Tuesday, January 8, 2008

Beginning a 3rd Day - 40 hours old

It was so exciting to wake up a 2nd morning and see Joshua asleep in his bed. We've pulled his bassinet right next to our bed so I can sit up and see him. I don't like to disturb him too much, but I do worry that he'll slow down his breathing and get too quiet. So when I check on him, I rub his cheek or his palms (he sleep with his hands in the air like "stick 'em up"). It's enough to make him flinch a little bit and peace floods my heart again. I remember doing the same thing with Oceana - worrying if she was too still - but he's doing great! As the pictures show, he's pink - so his heart and his breathing are good. He's eating well, and filling his nappies.
I have a love affair with these ears. Wouldn't you? I think this is the one Matt calls Joshua's cauliflower (rugby player's) ear. He keeps saying Joshua must have played rugby in the womb. Felt like it too.
These lips are just like Oceana's. His nose is flat across the bridge (because his skull sweeps back quickly at his eyebrows), but the bottom of it reminds me of Oceana. I'm a bit of an eskimo kisser too - he keeps getting nose rubs. :)
Family pictures - not on purpose. It's these pictures I think I'll really treasure in the future, because they're us - as we really are. I think we were showing Oceana that "Yes, Joshua has a nose, ears, mouth... but please don't poke them!" Oh the joys of a busy 21 month old toddler.

I'm ok. I feel pretty good for having just had a baby. Don't be fooled, I don't feel like doing much. But in the scheme of things, I feel so much better than I did after Oceana. I don't think I got off the couch for days with her. I probably have done too much - but that's what new mommy's do! We do too much and then say, "Wow, I shouldn't have done that." Then we collapse on the couch, bemoaning our stupidity and tell ourselves we won't do that again. And then we do. And the next time a friend has a baby we'll tell her to take it easy and lay low - and she'll do the same thing we do. It's a vicious cycle.

Matt's doing really well. I'm amazed by his faith. I was praying for Joshua last night, and it probably sounded a bit morbid - what I was praying. Matt reminded me that we don't need to pray like it's the end, since we don't know it is. He's still alive, so God can still do a miracle. It's so good to be reminded. I felt quite "reprimanded" by him, but he's so RIGHT! Joshua is alive, he's lived longer than the doctors expected, and doing so much better than we could have dreamed. Honestly, the only difference between Joshua and Oceana - for the first few days - is that we have to be careful how we hold him, and we have to change the cloths around his head several times a day.

His sack seems to be leaking cerebrospinal fluid. Basically, the fluid around his brain is leaking through a spot on the membranes covering his sack. The sack's about as large as his head. It has skin that goes up about halfway around the encephalocele. Then the skin stretched out and couldn't go any further and the rest is covered in ultra-thin membrane. One or two places on that membrane have herniated (stretched and poked through) a bit more and we think that's where there's a leak.

Please pray with us that the leaks stop and especially that he does not get infections because of the compromise to his brain. (If something can get out, something can get it in).
Please continue to stand with us, believing that there will be a miracle in Joshua's situation. He's already a testament to the faithfulness and miraculous power of our God - because he's acting like ANY normal newborn. He just happens to have a herniated brain sack besides. I'm amazed every time I think about it.

Thank you for all your prayers. Love you all! - Mommy of 2
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  1. I love looking at pictures of your beautiful family!! They make me so happy, I am so proud of you and Matt's strength! I am thrilled you have this time with Joshua. I love you all so very much.

    Heather Sams

  2. Hello Susie,
    You don't know me, but someone posted your blog link (and now I honestly can't remember where) and I have been following yours and sweet Joshua's progress for just over a week now. He is amazing! YOU and Matt are awesomely strong parents. I think of you and your sweet babies all the time and keep checking for updates. Even tho I'm a different faith, I am praying for all of you and hoping that by some miracle of miracles, Joshua can be healed and stay with his earthly family. Bless you all!!!
    Denise - mom to 4 on earth, 3 on the other side and one on the way.

  3. Gosh he is beautiful!
    I'm so thrilled that you have been given so much time to enjoy him earthside!
    Glad Oceana is taking her duties as big sister to heart... poking the nose, ears and eyes are a requirement! Didn't you know that?

