Oct 6, 2011

{day three + sweet man's little face}















Just a quick picture of our sweet boy after surgery - actually its a still from a video we we were taking of him.

He's a bit taped & wired up & they shaved off some of his pretty hair - but he is beautiful still.
Sorry we haven't really been keeping everyone in the loop. We've been totally without techie tools the past few days. No fancy phones or cameras or laptops until super recently. I don't think we totally totally thought thru the fact that we wouldn't be home for quite awhile. So thank you dad for letting us steal your laptop :)

Okay, so here is whats going on with our little son.

All in all, we are really encouraged today. Its nice to have yesterday behind us & to be over a little hurdle. It seems as though everything that they've found with Isaac - both things that we were expecting & things we weren't, are so far on the better side of what they could be. The one major thing we still don't know much about - & probably won't really realistically for awhile is how the fluid in his brain is going to affect him as he gets older - we'll just have to be patient while he heals & grows.

So {somewhat} quickly & simply, so far this is what is going on:

-the hydrocephalus {fluid in brain} is slowly being drained now. One of the surgeries yesterday - the latter one, was putting a VAD just under the skin on top of his head. {from what we can understand} its about the size of a large coat buton & they are going to manually drain the fluid from there for now. That was kind of different from what we originally had talked about. Originally they were going to insert a shunt, which is a tube that connects from his head down to his stomach & his body would absorb the fluid that way. The reason this didn't happen was because...

-Isaac was actually born with an imperforate anus, which just means that his little bottom hole isn't there. So that was kinda shocking, but actually made sense with some of the ultrasounds that we had seen problems with his bowels in. That was surgery number one, & it went really well, but because all of his tummy area is kind of tender right now so they're not wanting to route any tubes down there just yet - hence the VAD. So back to the bowel stuff - right now they have just re-routed everything temporarily to a little sack on the outside of his tummy, but in the next few months they'll do another surgery & then another or two over time & can get everything all fixed up for him & working. It apparently isn't a super uncommon thing...& surgery went really well it seems like. We're still waiting to make sure everything healed up & is working as it should - but it sounds like it all went really well!There could have been a lot more complications with his kidneys, bowels & intestines, but all of those are looking okay :)

a few other more minor things that we'll just have to watch are:

-his missing radius bones {one of the two bones in the lower arm, that connect from the elbow to wrist} he is actually missing both of his thumbs too. it's actually really really cute looking having his hands curled up. & we kind of didn't notice the thumbs until a nurse told us. we talked with an orthopedic surgeon & the only action we're taking right now is getting him little stretchers for his arms/hands & in a year or two they can do a surgery that takes one of his fingers & makes it an opposable thumb, so he really should be able to do just about everything with them that anyone else would.

-his kidneys are fused together. & both on the left side. super bizarre, but they're functioning just fine! so we'll have to have them checked out every once in awhile just to make sure things are working right, but they're great so far.

he has a touch of jaundice, so we've been saying he's in his tanning bed all day today. they have a little pair of goggles for him, too.

& he's got scoliosis in his upper spine...like his daddy :)

he's been pretty sedated for a lot of the day today still - recoving from his big day yesterday.
but even so it was our best day with him yet, even though we didn't get to hold him. he is so strong & so many people have been holding him up in prayer, its no wonder he's been such a little trooper - & he's getting some good books read to him in the meantime :)

i know everything is crazy/technical but we know that hardly anyone really knows what's going on yet. so that is basically it!

we're still believing that God gave us this little man to take care of & love & He can still perfectly heal his little body. but no matter what, he is perfect to us.

Love,
the Colemans

33 comments:

  1. He is so beautiful! Always praying for your sweet boy. Sounds like he has already been through a lot in his few days of life. Oh the things Father does to bring glory to Himself. He is so good!

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  2. Isaac is absolutely beautiful, and the poor darling has already been through so much. He's tough though, and all of you can handle it. I can't wait to see him as he grows and as all of you grow as a family. He is truly a blessing and I know he was given to you for the best reasons.

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  3. How precious to finally get a glimpse of little I, his skin looks so soft and delicious :) I have no doubt he will continue to grow into a fine little man because he has such devoted parents and such a loving God. Blessings on you three xx

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  4. How sweet is baby Isaac!!! Congrats on your beautiful baby boy!! You know years ago when I was a little girl a friend of my mom gave birth to a down syndrome baby girl. I was very blessed to be one of the first to hold little Desi and to me she was perfect. I remember sitting on the bed holding this tiny little thing in my own tiny arms and hearing my mom say to her mommy that God give special children to special parents. He chooses them by hand because He knows that He has given them their own built in "tool box" to deal with each need that their child has. I've never forgotten that. I do believe that God only blesses those children with special needs to parents who have the right "tool box"!! I believe that God has given you the right tools to deal with all of Isaac's challenges and from your email I can tell that you are doing so already. May God continue to bless you, continue to provide you with strength and comfort and may the Great Physician continue to heal Isaac. I am praying for you!

