JOEL UPDATE

I'm not sure how much I've been updating or sharing with people, and since I can't remember jack-squat these days, I thought I'd just post what I know :)

So, Joel's actually doing really well. He's still at risk for lots of problems, mainly being infections/sickness from being in the ICU for as long as he has. After last week's testing, they realized that the main cause for all of Joel's recovery setbacks are blood clots. Everywhere on the venus side of his body. We aren't sure yet, and won't be sure for many months as to whether he has a genetic predisposed "condition" that has led his body to clot as much as it has. The clotting is extensive in his lungs, which is why they've had a hard time ventilating him, and now getting him extubated. The clotting has been so bad in his veins that the central line he has in currently is the only place that is still open to place one in. His blood circulation is bad because of the clotting, he has pulmonary hypertension (high blood pressure in the arteries that go to the lungs,)...so, yes. My son is a clot monster. It's better to know than to not know, and I am truly so so happy about that.
Over the next few weeks we are focusing on his respiratory wein & narcotics wein...it is a very very slow process, and there's a fair chance that he will still need to go home with a trache, but I think he needs a fair shot also. He's very weak. Physical therapy started this week, and he's on full feeds with a special formula. We'll see how the next week pans out as far as progress, and by then we should know more about whether we'll continue with excercising off the vent, or moving forward with the trache. Ok, how's that for an update? It was long, and again, I apologize for not returning calls or texts....it's a mouthful to update one person. It's exhausting to update ten to fifteen times a day, which is what I was doing. I do miss all of you, and I will be wanting visits soon. Thank you to all of you for your continued support and prayers for our family and our precious 7 week old baby Joel. Much love!

Not today

The nursing staff wants me to get out of the hospital for a while. Go home for a day, go out. Get a sense of normalcy. Normalcy is leaving the hospital with a baby. That is normalcy. I completely understand that immersing myself in a hospital environment is not normal, that it can make my mind fuzzy and forget what day it is. I like it that way. I want to be "in it". Why the heck would I want to go out into reality right now, where everywhere I go I see new mommies with babies, husbands with wives, families together...and every piece of my existence is "on hold". Cooking, cleaning, looking for matching socks, wearing pajamas and not leaving the house for days on end...these are things only a crazy person would miss. I am not strong today. The hurting boobs did me in.

Another day, another day. Wishing my boobs would just fall off my body...I forgot how painful this is, even my armpits hurt! OW! I swear the devil is working overtime on me. First thing I hear this morning when I walk into the PICU: crying newborn in the room next to Joel's. Please, torture me a little more, why don'tcha. I wish he'd move on to someone else, I'm not budging...it's annoying, but I'm not budging. :)
After the initial boobie-shock, I got to spend some good time with Joel. They finally reduced his fentanyl to next to nothing. When I spoke to him, he was tracking me with his eyes, and he even smiled at me! Does it amaze anyone other than myself that he can smile through all of this? Incredible. Only a selfless infant could smile during a six-week stay in the hospital. I can't even wrap my mind around that. He is so perfect.
Connor and I are getting some one-on-one too. It's definitely tougher having the needs of yet another person on my plate, but I know he needed me. I'm sure he was feeling as "fish-out-of-water" as I was. He met one of the Tacoma Rainiers this morning, who autographed one of their game schedules for him, and talked with him about baseball for a while. I wonder if they know how much it means to these little kids? It made his day...he can't stop talking about it :)

No-milk morning

Uuuugh. What a frustrating morning. After six weeks of me pumping every 3-4 hours, Joel finally went on breastmilk yesterday. There wasn't enough stored up in the freezer here, so Adam got off work early to bring up some from Chehalis. By midnight, he was put back on portogen. His system still can't breakdown the fats in breastmilk, and they won't be trying it again. It's difficult to explain in a blog, but it's caused by the clots in his lymphatic system, and the effect is respiratory problems (which he already has a hard time with,)...there is no telling when the clotting will be cleared up, but it won't be soon. Dr. Harry said we could try in another 3-4 weeks, or when we're at home, but if things don't go well, we'll know because he'll start having respiratory issues. No thank you. Why force my kid to endure more setbacks to fulfill some "mommy need?" He's had his fair share of roadblocks WITHOUT my help.