  4. I'm so glad everything is going ok. I am praying for a miracle for little Joshua. He is such a beautiful little boy and Oceana looks like such a great big sister! :)

  5. I am sorry for my asking, because I dont know you! He is miracle baby so far, is it really no chance for operation? I will pray for cure!

    During my preagnancy I did read a lot about birth defects, and was so desperate because I didnt know I was preagnant when I did use some dangeorus medication and pain killers (just for broken tooth, how stupid). Doctor left to me to decide about abortion. Of course I didnt!
    But I had a fear until the end of pregnancy. Plus I almost lost my baby at six months pregnancy and when he was born he had really high bilirubin.
    So I know how you feel and how it hurts.
    When I was preagnant I went to church one day and stay there for a long time and prayed to God that everything turns to be OK, and you know when you are desperate you ask for a sign.
    After I saw a child in church yard with his mum, he has Down syndrom and was very disabled. I was devestated! Maybe that is the sign! Later I saw him again that day, but than I saw how much his mum loves him, they were playing and laughing. Then I realised that child is always a joy for mother and is loved, no mather what!
    Trough my preagnancy I wound a peace in thinking that maybe sick babies must be born and that God try to choose a special, good people to be parents for that sensitive, special children!
    My son is now OK, thanks God, but sometimes I have fear, maybe later in the life he will have consequences...
    My point is that from that day I know that there is God!
    Most mothers would choose to have abortion or even worse to leave their child, but you didnt, you are there for him to make his time on Earth full of love and care!

  6. He's a doll! Enjoy every minute.

  7. Hi, you guys seem to be doing great!
    There are some tricks to the using a hat we can tell you about. Also changing his diapers on his belly putting the diapers on backwards helps a lot too. You can also get a bassinet carseat so he can strap in tummy down. He is so cute. He reminds of us our daughter Evelyn. You are in our prayers. Brian and Elizabeth

  8. Hi Susie, Just wanted to let you know that I am thinking of you guys often & wishing you well.

  9. I was just talking to a friend who would have no way of knwing you and when I started to ask them to pray for joshua they already knew can I just say there is a mighty army of prayer warriors lifting up your son

  10. Susie,

    He looks like such a sweet baby. Dave and I are standing with you and Matt in prayer, you are totally right, God can do ANYTHING!We think and pray for you guys all the time. I wish I could give you a big hug, I am proud of you Susie.

    Love you,

  11. I followed your link from the Bowes Family (friends of mine)- hope you don't mind my reading along. What was especially inspiring about your story for me, is just the birth itself - man, if you were in the USA, they would have scheduled a C-section. Oh, I'm sure you've heard about the new movie, "the business of being born" - I am so happy for you that you were able to deliver your baby and have a good (of course I mean that relatively - I've given birth, and it's no picnic)birth experience. I know that given your limited time with Joshua, every moment counts, especially the bonding you got to have with him through labor.

  12. Hi Sams Family,

    Found your link through Bowes Family. Joshua is gorgeous. I have to say I love his ears too especially the cute little fold.

    Our thoughts and prayers are with you all. Your blog radiates strength and love.

    Take care,

  13. I've been a lurker for a few weeks now after I stumbled upon your blog from another site, and I was so happy to come to your blog today and see an update that Joshua is here and doing so well. You guys have been in my prayers, and I will continue to pray. I am definitely a believer in miracles, and I'm continuing to pray for one for Joshua. You have a beautiful little family there =)

    I also have my mom and her bible study and my diabetic support group praying for you guys!

  14. I heard about your blog from my may 2007 mommys group on babyfit and I feel myself compelled to check in on you every day since. Your strength as a mother and as a family continue to astound me daily. I am so overjoyed that the lord has chosen to give you this time with Joshua that you never thought possible . Yet my heart breaks for you at the thought of losing your beautiful little boy someday...hopefully the lord has more miracles in store for him. I myself am a mother of 3 little boys 5,2,and 8 months- Im 25. and I dont know where you find such strength. Your an amazing mother and I will continue to pray for that little miracle of yours and I'll keep checking back everyday. Elisha

  15. I love the close-ups of Joshua's ear and nose and lips!!!