Monday, January 14, 2008

Day 8

Joshua's still with us. And he's one week old. He's had a few more visitors over the last few days. It's so exciting to get to show off a little man when you never thought you could. His breathing is scaring us a lot though. The aforementioned hiccup/burp/sneeze thing seems to be happening all the time now. He has a cold - a very stuffed up nose - which is strange since it's not cold, he's almost always bundled up, barely anyone but Matt and I hold him, and his sister hasn't got a cold. But he's really congested - so it seems that if we syringe his nose (OH MY GOODNESS THAT'LL MAKE YOU FEEL MEAN!) he does much better. Then he can sleep without sounding like he's gasping.
When I fed him at four, his breathing got really strange. So I sat up in bed to hold him for a little while, and woke up 3 hours later with him still securely on my chest. Matt said his breathing stayed good the whole time he was on my chest. While I'll do anything to help him breathe, I hope sitting up all night doesn't become a normal occurance. Please pray with us that his breathing and cold smooth out.
Joshua loves his Daddy. It must be the wife in me - this melts my heart....
There's nothing like hearing, "Love you, Buddy" as Matt gives him kisses before we lay him down.
Ok, I have to stop typing this - it's making me choke up.

Just like I promised, I made Joshua a cake, because it's his birthday. As we sang him happy birthday he got a half-smile (probably just gas) on his face - and made us all crack up. It seems silly to make him a birthday cake, but like I told him, he got some in the middle of the night when he ate. It's my Mommy-Job to make sure he gets his birthday cake. Down the hatch goes the cake!
Like I said the other day, his stump fell off. He has the funniest belly-button as you can see. My brother keeps asking if it'll "recede". I don't know Josiah.... I don't know.... But this was such a little miracle in itself - that we got to watch him grow for a whole weeks, get excited when we opened his sleeper one morning and discovered his stump. How amazing.... Each extra moment with him is a miracle. A very precious one.

Please continue to pray with us
**For Joshua's cele. That it will continue not leaking, that it will not become infected, and that we are able to keep it safe.
**For Joshua's breathing and cold
**For Joshua's circulation. Some days his hands turn greyish and his color gets strange. I'm pretty sure it's because of the weight on his encephalocele. I think there must be veins that have too much weight on them, because when we pick him up and change his position, his color returns to pink.
**For my recovery. I'm off to the doctor's this afternoon to sort some stuff out. Ouch.
**For our souls and spirits. It's getting very emotional for me especially. At any moment I burst into tears - and all I can think about is ::what's to come::. I hate dwelling on losing Joshua - but it's always there in the not-so-back-of-my-mind.
**For Mom Sams (Pam) as she flies home tomorrow. It has been absolutely wonderful to have her here, and it's especially sad to see her go.

The pictures may be fewer in coming over the next few days, as we're getting close to going over our download limit for the month. But rest assured, pictures will still come.
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  1. thinking of you & praying for Joshua pretty much every minute of my day.

  2. Can you elevate the head of his bed/bassinet with rolled blankets? You can roll a towel and make a "U" shape and settle his bum on the bottom of the U to keep him from sliding down. My kids with reflux always got congested with laying flat.


  3. I'll be praying.

    If you can send photos by e-mail without "penalty" against your monthly quota, I'd be happy to upload them to my Flickr page. They'd be public -- available to everyone on the Internet -- but I'd be happy to help.

    Others have suggested Photobucket, etc. They might be able to give more specific instructions on that one.

  4. Susie, the doctors are not giving you any hope at all? It is killing me they have to be able to do something to make the situation better?! What are they telling you?

    Pray God gives the doctors wisdom!! MUCH WISDOM!

    Stay strong

  5. Continued prayers and support from California.
    "On the Hiccups day 8" blogpost you said,"We're not amazing - please believe me when I say - we have our own issues, we have our own hang-ups. We're just trying not to drown in this. We're trying not to blame God (it's not His fault, but our finite minds try to make it His). We're trying to keep our heads above water." It is a very humble statement that reminds me of a heartbreaking but beautiful story I once read. It was an insert in a paper about food for the poor. A small village of people lived in a part of their country in very small wooden hut without electricity, heat or plumbing, that flooded quite regularly and was getting worse, because of Government, economic ..ect. restrictions the majority of these people had to stay.One night flood waters came on so fast that the people had no time except to grab their children and flee for their lives. The water got so deep the fathers and mother had to carry their children on thier backs and shoulders all through a pitch black night sky. All the villagers formed a human chain of voices calling out to each other on this night leading each one of the villagers to the safety of higher ground. They all worked together.
    Your family's trust in the Lord is showing a lot of people the way to higher ground. They are praying for you, trusting in God, and thanking Him for little Joshua, such a big blessing in such a little and humble package.
    -Take up my yoke upon you, and learn of me, because I am meek, and humble of heart: and you shall find rest to your souls. It seems joshua is already a little missionary. He likes to show us exactly how to be like his King.
    God Bless you!

