Thursday, March 13, 2008

Day 67


Joshua is still with us. I guess he thought that since he'd defied the odds thus far, he had to go out in a blaze of glory.
It's been 19 hours since his cele ruptured and emptied. He's had countless small seizures and has stopped eating/swallowing.
But he's still here. We thought it was all over yesterday when these pictures were taken. But instead he stayed with us. We stayed up till 1am when exhaustion got the better of us.


He slept between us in our bed and we woke up a number of times to touch him and check his breathing. His breathing changes a lot, but his heartbeat is strong and consistant.


His face looks different now because his skin's not pulled so tight. Our camera is getting a lot of use. These pictures were taken by our nurse Heather on the Olympus that was sent to us. Our Canon still has to be set up for download, so we'll post more as we go. I'm so proud of him - he's definitely strong and courageous.
We don't know what's next. Seriously, this was unforseen - that he'd last so long. We thought he'd go within an hour or two. But 19 hours later...

Please pray for us as we continue to hold him and kiss him. Thank you for all your prayers.
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66 comments:

  1. Praise God! I've been refreshing your blog all day. I'm glad your getting so much time with him.

    Praying for you lots!

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  2. Susie, every time I check your blog I hold my breath in fear. But low and behold...what a strong boy you have! I am so happy you all have this time to cherish with him. I am praying for your family during this difficult time. May God bring you strength and comfort.

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  3. Still praying...

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  4. I posted earlier, I'm still praying for you all. Please hold him tight! Give him a kiss for me. Give Oceana one too! They are our precious gifts from God.

    Debbie Lionberger
    Illinois, USA

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  5. Beautiful, strong Joshua - you continue to amaze the world! Your momma is right - you do look a bit different than before. You and your big sister look even more alike now! And I just commented yesterday on how many hits your blog is getting. In one day, you've gotten over 7,000 more! Simply amazing!

    Still praying in Bellingham,
    Nicci

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  6. what great pictures - he looks so much like you Susie! we are praying for you!
    John & Anna

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  7. Oh praise the Lord! Praise the Lord! What a little fighter! The captain fighting the storm! Praying for you all and have been non stop thinking of you! Cherish every moment, I know that you are!

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  8. We continue to pray for you here in MI (USA). I have followed your journey for a while now and have prayed for peace and comfort for each of you during these difficult days. Thank you for sharing your incredible journey with us as well as the precious time you've had with Joshua. May you be richly blessed even more!
    Becky

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  9. I am so glad to hear that the LORD has granted you more time with your sweet little boy!
    He is such a cutie, and at least in the pictures he looks pretty pink, so I guess he is not in any kind of respiratory distress. I pray that he is comfortable for as long as GOD wants him to be with you.
    Be blessed and peace be with you!
    Love
    Dagmar

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  10. Glory!!!

    Glad to hear he is with you still. Take lots of pictures and capture every moment. And thanks for updating us. We are all thinking and praying for your time with him.

    Blessings-
    Chelle'

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  11. Wow...what an amazing little guy. He has gorgeous chubby cheeks! Praying for you guys.

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  12. Christina Taylor and familyMarch 13, 2008 at 4:43 PM

    he looks sooo beautiful and happy being held by his mummy.... we are soo proud of your little captain! His name is soo perfect, from now till forever, everytime i will meet a Joahua, i will secretly think.. "are you as strong and courageous as a little boy i once knew??" OUR Joshua has set a standard... we wish we were there veryy badly. We are ready to come at the drop of a hat, just let us know. We love you all and are praying for your home to be filled with joy, love and everlasting memories...

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  13. I'm inspired by your courageous son and his admirable parents who chose God's will for his life.
    Prayers and love from Texas.

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  14. what a beautiful strong little boy... his face looks so chubby now :-) Only God knows where it goes from here but my prayers are still with you, Thankyou for taking the time to update us in the midst of this tough time
    Elisha Canada

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  15. Susie,
    We are thinking of you all constantly, and we are praying for you. Joshua is truly a little miracle and has made such a massive impact on the world, for such a little person. He looks so handsome in the pictures - you can really see his chubby little cheeks now all the tension has gone from his skin. Hoping Joshua stays really comfortable and pain-free, and that you are able to make the most of every miraculous minute - people across the globe are holding your family close to their hearts. With much love. XXX

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  16. What a beautiful, strong and blessed little boy he is. I am praying for him, and my heart is aching for you and your family. I am so thankful that you have more time with your precious son.

