Life Starts Now.

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

Saturday, January 29, 2011

Questions? Questions, Anyone?

I follow a few other blogs for special-needs kiddos and their mommies.  It makes me feel better knowing that my situation and knowledge might be of some help to another if I'm at all able to offer them support.  One mom recently posted a number of FAQ's because she gets asked the same questions over and over about her son.  And actually, all of the questions she posted were questions I had wondered about them and didn't ask because I was afraid to.  There's something that happens when you personally invest your thoughts and prayers in's like having a one-way friend, that you really don't know much about other than what they post.  It got me people have questions about Joel?  My blog has close to 6,000 views, but very little comments, I know people do actually read this stuff. 

I hope that if you feel compelled to ask questions, you will.  I can't tell you the number of times people see Joel in person and have a pained look on their face when they ask about him, like maybe they aren't supposed to ask?  Be curious?  I don't know.  I'm not at all guarded about the things that we're going through with Joel.  I love sharing our story because to me, this is one of the best chapters in my book, stressful or not.  My son is a miracle, so ask away.

It's as simple as N-O.

Joel's new trick:  Shaking his head "no" when you tell him to cough, ask him to look at you (he'll think you're trying to make him exercise,) tell him to go ni-nite....pretty much any request, and he's figured out a response for it.  NO!

Can I please SHOUT TO THE WORLD HOW FREAKING AWESOME THIS IS???  Do you know the significance of this?  Do you know what kind of babies shake their heads no at 10 months old?  Normal babies do. 

Thank you God for giving me another piece of heaven.  It's so cute to watch him be so proud of himself, and it's a wonderful reminder of the healing He has done in Joel's precious body.  We won't know until some time what (if any) lasting side affects Joel's brain bleeds have left for us to combat.  I am waiting with comforting faith that this has been already taken care of, because I know it has.  Thank you for healing my baby!

Good morning!

How does it always work out that the days I have time to blog I have nothing to write about????  Life of a mom, I guess :) 

Sunday, January 23, 2011


Another dreaded post.  This is such a frustrating battle we have with Joel!  The kid is amazing, I won't forget to add that.  For a child who was intubated for the first 2+ months of his life, and then trached, it is almost unbelievable to me that he has near zero oral aversion.  He puts everything in his mouth like a normal baby would.  Unfortunately, his gag-reflex is on overdrive.  I've wrote about this struggle before. 
We have made progress, just not big progress.  Our G.I. doc is now allowing us to feed Joel three times a day by mouth.  That means that three times a day, we feed Joel some sort of stage 2 baby food, and he takes a few bites, and gags and throws up.  :(  I'm REALLY hoping that after his trach comes out this situation will improve some, but after reading what I have about traches, it doesn't sound like the trach itself should affect eating.  It may just be from being intubated for so long, with the combination of the reflux that he has. 

We've also come along in his tube feeds.  He's still on J feeds (meaning food goes directly into his sm. intestines,) but we've added bolus feeds to his gastric.  THIS IS HUGE!  If he can keep from throwing up his G-feeds, we can advance to all gastric feeds.  The risk here is aspirating, because having a trach increases that risk.....really, the bottom line here is that respiratory and feeding conflict with each other.  Hurry up trach, GET OUT!

So right now, Joel's at 30mls,(that's one ounce) of formula in his tummy, once a day.  If he can keep that down without puking for a week, it increases to that amount twice a day.  Be praying!  XO

So this is how it is. We wait.

I always debate posting things like this.  Negativity.  I have dozens of saved drafts.  I open them later, and think, "wow, so glad I didn't post that." But really, that's not how my life is right now.  Things aren't all hunky-dory.  Yes, we have brilliant moments of peace and joy that lift my spirits up so high that I feel like I may never come down.  We are happy.  But I'm also not.  Part of me feels terrible guilt, because I'm constantly reminded of mothers who have terminal children, or none at all.  I'm so incredibly grateful for all of the healing that God has given to Joel, and our family in like this change families forever.  When I feel down, I feel like I'm doing something wrong, like maybe I don't appreciate the things I DO have.  It's confusing.  But my aunt made a very good point this morning while I was talking with her on the phone.

People who have terminal situations, or infant/child loss, are forced to accept the situation as it is.  Obviously, that doesn't make it any easier.  It's a horrible to even think of.  But, it's black and white.  It will be the way that it's presented to them.  For me, it is not.  My child will get better.  He will get his trach out, and he will eventually eat on his own.  We will eventually be able to live like a normal family, but not now.  For now, we wait.  And it's been almost a year of this.  We've been derailed for almost a year.