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  5. I know you don't really know me, but I live with Cait and Ashleigh Butt. We have all been praying for Isaac and for both of you. He is absolute gorgeous! Praying for grace, strength, healing, and wisdom for all of you!

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  6. beautiful baby! congratulations! do you have any time frame that you might be able to come home?

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  7. Yes, our sovereign Creator has given to you sweet little baby Isaac...to take care of and love. And you two are the perfect parents for him to have. Praying that God's peace the passes all medical, human understanding will guard your hearts and minds. That God's hand will be a reassuring touch to sweet baby Isaac. That God will use this for His glory and renown. That you two will draw closer to each other and closer to Him!!! And that you will be able to hold your precious little man soon!!! :-)

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  8. Oh, he is so lovely! All y'all are in my prayers.

    In the picture it looks like the sticker holding the tube (I think?) on his tummy is in the shape of a heart! Quite perfect, I think. This little guy is loved by so many people, even strangers. You're so blessed. Hopefully, you can be bringing little Isaac home soon.

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  9. What a sweet, wonderful, beautiful gift God has given you. Cherish him.

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  10. He's beautiful. Father, love on the Coleman family and sweet Isaac today. Thank You that You are the One Who makes all things new!

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  11. He's precious, Mindy! Continuing to pray for you all throughout each day. I know God has a special plan for this sweet boy, and we can't wait to watch it unfold. You guys will be the perfect parents for him! Love you all, Juli

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  12. Congratulations on your beautiful baby boy! I will continue to keep your family in my prayers and pray for that little trooper of yours!

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  13. What a miracle.....he is such a trooper! And so are you and Daniel. Praying for you guys throughout the day and will continue to do so in the days to come. May the Father pour out strength and grace for all three of you.

    "You keep him in perfect peace whose mind is stayed on you, because he trusts in you." Isaiah 26:3

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  14. I don't comment much, but I feel blessed to have been following your journey since you found out you were pregnant, to now. Isaac is absolutely perfect and precious. Here is to our creator, who keeps his promises. I can't wait to see what He continues to do through you as parents, and Isaac as your son. I think you're blessed both ways. I admire your positive, faith-filled post. Praying over your sweet son.

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  15. He's perfect. Congratulations you two :)

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  16. oh, he is so beautiful! your faith & strength through this is so inspiring!! no matter what God has a perfect plan for your sweet family! :)

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  17. he is perfect in every way! Isaac is constantly in my prayers. :)

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  18. Can this baby get any more beautiful?! He is absolutely gorgeous! I'm praying for you, Daniel and baby Isaac! My dad was born with all of his organs on the wrong side, so his kidney is also on the left side, his heart is on the right side, etc. but he's been living healthy all these years! I love lots Mindy and I will continue to pray for little Isaac! A big big hug to you and the baby!

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  19. He is gorgeous. And for all that has been going on, your family seems calm and centered. God is good, and isaac is perfect in that he's here and he's yours. Congrats!

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  20. What a beautiful baby boy! We have been praying for you all and will continue as God uses your little boy to bring glory to Himself! Congratulations!

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  21. He is so lucky to have parents like you two. He is perfect.

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  22. Tears in my eyes reading this and looking at his handsome face looking so peaceful! So happy he's doing great, will continue to lift ya all up in prayer! Congratulations, you're so blessed!!

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  23. Congratulations on his arrival and things being better than expected (thank you, Jesus!) - I'll continue to say a little prayer for ya'll when you cross my mind. So exciting that you finally get to hold little baby Isaac - I'm only 23 weeks along and I already cannot wait to hold my wee ones!

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  24. Awwww, he is beautiful!!! Keeping you 3 in my prayers. Congrats again!

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  25. He is beautiful and perfectly made by his Creator. Bless you as you navigate this world of special needs parenting. It is a gift!

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  26. Congratulations! He is amazing. You are already wonderful, wonderful parents. God bless your beautifully sweet family!

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  27. So glad that he is doing well with all the surgeries. I'm sure that God has some awesome plans for this little man.

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  28. Isaac...What a beautiful name. Praying for you, guys.

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  29. perfect is right! I love him already and it is precious to see your mommy and daddy love for him. I know it has been exhausting but I can feel the love and excitement in your words. What a privilege to have this special son to steward. And how thankful I am that God chose such loving parents to raise him. The Harrises will continue to pray in the days and months and years ahead!

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  30. That beautiful little boy is so lucky to have you as his momma:)... I can just FEEL the love you have for him and its so, so beautiful to see! I will be keeping up with this journey & pray all things will continue to improve in every way:):)

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  31. Your blog was shared on a friend's post. I don't know you, but have felt an instant connection for your love, devotion and dedication to each other and the new baby son that God has given you. I think God is going to do great things in your lives. This little child has already touched many lives and brought people closer to God. What a testimony he already has.. . a beautiful miracle of life and love.

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  32. I am SO SO impressed with your faith in God. Praying for you and your brave little man. You all are such a testimony of faith.

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