    You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. -Eleanor Roosevelt

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  17. I have been thinking of you all so much. I have been following your blog since before Joshua was born. I want to thank you for letting us all, mostly strangers, into your world as you deal with someting so personal and special.

    Joshua is such a beautiful baby. He looks so peaceful and content in these pictures.

    I don't know you, but I was friends with Heather, Matt's sister, in high school.

    Please know that there are lots and lots of people out here thinking and praying for you all.
    ~Chrissy

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  18. What a beautiful face he has, he looks like his mommy. Poor angel.

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  19. Give him hugs and kisses from Gramma and Grampa. We love you!

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  20. He is a strong boy surrounded by love and a family of faith and strength.

    You are in our prayers from Illinois.

    AJ

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  21. I am praying. Many tears for you and your heart. You have shown amazing strength and courage and so it is only right that your son would have gotten that from you! What a sweet darling little boy. He is so loved. As are you. I continue to hold you up to the Lord for Him to carry you through this time. How awesome to know the Lord holds Joshua in His hands.
    Love, Michelle

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  22. Praise God for giving this time of 19 hours and counting to you. His plan is absolutely amazing to me and the strength little Joshua has. He is truly a miracle that is humbling my heart to tears. I am praying for these hours, however many you are gifted with, to be blessed and full of His peace. Asking Him to hold your hearts in His, as no amount of days will ever prepare for the time of letting go. There is only getting through in the One who will lift him gently when the time comes. I pray you feel Jesus's hands touch yours when this time comes. God Bless your family.

    Love and Prayers, Laurie in Ca.

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  23. Wow!

    I look forward to whatever photos and memories you wish to share with us.

    He's amazing. As a previous commenter said... I wonder what's going on inside Joshua. If he is experiencing the world differently? His work here must not be finished yet.

    We'll keep praying.

    Rebecca

    P.S. I think it's 9:53 a.m. (Friday) there. It's 4:43 p.m. (Thursday) here. Since noon "my" time, you've had more than 4,000 visits. I wish I'd thought to look when I came in at 7 a.m. "my" time.

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  24. Tears, but unimaginable respect for such a fierce, feisty little man.

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  25. I am praying for your family in this difficult time. You are all so strong and deserve to be blessed with a lifetime of wonderful memories of sweet baby Joshua.

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  26. Lovingly bearing you up in paryer.

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  27. What an amazing little boy. You are all in my prayers.

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  28. Our thoughts are with you and your beautiful family.

    Cat from Australia

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  29. Dear Susie,
    I, as so many, do not know quite what to say at this time. You and your family are and have been in my prayers so much. I can't fathom what you are going through, but you have been a witness throughout to so many. Last night you crossed my mind and I hadn't read yet that Joshua's 'cele had ruptured. There was a particular quote that I thought of that made me think of you. It is from the Beth Moore study on Daniel. When my son was in the hospital it was such a comfort to me as it still is.
    "Beloved, if you and I could see the whole picture surrounding our own historical events, we'd go face to the ground in startling amazement. Imagine Christ saying to you one day in glory, "Take a look at this scene with me, Child. I want you to see what was going on in the heavens when you were going through that crisis. Look at all that happened in your behalf. Gaze at that great cloud of witnesses cheering you on to victory. Now aren't you glad you chose to walk by faith and believe Me?"
    Just think, not only are there people all over this world praying for you and your family during this, but there is a "great cloud of witnesses" in the heavens that is doing the same.
    Again, you and your family are in my prayers, and I pray in particular for peace and comfort for Joshua as he is surrounded by you love.
    darcy

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  30. Matt & Susie,
    What a blessing this blog is. I am going to read the whole thing. I just wanted to let you know that I am praying for you guys! My husband & I lost our firstborn, a son, Gabriel, to anencephly almost 3 years ago. He was with us for only moments after birth. So, this is precious to read about the life of your little Joshua.
    God bless you guys!

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  31. Just wanted to express my sincere well wishes and prayers for Joshua and your family.

    -Lake Zurich, IL

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  32. Hey, Matt,Susie, Oceana, Joshua and the rest of your family.
    I tried to post last night but it would not work.