Tuesday, January 18, 2011


I've never had more emotions about an inanimate object than I've had for this ventilator.  There have been times where I've looked at it and cried, thanking God for helping the man who invented such a miracle machine.  Times where I was excited, knowing that this would be our key to living at HOME.  Together.  I've daydreamed about smashing it to tiny little pieces like they do in the movie, Office Space.  The purest of anger and frustration, never a "why-me", but more of a "IneedtowalkawayorI'mgoingtolosemymind."  Annoyance, as Joel's bedroom, aka, the family room, is directly at the bottom of our stairwell.....and all of the middle-of-the-night alarms echo directly to my bedroom.  Depression.  There is no getting around the fact that having a child on a ventilator means your life is different.  In ways that suck.  Proud, because I feel like God's taken this situation and helped me grow in ways I didn't think I was ready or mature enough for.

The time is near for the ventilator to become "for emergencies only."  It will belong in another category, and that means, that Joel's getting better.  He's getting stronger, and we're one step closer to our freedom.  We're almost one step closer to everything.  Everything.  Our appointment with Dr. Ricker is on February 3rd, when, if all goes as planned, we'll stop the ventilator completely.  Please lift this situation up in prayer.  Of course I want the vent gone.  But I DO want the vent gone when the timing is right.  Lift the vent too soon, and voila, we have ourselves a weak baby.  Don't want that.  Plus, Joel would be perfectly happy keeping the vent.  It's a perfect teether. :)

Can you tell he's tired?  :)  Not tracking so well, buddy.  It's time for bed!

Sunday, January 16, 2011

A Very Small Part of Joel's Story, Our Financial Testimony

We were so excited to be able to share this (very condensed testimony) with our Bethel family on December 19th.  Thought I would share this with all of you as well.

In early February of this year, my husband Adam got a call from corporate.  Due to economic conditions, the nationwide company was forced to restructure.  Adam was demoted and our family was left with 1/3 of the monthly income we were used to.  We had prayed and fasted.  This answer to our prayers made no sense.
Just two weeks later, we were forced to put the job situation on the back-burner.  On March 12th, 2010, our fourth child, Joel was born with 4 heart defects.  He needed surgery to survive.  Priorities instantly shifted from "How do we provide for our four children," to "God, please let us keep all four of our children."
The day before surgery, we got a call from our private insurance company.  They knew of Joel's condition and suggested that we try and get on Medicade.  Joel's surgery would have put us over the lifetime limit, and my husband would be forced to find a new job.  After a phone interview, a DSHS worker was able to qualify Joel for 100% coverage, ONLY because of Adam's recent pay cut.
What began as a 5-7 day surgery and recovery turned out quite differently than we'd imagined.  3 1/2 months, 22 surgeries and procedures later, we left the ICU with a ventilator dependant baby.  By this time, Joel had home nursing, expensive life-saving equipment, 14 prescriptions, 5 specialists, weekly appointments, and a 2.8 million dollar bill...a bill that was taken care of because God was with us.
That 3 1/2 months was the most uncertain time in our lives.  We didn't know if our son was going to live, die, or ever be normal.  But when our finances were taken over like that, we were able to look back at the sequence of events and see that God had a plan for us, and a plan for our precious little Joel.  We sat in that PICU with our baby with complete confidence that God had everything in control and that He was with us!

Thursday, January 13, 2011

Just a little taste.

We were without a nurse on Monday, by choice.  Ladonna had nursing NCLEX to take on Wednesday, and I volunteered to let her to take a day off to study.  We've had company since before New Year's Eve, and I really DESPERATELY wanted a day at home with no one here but us.  And to my surprise, our OT also cancelled for our 9am, so we truly got what I was craving. 

I don't know about the rest of you mommies out there, but I have this thing about Monday mornings.  If my house is thrashed....(and I mean thrashed....did any of you catch my 365 Picture of Mia's room?  I neglect housework when we have company....FOR REAL.)...on a Monday morning, it sets my week off completely wrong.  Instead of getting a head start on chores, I end up staying in jammies, drinking coffee until 11am, overwhelmed with what is infront of me.  So I tidied-up the night before.  My house wasn't spotless, but it was good enough for me to start my day NOT thinking of all I wouldn't be able to complete.

