Monday, January 28, 2008

??? Questions ??? 2

How did Oceana get her name?

Ocean[i]a is a continental area. It's Australia, New Zealand, and the Pacific Islands. Because it's not a continent - such as Europe or South America - it's a general area. Since I moved here when I was 14, I always thought it was a really cool name. It's been on my "I-wanna-name-my-babies-that" list since I was about 15. It's also the name of a Naval base in Norfolk or Virginia Beach, VA. I lived in Virginia Beach for about six years. We had lots of Navy friends, and so I knew the name of that base. It means "From the sea". I know - duh! We spelled it without the "i" because people who've never seen it try to pronounce it "O-she-an-ee-uh". Ugh. It's pronounced "O-she-an-uh". And not O-see-an-uh either. Her middle name is Faith. I always thought it would be neat to have three daughters and have their middle names be Faith, Grace, and Joy (or Hope... or maybe I'll need to have 4 girls). Also, my youth pastor from high school's name was Carlee Faith. I never said it out loud, but in my heart, she's named after Carlee.

Joshua's a bit different. The day we went for our first scan (before we had any idea what was going on) both Matt and I got a chance to spend out morning praying and seeking God. During that day God gave Matt the name Joshua Matthew. We (again) had no idea what was going on, or even if he was a boy or not.
Matt has always wanted to name a boy Joshua - and tried to name Oceana Brian Joshua, but I didn't want to. Her name would have been Owen Joshua - except that it was the initials O.J. - so that name got kiboshed too. (We went to the hospital hoping it was a girl because we had no boy name!) I was never hot on the name Joshua because there are (no offense!) a GADZILLION Josh's in the world. That's one reason I don't call him Josh. (I'm not offended if you do though). One of Matt's best friends was Josh G., so that's been one of his major reasons in wanting a Joshua. Matthew is - obviously - Matt's name. But he has NEVER wanted to name a baby after him. I've always popped his name into every single boy name (Matthew and Joseph, his middle name). But he always shot them down. Anyways. So, God gave him that name.
We left two hours later for our scan, and found out the devastating news. We were planning not to find out the sex, but when we realized it was a bad situation, we asked. So we got in the car and the first words out of my mouth were, "What's his name?" I needed Joshua to have a name, to be real, to be tangible. Matt said nothing until we got home and then he handed me his notebook with the words boxed off "Joshua Matthew". Below Joshua were the words "Strong and Courageous" (thus the name for our blog - read Joshua chapter 1 if you're curious about this!) and below Matthew was "God's Gift". Matthew means God's gift - and both my boys certainly are. Joshua actually means "Jehovah [God] saves". Perfect name for a perfect boy. And he was Joshua from the on.

What will happen to Joshua that would cause him to pass away? (Ie. He's so healthy now, what's going to happen at the end that will be so bad?)
Most likely Joshua will develop a brain infection. The meninges (membrane) over the cele is extremely thin, and very susceptible to the elements. If any bacteria gets into a scratch, or a scab that opens up (like when he's leaking CSF) he could get an infection. The problem is that, normally the body fights infection pretty well. That's why you get fevers (the body's trying to kill the bacteria) and puss (white blood cells fighting the bacteria). If the body cannot fight infection (either naturally or with antibiotics) it can develop septicemia (an infection of the blood) which is potentially fatal.

But brain infection is different. Brain infection can present as any one of these:
"Meningitis is the inflammation of the meninges—the surrounding 3-layered membranes of the brain and spinal cord, and the fluid it is bathed in, called cerebrospinal fluid (CSF).
"Encephalitis is an inflammation of the brain itself."
Myelitis actually means a spinal cord inflammation."
Abscess is an accumulation of infectious material and offending microorganisms within the CNS." (

Brain infection moves very quickly. Antibiotics might not even make a difference for Joshua. And quite honestly, it's an inevitable situation. If he doesn't succumb to infection one day, it'll be another day. This is what the doctors have told me. I don't do much reading on it, because I don't really want to know.
And most likely his body will just start to shut down - ie. his breathing and his heart most likely.


  1. i wanted you to know i've been able to check in on your family for a few weeks now and have been so blessed by all you've shared- what precious children you've been given! i'm so thankful for your willingness to share your journey with all of us! thank you!

    we have four children- three girls and a boy- but i thought your names for girls were funny- our girls' names are grace, patience and lily hope. as i've read, i've thought oceana was a beautiful name, and you've got some great ideas for the future too! :)


  2. Hi. I'm a March '07 Babyfit Mom. I just found out about your blog. I am so touched by your story and amazed at your courage and positive outlook. Joshua is a beautiful boy. He is lucky to have such a wonderful and loving family!

  3. Thanks for sharing about the possibility of Joshua getting a brian inffection. I've been wondering why things still didn't look good for him even though he's doing so well health wise, now it makes sense. Now I know exactly what to pray for. Thanks.


  4. I am in awe of you and your family. I have been following your blog since Joshua was a few days old. I have wanted to ask all the questions that you have answered but was afraid of offending you. I am so happy that you feel courageous enough to write about his journey and how it may end. I am sure writing about it helps you process it yourself. Thank you for sharing.

    The pictures you have posted are so beautiful. He is such a sweet little angel and so is Oceania. You have a beautiful family. I know that God has a plan for your family and he will help you through this journey. You and your family are in my thoughts everyday. May God bless you with peace and comfort.
    Love & Light~ Jennifer Bray, Spokane, WA, USA

  5. Susie, you are an incredible woman. God handpicked you to be Joshua's mom, because He knew you had the maturity and fortitude to be able to smile at the future and rejoice over a baby so special. Joshua and Oceana are so blessed! Keep up the great posts. I stop by every day to see how you guys are doing and pray for your precious baby.

  6. hi Susie, I noticed that Oceana is wearing an outfit from the Cayman turtle farm. That's one of my favorite places in the world! Has she been there? I hope you guys are doing okay today. It's always good to hear from you.

  7. Thank you for being so candid with us. Thank you for sharing your life and your babies.

  8. This is going to sound silly with all the other sweet comments about Joshua but I just wanted to say thanks for letting me know that I'm not the only one who has a list of future baby names :). Oh and by the way I would love to hear about your's and Matt's love story. I left Elim before and showed up the day your engagement was announced and I've always been a little mystified about it all :). Still praying for precious Joshua. Thank you for sharing so much of your story! Its so encouraging and challenging!

    Sarah Clark

  9. How has Joshua changed you? Your family?

  10. Thank you for answering my question, I love the stories about he names! Also, its neat that you lived in Va Beach at one point, I live only about an hour and a half from there! :)