    I wish someone had the words to make this time easier on you all but all we can say is our thoughts and prayers are with you and your family. I thank the Lord that you know His love and that Joshua will, in His timing, be in His hands. May you enjoy whatever time you have with Joshua.
    Love to you all
    Rae

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  33. Amazing. 19 hours just amazing. I've been thinking and praying for you all day.

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  34. Wow what an incredible miracle. What a mighty God we serve! Continuing to lift your family in prayer.

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  35. Dear Susie,
    My name is Natalie. I live in Atlanta, Georgia. A friend of mine sent me the link to your blog about your family and your sweet boy, Joshua. I just wanted to let you know that I have read your blog and I can see the love you have for you children and I am just heart broken for you all as you deal with Joshua's condition. He is such an angel and I can't imagine the rollercoaster of emotion that you must feel each and every day. When you described being afraid to wake up and go check on him...it just breaks my heart.

    I wanted to share this scripture with you though in hopes that it might encourage you a bit. I am also a Christian and know that our God is bigger than anything that is thrown our way.

    "Do not fear, you are mine. When you go through the fire, I will be with you." Isaiah 43:1-2

    God bless you guys. I will pray for your darling son and your family.

    Big hugs,
    Natalie Lomas

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  36. I found this blog through a friend and wanted to say that my heart breaks for your situation. You will be richly blessed in heaven and I am amazed at your strength. Words fail me, but your family is in my prayers *hugs*

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  37. How wonderful that he is still here, getting cuddles and kisses and free from the weight that was his head. He must feel light as a bird right now, soaring free. No matter how much longer he is here with you, it's wonderful that he got to experience life without the heavy encephalocele.

    My heart goes out to all of you.

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  38. His cheeks look so chubby in the last photo! You certainly did a great job with the breastfeeding / bottle feeding with breast milk. Kudos to you -- his strength has come from you (and from God). Blessings to you all.

    UNC NICU RN

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  39. You all have remained in my prayers throughout this day. I will continue to lift you before the Throne of Grace.

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  40. I'm so glad you took the time to update us during this difficult time. Every time I thought of you guys today, I prayed! (I thought of you alot!) Enjoy your precious time with your little guy!

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  41. With his face relaxed, he looks so much like your daughter. You and your family, especially little Joshua, are in my prayers.

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  42. What a miracle you've been given more time.

    You all are in my prayers.

    May the Holy Spirit be with you and the ultimate comforter hold you in His arms today.

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  43. These photos are precious. You're in my thoughts & prayers right now. Rest in God, put your trust in HIM, HE will help you and Joshua through this. "I lift up my eyes to the hills - where does my help come from? My help comes from the LORD, the Maker of heaven and earth." Psalm 121.
    Andrea (Canada)

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  44. I stayed up ridiculously late myself, refreshing your page for an update... What a thing to read after I woke up!

    What a little trooper! I have no other words. I will pray for you all day.

    Enjoy your time as much as you can. You are loved world over, we are storming heaven on your behalf.

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  45. Hello, I have been reading your blog for a while now, I am praying for you, and so have my husband and others at work, and others that I have told. We are all praying for you... (I am in Cali by the way, so you are across the US) I don't understand what you are feeling, but I know that my heart was crushed when I have read the latest news. I knew I had to say something to offer you guys some support. To let you know, that you aren't alone in this. You and you're family are loved by us all, little Joshua is a strong little man. He has more strength than I have ever known. :) Continuing to pray for you all!

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  46. I just found out about your family today through a friend and have been reading your blog. My heart and prayers go out to all of you during this difficult time. What a blessing you have!! Thank God you've had the time with him that you have and that he's still here with you! He is so lucky to have a wonderful family surrounding him and caring for him. He was sent to you for a reason and is still here with you for a reason. God's blessings upon all of you. I will continue to follow your family through your blog and will keep all of you in my prayers. I pray that you all have the strength and courage that your precious little guy has had through all of this.

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  47. AAAAAAH!Yay!
    I'm so excited! I have been praying all day(not exaggerating!) and waiting for your next post!
    The pictures are amazing. To you they might represent what you see as imminent pain and grief, but if you ask me...he looks great! God is working on Joshua's body right before the eyes of the entire world!