We colored.  We had "school work" time, doing flash cards, and reading together, the four of us.  I put off the Monday morning calls until naptime, and other than that, we were able to live our day like I think we would if Joel didn't need nursing.  Sure, we couldn't leave our house, but we didn't need to.  And oddly enough, I got more accomplished in my day without nursing than I do with nursing. 

Sometimes what you think is a help, is also your distraction.

Now this is not to take away from the tremendous help our home nurses are.  We love them.  I could not survive without them.  Just sayin.

But a day without other people in my house was exactly what I needed to regroup.  And feel normal.  It was like a bite of chocolate at 3pm.  God gives you exactly what you need at exactly the time you need it.  Sometimes you just have to ask for it....and then look for it.  Thank you Jesus....for this little taste of our freedom.  I love you.

Tuesday, January 11, 2011

Just Stuff. Progress.

This is merely for documentation.  Sometimes I like looking back on old posts of mine, to see how far we've come in progress.  Here are some of the main things we're working on right now with Joel:

1- Passy-Muir.  This is the one-way valve that forces air to come out of his mouth instead of out through the trach.  He's tolerating it better than he used to.  We're going for at least 10 mins out of every hour.

2- Tummy time.  This is a very long process....and I am not a patient person.  Sometimes I have to sit back and remember what Joel's gone through.  He's not like Connor and Mia.  His muscles are very underdeveloped, and it takes him a lot longer to "get" physical milestones, even though his mental milestones are in place where they should be.  (My two month old niece was here over the weekend, and Joel and her are doing tummy time very similar.)  It was tough working on this before the vent was dc'd during the day, and it's still tricky with his g-tube in the way. 

3-Eye exercises.  Tracking, Periferal, Doll's eye, and Motion. 

Friday, January 7, 2011

The Hub

While we were staying up in Tacoma for Joel's first three months of life, Adam and I frequented a restaurant called the Hub.  They have great happy hour specials, and I love me a good pale ale.  We would watch baseball games on tv, and look at the cool paintings on the walls, or the bikes on the ceilings.  I vividly remember thinking what it would actually be like to live at home again, or wonder if we'd ever get to take our baby home.

Adam and I were in Tacoma again yesterday for appts, and we brought Joel there together for the first time.  It's such a sentimental place for us, and it brought so much joy to my heart to see my little punkin' sitting in a high chair, in his new glasses no less. :) XO

It's Friday.

I got very little sleep last night, for reasons I'm not wanting to share online.  uuuugh.  Either way, I have a free minute, (at 7am no less,) so I thought I'd share the new stuff from yesterday.

We're getting somewhere with our specialists.  Cardiology visits have been pushed back to once every 6 months, Neurology has changed to every 6 as well, and Respiratory is now every 2, and J is no longer considered a complex patient, which makes scheduling easier with Dr. Ricker.  That cloud hanging over my head, reminding me to reschedule, just got a little lighter.

Joel had a bronchioscope on Tuesday, because we've been suctioning blood out of his trach a few times over Christmas break.  The bronch showed very little scar tissue, and he said that none of it was from our was from having a trach in general.  On a mommy note, this was a very feared procedure.  It's hard enough to let other people care for my child, but it's worse when the consequence of bad care would be a permanent situation.  If a child with a trach is suctioned too deep, scar tissue develops and obstructs the airway.  We fired a nurse who continued to suction too deep, and proceeded to train other nurses to do the same.  It was infuriating.  I'm feeling very blessed that all of our nurses are giving the best possible care to our son. 

Yesterday, Joel got his glasses fitted, and Dr. Baxtrom retested his eyes.  They were both testing at 80 at our first appointment, and this time they tested at 64.  I'm not good with the eye-doc lingo yet, but I do know enough to know that his vision has improved.  :)  The glasses are absolutely adorable.  He doesn't hate I guess that's about as much as you can ask of a 9 month old.  He only tries to remove them during the first minute, but if I can distract him, he forgets they are on.  You can read more about Joel's glasses/eye problems here

That's all for now.  Kids are up, Sesame Street is playing, and I'm about to have hungry children at my ankles any minute.  XO
A website after my own heart:

Check it out, crafty/DIY ladies, you'll love it.

Sunday, January 2, 2011

Cliche or not, here they are.

2011 GOALS.

It's funny how these happened to align with New Year's Resolutions.  Adam and I have been watching marriage videos for the obvious reasons...we've been through a lot in the last year.  They've really refocused us on each other, and it's reminded us of the important things in we didn't already know ;)  One of the videos suggested writing down goals for the next year, individually as husband and wife, and then comparing them, seeing how alike/different they are.  So, here are far.