Of all the things for me to be heartbroken over, this is so minor. I don't know why I'm so upset about it....I didn't give a crap about nursing the other two. I did my 6-8 weeks for both and said, "screw this!!!" It's something that has to do with my tubes being tied, knowing this is the last, and the one attempt I have to bond with this baby...little to no holding, little to no bathing, little to no physical contact,...and it was the one thing I felt like I could do to help him heal. You know, if nothing else, I could give him what I was made to give him; milk. My son is fine, and he has a good opportunity to improve this week, things are looking up...so why does it feel like I'm mourning?

Weight of Circumstances

Long weekend. I was looking forward to it. Family coming up, party planned, Joel was stable...and then, I got the call. Connor, kicking, hitting, and head-butting my mother. No joke. At first I wanted to beat the tar out of him....but after about 2 minutes, I realized...he's in the same crisis as we are. He's been out of schedule for six weeks too. Adjustment made. Connor's now parkin' it at the treehouse with mama. I'm nervous about it but I think it will be good for the both of us. I'm already feeling guilty for not being up there 24/7 with Joel, but I'm going to do my best to incorporate both tasks and try to spend some one-on-one time with the "Connor-man." It breaks my heart seeing this stress through the eyes of a 4-year-old.

A Day for Embrace

It's only 6pm, and so far I've enjoyed every second of the day without effort. I took a walk to a recommended used bookstore around lunchtime. It's amazing what a difference a change in scenery can make. I'm a total wierdo when it comes to book or stationary stores...I don't even have to find anything that I like in there, it's just BEING in there that makes me content. The smell of old books, the feel of handmade paper, drawing pencils... :) I picked up an old book of essays that I read about ten years ago, by my favorite author. It wouldn't matter if I'd read it a hundred times, it's that good, and remembering those stories is comforting. Like home.
I don't know what it was that put me in such a great mood today...maybe it was the weather, maybe it was my company, or the mention of us going home. I know it won't be soon, but even with the mention of a trache, it is reachable...possible...there is a silver lining. Obviously I don't want the trache, but I do want to go home, and if that's what is best for my son's healing, then whatever. Just say when. We'll take it!

Fall With Style

I'd like to take a minute to blog about the saying that has played such a huge part in the last couple of years for me. "FALL WITH STYLE" was a sermon given by my old pastor in Roseburg, and it mainly referred to having strong faith in uncertain times. The economic status of Douglas County in 2008 was terrible, many people in our small town were either unemployed or laid off....(probably many of them still are.) It really challenged mine & Adam's "spiritual status" if you will. Adam and I had just gone through a tough time in our marriage, and climbing back from that was hard enough,....we weren't expecting such a tough hit on our income as well. For four months in a row, we brought home $600 total a month....yes, it was scary, but we didn't panic. We prayed. And we waited. And we ate in, and spent quality time with the kids, and we laughed, and we loved. We refused to let our monetary situation get the best of us. And looking back on it, even at our (very very sad) bank account's worst, we were the happiest we'd been in our five years together. You would be AMAZED at the the amount of meals that can include potatoes!!! :) We fell with style.

And here we are again, we have so many reasons to turn into "Chicken Little," but one very true and faithful reason not to. Our God takes care of us, and we trust in his promises. His love never fails us. We will fall with style, and he's gonna catch us on the other side.

A week before Joel was born, Adam was demoted, and our guaranteed income was sliced in half. After being admitted at Tacoma General, we got a call from our insurance. They got us in touch with Medicade, who accepted us for 100% coverage ONLY because of Adam's new decreased basepay. This hospital stay is expected to be HUNDREDS of thousands of dollars.