    Joshua needs you to stand strong and not give up hope! God has come through on his behalf! The fact that he is still breathing means that God has His hand on him.

    "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."
    Rom. 8:28

    "And my God will meet all your needs according to his glorious riches in Christ Jesus."
    Phil 4:19

    I'm praying that he will regain his appetite soon.

    Love and much prayers!
    -Deborah Powell

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  48. Susie, Please know Joshua and the rest of your family are in my prayers. I check in daily with you guys and have walked daily (from afar) with you in prayer.
    We don't know eachother but know that I love you and your family. May Jesus bring you peace and Joshua relief.
    Your sister in Christ,
    Danielle Harnsberry

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  49. Susie and Matt, I'm Michele Walsh...my parents and Dennis and Pam are good friends. They directed me to your blog when Joshua was about 5 weeks old and I've been reading it and praying for you ever since. Please know that I'm praying and am specifically praying that you will feel God's arms wrapped tight around you during this time. Michele

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  50. He is as beautiful as ever Susie. I love all the photos. Praying for you all!

    ~Heather~
    goofygirl03

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  51. Wow! That is all I can say. I was checking for updates alllll day and fearing the worst. I am in total shock. Joshua is a fighter for sure and he continues to amaze the world. I know there are so many people praying for him and I have said many prayers myself today as well. They must be working because he is still here. He looks beautiful in those pictures. There is a new softness about his face. May God continue to give you and Matt strength to get through what is to come.

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  52. What an amazing God we serve. Thank you for blessing us with this update, Susie. Have been praying for you ALL DAY. That you are getting SO much "extra" time with Joshua....it just brings me to tears on so many levels. The photos you are getting are just breathtaking. What a beauty he is. Christ is good. We praise Him for Joshua!

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  53. My prayers are with you tonight.

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  54. I LOVE this third picture of the two of you. Joshua looks like he's smiling. And the first picture on Mar. 14 shows his gorgeous hair. It looks like he's got your hair.

    I can see the strain on his little body, in his eyes and hands, but he looks pain-free and peaceful, which must be such a relief for you.

    Who would have imagined you'd have all this "bonus" time with him!?

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  55. my heart is hurting for you and my eyes are welling up. oh susie i'm so sorry you have to go through this but you are doing it with such incredible grace.

    Thinking of you,
    Mary

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  56. A friend sent me the link to your blog. My heart and soul prays for you and your little angel.

    May God keep you all close during this blessed yet horrendous time. Hold him, love him and remember him.

    Joshua will be with you always, whether on earth or from Heaven.

    He is truly beautiful and you are one of the strongest women I have ever come across. God bless you. I wish I could do more.

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  57. I happened upon your blog, via another blog, a little while ago. Your strength and courage has been amazing! May the Lord continue to bless you all while Joshua is still with you and when he departs to a new life free from any pain or discomfort.

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  58. Amazing...truly amazing. Continuing to pray for you all!

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  59. >sigh< I've been unable to be online all day, and all I've thought about is Joshua--and you! Imagine my delight when I see you're still enjoying some time with him, and he is still comfortable. May every last second of his life be peaceful and in the comfort of your arms.

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  60. Your family has truly touched my heart. I am praying for you here in Illinois. What a beautiful little face. what a strong soul. Praying for his strength to stay w/ you all. God bless you

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  61. I thought about Joshua all throughout the day today.
    Praying the Angel's praises of God's glory for allowing us in this exile to witness Joshua's courage and strength as a testimony to the goodness of God reaches your ears and stays in your heart until you meet your son again in Heaven.

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  62. Susie,

    My prayers are with you and your family at this time. Little Joshua is such an inspiration and living testimony of our AWESOME God!!! You have shown your love for Christ in all that you do and also the love for your precious son. May you know that God is right beside you and His arms are holding tight to whatever the next moments bring. Praise God for such a precious life as Joshua's.

    In Christina Love

    Sonja, Florida

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  63. He looks so peaceful. Just like a little angel. Such sweet photos. Thanks for sharing. Sending lots of prayers and love your way.

    Kelly
    mommytojohn, twosweetpeas

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  64. Your son is beautiful and the love you have for him is just as beautiful. Thank you for letting us catch a glimpse of Heaven today.

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  65. Please see Joshua's site, he passed away this am. My thoughts and prayers are with Joshua and his family.

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