finances, which are OUT OF CONTROL,.....(and it's just the beginning...) Commuting on his weekends, he's driving back and forth, with a smile and a good attitude. I am amazed at his composure when he comes up after a long day of work and wants to immediately go see Joel. It has to be exhausting walking in his shoes. He's taking special time to do romantic things, and cover my emotional needs, so that our relationship can remain a rock, regardless of circumstance. He has been my 3/4 when I can only be 1/4.


I want you to know how truly grateful I am to have you by my side. To give me piggybacks when I can't take another step. I am your #1 earthly priority, and I say that with pride, because I know you don't take that committment lightly. I am so lucky to have you for my husband, and the father of my children. I promise, you'll have your wife back soon.