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.

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.

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 :)

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.

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.

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!

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.

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.