Jabulani Jonny

So I know I should probably be driving around looking for houses this afternoon, since we signed a contract on ours last night and we have exactly a week and a half before we go to Philly. Buuuuuuuuuuuuuut……

I'm 5th in line for the Apple iPhone at my local AT&T store. jEric's 4th so we're keeping each other company. Am I keeping the iPhone? Nope. Going on ebay within minutes of touching my hands. There are iPhones listed for $2500 on ebay right now. Come on big money, big money, no whammy's.

This has actually been very therapeutic for everything that's going on right now. You huntin' for an iPhone? $2500 Paypal and it's yours. A brand spankin' new, unregistered iPhone in your mitts. You know you're tempted.

UPDATE:  We sold the iPhone on Ebay for $750.  We made a whopping $100.  Oh well, atleast we tried.  Tough to let that thing go, super sweet.

I am truly overwhelmed at the love and support that we are being shown right now in the midst of our challenge.  I'm learning that I need to refrain from reading all of the emails of prayers that are being lifted up for our baby because I find myself at the verge of tears from every one.  I'm not sure why we were chosen to be the parents of this little one, but we were, and it is humbling to recognize that we have been called to be the focal point of something that is bigger than ourselves, bigger than our family, bigger than just having this child.  I am lost in the bigness of God in this situation and lost in the joining together of His "body" that is occurring on our behalf.  Lost and overwhelmed…right where we need to be to truly see His strength and provision during this time.

What the heck is up with Quicktime crashing Firefox and Internet Explorer (no I don’t actually use it, just troubleshootin) every stinkin’ time I visit a webpage that utilizes the QT plug?  Apparently I’m not the only one.  Driving me batty.  Everytime I visit my own page.  Blam Firefox goes down.  Anybody else having that problem?  Funny…it was fine until I tried Safari on the Windoze machine.  Hmmmmmm…..

Hey all,
There hasn’t been much going on in the last week, but we did have another doctor’s appointment in Atlanta today with the fetal cardiologist.  She was looking again at Baby Payne’s heart to get a better idea of if there is truly an obstructed atrial septum.  Again, the upper two chambers of the heart have setpum (wall) between them, but normally there’s a little hole in the septum to allow blood to mix back and forth.  This helps to regulate pressure in the lungs and helps the lung vessels to develop appropriately.  Well with HLHS (Hypoplastic Left Heart Syndrome) babies, they really need that hole to be there because the lungs have to be near perfect for the 3 repairative operations needed for the HLHS diagnosis to work. 

See, with HLHS, the left side of the heart does not function, or really even form, correctly.  As far as I know, the left side of the heart is tasked with getting blood to the lungs.  If it doesn’t form correctly then no blood gets to the lungs, so the baby doesn’t get oxygen.  Basically the three procedures for HLHS creates a way for the blood to bypass the heart and drain into the lungs using only the difference in pressure.  Follow?  Normally the blood pressure of the lungs is lower than the rest of the body, so the blood will flow to the area of lower pressure, get oxidized and filter to the body.  That’s how the three surgeries create a workable solution to HLHS.  Well, in order for it to work, the lung vessels have to be fully formed so that it creates that low pressure environment that will allow the blood to drain to the lungs.

Enter the Obstructed Atrial Septum diagnosis.  Remember when I said it was normal for babies to have a hole in the atrial septum to allow blood to mix back and forth?  Well that is extremely important for babies with HLHS.  What that hole, or perforation, helps to do is to regulate the pressure in the lungs while the baby is in the womb.  If that blood flow doesn’t mix back and forth, the lungs build up pressure which means the lung vessels get thickened walls, kind of a muscular build up of the vessels.  What that does is increase the pressure within the lungs, which means that the procedures needed to repair the HLHS may not work if the vessels are not able to fully develop and lower the pressure in the lungs. 

So as we were looking at the obstructed atrial septum and the HLHS issues, we had a long talk with the fetal cardiologist.  For babies with the obstructed atrial septum to have a chance at all, you pretty much have to deliver in one room and do an immediate heart cath to open the hole in the septum to allow the pressure to stabilize in the lungs.  Even with doing that though, some babies’ lung vessels don’t fully recover and they won’t be considered good candidates for the three surgeries needed for the HLHS.  Children’s Hospital of Philadelphia is one of the leading children’s hospitals in the nation at these types of procedures.  Mind you, this procedure in particular is still fairly new, relatively speaking, and babies with HLHS and an obstructed atrial septum have about a 50% chance of survival, or less. 

We will probably have to go to Philadelphia when Sunette is 36 weeks along.  She’s currently at 34.  So we have two weeks to get ready to go to Philadelphia.  Did I mention that we were in the middle of trying to get our house sold and move to Columbus?  Not to mention all the other "life" stuff that we have.  We will probably be in Philadelphia for several weeks after birth, for the baby to recover from the first of the HLHS procedures. 