1) Use the Ab Circle I begged Adam for.  Get a pretty tummy by Spring.

2) Go to Chicago.  I had wanted to visit my cousin Jessie in March with Adam & Joel.....we'll see if this one comes to fruition.

3) Regular Datenights.  Adam and I get along WAY better when we get alone time away from the house & kids.

4)  Get Joel's trach out.

5)  Take Joel to the beach.

6)  Get a van.  I know, I swore it off....whatever.  I have 4 kids.  You don't realize what isn't kid-friendly until you experience something that IS.  We need one.  This one's going to be tricky and hard work.  It requires our Kia being paid off...

7)  Stable job & curb spending.  "Do you want it, or do you need it?"  Literally going to put post-its around the house with that quote on it.  No.  I don't need another pair of jeans if I have 3 that fit.  No, I don't need a tanning package to feel pretty.  My hair looks just fine without color on it.  The job part has already been taken care of.  Adam starts his NEW job on the 10th of this month.  Thank you Jesus.

8)  Put pottery dream on hold to FOCUS ON STRENGTHENING THE FAMILY.  This is the hardest one.  I love my kids and my husband so very very much.  It takes major will-power on my part to fight the selfish desires in my heart.  As some of you know, my husband bought me a new kiln for mother's day.  Obviously, I've had very little time to actually spend out in my studio, and it's gotten me resentful for my current "job" of a stay at home mom/nurse manager/jack of all trades...I want this to change.  There's a reason for me sitting alone with Joel right now while I could be sleeping upstairs with Adam and the rest of my family.  There's a reason why my dream has been placed on hold, and I don't want to be upset anymore about it.  Our family has been shaken from being apart for so long and then now, back together, but under extra stress.  We need to focus on meeting each other's needs instead of our own. 

So, here they are.  These are all written down, in short form, on the fridge, where I look at them frequently.  Happy New Year, everybody!

Happy trails to you, sister...

As I've said hundreds of times, to everyone who asks about our experience at Mary Bridge Children's Hospital, I love every single person we've encountered in the hospital.  The nurses and doctors that cared for our son far exceed what we could expect.  It's more than diagnosing and treating and giving medicines.  It's love.  They are professional, and knowledgable, and kind.  They literally treated my baby like they would their own. 

My friend Jennifer is no exception here.  She was one of Joel's night nurses during most of his stay in MB PICU, she got me in touch with another family of a trach baby (who is now a thriving trach-free toddler,) who have given me guidance where staff could not.  Since being home, she's visited us at home.  She even came to work for our homecare company and worked two weekends a month, driving an hour from Tacoma.  Gosh, I can't say enough good things about her without getting sappy and emotional. :)  I was able to see her one last time today before she headed off to Texas with her family....a long move from Washington, but new adventures bring families closer together, and that warms my heart.  (I've moved a lot in my life....and I come from a very close family.)  I can't wait to see what Texas holds for them.

Best of luck to you, Jennifer.  I love and appreciate your kindred spirit!  So long, for now. XO

Saturday, January 1, 2011

Heads Up

What is it about a new year that makes me think so positively?  Maybe it's just this transition, with the importance of what I know is on its way.  Joel's trach will be out this year.  Our lives will be back on track....not like they were, but as they will be.  More privacy, more freedom.  It's like a breath of fresh air.

Calendars are something I have always cherished, and I don't know why.  Maybe it's just the yearly ritual of going out and picking one out.  Over the years, I've gotten cheaper, and last year, I actually picked a few up for family members because they were on the dollar rack..such a "mom" thing to do... :)  Now that we have little Joel, calendars are even more sacred.  It is now my life-line, probably more than my phone.  It has numerous appts scheduled, and it helps me remember things that make all the difference (I think) in Joel's healing.  Last month at the pulmno doc, even with all of the charting in EPIC and with our nurses, I was the only one that knew that Joel hadn't actually been on two different antibiotics (that didn't work) for one month, but that he'd been on 4.  In two and a half months.  It makes a big difference to be able to physically show a timeline.  And it did today, when I wrote out Joel's January schedule on our dry-erase nurse's board.  We're in January now....we're in the right year.  Almost in the right season.  Our time is almost here.

This year calendars and schedules make me so happy, like they've never done.  It doesn't matter whether we get to go to Chicago in March.  We'll get there.