This little saying from a sermon I heard two and a half years ago has taken me far in my spiritual walk. It reminds me that I have nothing to fear. When I'm up in my son's room, I can relax and enjoy these precious first moments of his life, because that's exactly what they are. Precious.

Reading material?...check!

Twilight got me. I resisted as long as I could. :) Don't worry, I'm not becoming some crazed fanatic or anything, but I totally get it. I get why every woman from age 15 to 50 finds this series so fascinating. It captures that "first love" feeling so well; it would give anyone chills. And once more, I find myself getting angry with a certain "crowd" that claims that Harry Potter and Twilight are bad reads for christians. (And, I may not be a "Team Edward girl," but I LOVE LOVE LOVE Harry Potter!) We can get a gist of what the books are about by watching the movies, but there is SO much missing between the two. The Harry Potter movies may be about magic, but the Harry Potter books capture the heart of a little orphan who finally is finding acceptance and belonging, and love. In the book, magic isn't the focus, it's just a detail in the fight between good and evil. Same goes with Twilight....vampires are present, yes, but this is the most unique & wonderful love story! I know it's just my opinion here, but it just seems ignorant for people to throw such a big fit over books that they haven't read...movies, I understand, but books? Oh, and can I also give a shout out to the author for not making them have premarital sex? Just sayin'....there are more teens reading this book than not. :)

Sunday Sunday

Ok, enough of the "Debbie Downer" crap. I've been in a rut, and it's even been bothering me to listen to my own thoughts. There was a time long ago that I struggled with depression. This is not going to be one of those times. I hold onto something stronger than I am now. Something that doesn't make me hate myself. God is so much bigger than all of this, and that makes me smile....that, and the sun peeking through my window. :) Yeah sure, it sucks to have no privacy, having people come in the room while you're pumping, or crying to your family on the phone, not being able to sing to your child without someone overhearing....so what. It's not going to last forever. Soon I'll be singing too loud in my livingroom again and driving Connor up the walls...

Today is going to be a good day. I can feel it. My precious little bundle is wrapped up tight in a white blanket, and he's sleeping soundly. There's a small leak in his breathing tube, and it makes a noise loud enough to hear him breathing above all of the dayshift beeps and traffic. This IS heaven...even here. Even now. My little boy is alive. That breathing is music to my ears.

Post #1

So the blog has been remodeled....temporarily. I don't plan on being in here forever, but while I am, I better get these feelings and thoughts out before my head explodes. I am keeping a paper journal for Joel to read when he gets older, but I don't want him reading this. The last thing I want is for him to feel that our pain was caused by him, or guilt for any reason. I'll edit his journal to have positive thoughts & useful info about his surgeries and recovery experience...as well as the "mommy notes" I write to him each day.

You know, I've heard about people having similar experiences like this; prolonged hospital stays, but it's not until you go through it that you can truly fathom how huge it impacts your minute-to-minute existence. The frustrations and heartache are endless...it really gets me wondering what people do in a circumstance like this without Jesus. What do they cling to? What do they hope in in the case that things take a nose dive? Not to sound judgemental....I'm not dogging on believe systems here...to each his own. I am just curious. I hear we're taking this better than most parents in this predicament, and that scares me. This rollercoaster is excrutiating at times.

It's a strange feeling to feel out of control of my emotions once again....adolescence was a terrible time for me for that very reason. I try to keep my head up, and for the most part I do. I have my moments though, which end in peptalks or pastries, and then I get back on track. Joel was having a rough time today. We think it might have been gas. Natural instinct tells the mommy to pick up the baby to make things better. My child requires a good 5 minutes of preparation for me to hold him, and even then, it's in an uncomfortable position and he has cords and tubes everywhere...good luck moving your arm when he's taped to the chair, your sleeve, and the pillow. This is the kind of thing that normally I would have patience for, but after a month of this, can bring me to tears of frustration. I'm so ready to be home today.