So that’s where we are right now.  We covet your thoughts and prayers.  We continue to thank God for blessing us with this child.  We consider a miracle that we got pregnant in the first place.  I just don’t see us getting this far and not coming home from Philly with our baby.

Well, I’ve had this blog for a little while and I’ve never mentioned my CD.  I recorded this on my own back in 2000 and have made only a little effort in getting it into people’s hands.  Shame on me.  So I’m gonna make it available for purchase here on my blog for a ridiculously low price of $5 plus $3 for shipping.  How about supporting your virtually local musician?  Here’s a little background.

Back in 2000 I had several songs that I was working on that I wanted to get recorded.  Due to budget restraints and the desire to learn to record I decided to produce it on my own.  I wanted to try and capture what was in my head with what was available to me.  Thankfully a buddy of mine had a home studio centered around a Roland 1680, which were great little machines back in the day for home studios.  I didn’t have really fancy mics or other equipment.  He did have some nice guitars which I used and put to good use on the album.

I played all the acoustic, electric and bass guitars, as well as singing.  I had my buddy Dave Holland provide the drums and percussion.  Elizabeth Jones and Allen Levi sang backup on a few songs for me and did a great job.  Elizabeth and I sang together in an acoustic trio called In Need of Eve, which also did a homemade CD that I’ll make available soon.

Most of these songs were done in the studio using all acoustic instruments, no loops or synths.  A few were done live in a little home concert that I put on and recorded.  This CD is organic and raw.  I think there were some really nice moments captured and I still feel like these songs can speak to folks.  Below you’ll find some snippets of a few of the songs to give you an idea of the feel. 

Over on the right you’ll see a link where you can purchase the CD using paypal.  If you have any questions feel free to post a comment or contact me via email. I hope you enjoy it!

There used to be links to songs you could listen to here, but Quicktime keeps crashing various browsers. So…. I’ll try to figure out another way for people to preview the music.

I just can’t help but crack up when I see this video. It’s like Benny Hinn for goats.

…at all.  I’ve been working like a mad fiend hound on finishing our bonus room so we can get the house on the market.  I’ve pretty much been working on it for the last 2 weeks, every day, every spare moment.  Hopefully it’ll be done by this Friday and we can get the house on the market and get moved to Columbus before the baby comes.  Hopefully.

We did have another doctor’s visit this past week to check on the baby.  The news wasn’t great, but we’re still hopeful.  Basically put, when babies are in the mothers womb, there’s a hole in the septum between the upper chambers of the heart that allows blood to mix between the chambers.  The hole is there naturally and closes after birth.  A baby with Hypoplasic Left Heart Syndrome (HLHS), which is what our baby has been diagnosed with, needs this hole after birth to allow blood to mix and to find its way to the lungs.

Well on Wednesday we found out that this hole is much smaller than it needs to be and there’s no blood mixing back and forth.  That’s not good.  It means that there will probably have to be an emergency procedure done on the baby immediately after birth.  They will have to go in and put in a heart catheter to open that hole to allow blood to flow back and forth until they can go in and do the first of the three heart surgeries to repair the HLHS. 

We’re defying odds here.  Out of 100 babies born, 1 might have congenital heart defects, which might be a heart murmur or it might be HLHS.  HLHS is probably one of the rarest of the congenital heart defects, and probably the most dangerous, from what I can tell.  Out of 100 HLHS babies born, maybe 10 have this obstructed atrial septum, which is what we found out on Wednesday.  So if it is rare and dangerous, we’ve got great odds for it.  In fact I’m thinking our odds are pretty good at birthing some kind of rare rattlesnake, that seems to be the way the odds are going.

Look, I’ve never been overly outspoken on my Christian faith on this site, but we’re really having a hard time with all of this.  Where is God?  We’ve prayed for 4 years for a healthy baby.  We’ve prayed every day for this baby we currently have.  What’s going on?  It feels as if he’s absent, just standing by.  I know for you non-believers out there you’re probably saying, "see…told ya."  However, I’ve seen too many acts of divine intervention to write God off.  My dad was miraculously healed of terminal cancer overnight, after praying for healing.  So…I kinda can’t just disregard that.

But I’m not seeing God in this.  I’m not seeing purpose in this, and I’m having a hard time.  If this baby doesn’t make it, I’ll have a very hard time defending God to those that don’t believe.  This is our trial, our struggle, our Lazarus, and if something doesn’t happen….it just wouldn’t be good.  So, that’s me being honest, saying the things you’re not supposed to say as a Christian.

As a Christian, you’re supposed to say, "it’s dark, but I know God’s light is gonna shine","I know God has a purpose for all of this", "I’ll have faith in His sovereignty".   I’m not saying that and I don’t really need to hear that from other people. 

So God, here’s your chance to do something huge, something that’s unexplainable.  There are tons of people praying for this baby and tons more awaiting the outcome.  What’s it gonna be?