  6. Dear Susan and Matt & family:
    You don't know me... I've lost touch with your Dad over the years. I just received a link to your blog from your Uncle Joe. My name is Dave Lavoie from Laconia, NH and your Dad and I were prayer partners once in another life. Having said that by way of introduction please know that I will pray for Joshua and for your family and encourage my family members to do the same.
    It's hard sometimes to know how to react when your circumstances go so completely out of your control. I rejoice with you for every day that you have with Joshua. You may never know this side of heaven all that God has done in this situation. Be assured that God is definitely in control here. We were blessed with another grandson on Dec. 3rd and I can't imagine being so uncertain of his future. I can imagine that the emotional roller-coaster must be in full motion every day. I pray that you and Matt will find rest in your hearts as you spend precious moments here and there with the Lord. For Joshua, I pray God's will be done and in His timing. (Since I don't know any other way to pray for him, and I know that God does have a plan for him and you too.) I pray for peace within your family as you give each moment of each day over to Him and He gives you beauty for ashes and a garment of praise for a spirit of heaviness.

    Please give my love to your parents and help me to connect with them again.

    Your's in Jesus,

    Dave and Cindy Lavoie & family

  7. Christina taylor & famJanuary 14, 2008 at 8:04 PM

    beautiful, beautiful, beautiful.... those pictures were heart warming.. i love his belly button.... good excuse on the cake momma.. yup, it truly was your duty to eat it so he could get some in the night, hahahahaha... I wish i could use that excuse, darn! ((ps, thanks for letting my obsession be filled today, i mean i checked and check all day, and phew finally a new blog!!, hahaha.... sick, truly sick ; )

  8. this post hit me a little harder - i feel like i am taking a journey with you, only from the outside (sounds silly, i know).

    you will remain in my prayers.

    please take care of yourself and know that hugs and kisses are being sent from texas.

    (babyfit nov 05)

  9. Happy one week birthday to Joshua!!! I had a dream last night that I got to hold him...I was showing off my nephew to made me very happy. Please give him a great big kiss from me.
    Love Aunt Heather

  10. I just wanted to let you know that hiccups/sneezing thing is the way a newborns nervous system organizes itself.

    Beth and Abigail
    in NC

  11. Susie, I've been wanting to ask (and I hope this doesn't overstep any boundaries - obviously don't answer if it does!) - how is Oceana coping? Does she understand that Joshua's time with you as a family may be limited? Or is she too young to really understand and grasp what's going on?
    Still thinking about you guys daily.

  12. That picture with his daddy is probably the sweetest thing I have ever seen. Ever.

    I am so smitten with Joshua and I've never even met you guys. :-)

    ~Quaker Rose

  13. That has to be the cutest little belly button I have ever seen!! =) I pray that his breathing gets better! When my son was a month old he was hospitalized due to was scary. I know what your going through in that aspect. He slept in his carseat forever it seemed so I could keep him proped up and breathing easier. I pray you can find a safe way to make it easier for him...I know it is hard with his condition. I will continue keeping him and your family in my prayers! God Bless!

  14. Congratulations on Joshy's 1 week birthday!

  15. I'm still reading and praying for you all. That picture of Matt and Joshua just melted my heart. SO glad that you all will have so many happy, sweet memories with Joshua. Blessings to everyone!


  16. What a hadnsome boy he is. I'm glad you have this blog so we can keeping hearing about how Joshua is. Even if you can't post pictures (I understand the limit - we have the same issue in Kenya) PLEASE keep writing and letting us know how Joshua is doing and of course you and matt and oceana. Still praying!

  17. The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, h will rejoice over you with singing.
    ~ Zephaniah 3:17
    Much love and prayers to ya'll. Joshua truly is beautiful!

    luv ya!

  18. What a miracle and gift! That pic of Matt with Joshua made me cry. It is so sweet! I knew from the first time I met him that he'd make a great daddy someday. He's got some lucky kids to have such wonderful parents.

    I've heard (though I've never tried it) that breastmilk...a few drops in the nostrils will help to clear up the congestion. Hope he feels better.

    In my prayers,

    Debbie Seiders

  19. Happy Birthday Joshua! We pray that you celebrate many many more precious milestones! Much love!! The Heagys