6.14.2010

Cohen turns a week old :)

[real quick, someone mentioned spam popping up..yucky spam..on my blog..I don't get any of that since I have a Mac, but if you are seeing any of that, will you let me know?}

What a week.

{notice, I put the post time for exactly 8:55am..that's when he was born a week ago.}

I did a post HERE early Sunday morning as a refresher of what Cohen has been going through all week. As of today, he is one week old. As of Saturday, he had gone through 4 surgeries in just 5 days. As of Sunday(yesterday), he has gone through 5 surgeries in 6 days. Yesterday seemed to be scariest because they told us basically he was on the edge.

They really wanted to find what they were looking/hoping for.

Well, they didn't find it. It wasn't there....what they were looking for.

Where do they go from here? They being the doctors. We still have faith they are the best.

I can't even tell you what all the doctor who did the heart cath today told us. It was true stuff but it was scary stuff. Life and death stuff. Not easy stuff to hear.

First of all, I know some of our nurses read this blog...As I've mentioned before, I know I'm not the best at writing all these terms and explaining them. I understand what I hear but as far as getting everything out verbally or on the blog, I'm not always the greatest. I'm a good listener. Anyways, if you see where I'm wrong on a term or something I'm saying, I'd love for you to tell me so I can correct it ;)

Cohen has been having high levels of lactic acid. This can also be called acidosis. To read more about lactic acid you can go HERE. So, it has to do with blood flow. Acidosis leads to the risk of sepsis, which is an infection in the blood.

So, yesterday doctors began trying extra hard to figure out the cause. Cohen had a procedure done on his esophagus to determine if there was a tear or leak somewhere within the esophagus or tummy that could have been causing or elevating this lactic acid levels. They found nothing there. They then decided to go in for a second heart cath.

Heart caths are hard because of the dye they use. It is not good for the kidneys. Pray his kidneys and livers are strong because he has had two heart caths in 6 days.

This heart cath was an extensive one compared to his first. So, double the dye :( It was one that made the doctors nervous to do on him since he had been through so much, but it was a measure they had to take in order to determine if the blood flow from the heart was over pumping and causing the acidosis. Perhaps an extra collateral artery. Well, there were no missed collateral. The good thing found in this heart cath, everything was working properly with the heart. Prayers are being answered with his little heart!!! You guys have been saying them since mid February and we can't thank you enough.

However, they are dumbfounded as to what is causing the acidosis. There are TONS of things that could have actually caused this...but for some reason, they aren't showing up in his labs, cultures, tests, etc. The doctor said that Cohen has had so many "insults" (surgeries, procedures, CARDIAC ARREST, etc) this week that there is a number of things that could be causing it. But why aren't they showing up to indicate where it's coming from? (specific prayer!) There are lots of infections that could be causing this. Once again, not showing up. The cardiac arrest really set him back the doctors have straight out told us. As for the "insults", they were all things that had to be done in order for Cohen to have probably made it through this week. There is nothing we have done, there is nothing the doctors have done...to cause this.

He needs time. He needs time to heal and time for them to figure out what is going on. The sucky thing is, without them knowing what is going on, it's hard for them to tell us how long he has.

Those conversations were NOT pleasant ones with those two doctors today.

They are going to go ahead and go forward with dialysis in order to get some of the fluid drained. They are hoping to wait just a bit but it could start sometime tonight. It's already 1:30am (as I type this) so we will see. Brent is going back in about 30 minutes to see how things are.

We are trying to keep our faith. We have moments but we are pulling one another through. Brent has been amazing and totally catches me when I fall. The falling hurts...and it happens in the blink of an eye. We aren't giving up and the doctors aren't giving up. Clearly Cohen isn't giving up. I'm pretty sure Brent and I both can hear it in the voices of the doctors that they are pretty surprised he has made it through all of this in the past 6 days. Thank God he has and for all the prayers surrounding him.

The doctors and nurses really encourage us to ask questions and understand what is going on. Brent is amazing at this. I'm doing good (better). He googles things, writes questions downs, etc. He writes Cohen's stats down almost around the clock. I think it even helps the doctors, on occasion, to hear perhaps another possibility. Everyone is racking their brain in order to try and figure out what is going on. I'm able to ask questions based on conversations we have and I'm slowly but surely...quickly...learning more and more...every hour.

I also want to mention how amazing of a daddy Brent already is. If I were up and walking 100%, I would so have my camera and video recording him singing to Cohen, talking to him, playing him music, making up jingles, etc. It is the sweetest thing ever. I can only stand by him for a few minutes at a time before I start hurting. I still chat with him and rub his little arms and legs.

I would love if I got an email with a similar situation on this acidosis business. How awesome would that be?! I've gotten SO many emails from blog readers who have been in some sort of similar situations regarding heart babies and things we are going through.

It breaks my heart to see Cohen so swollen. I've gotten use to the of wires, cords and even the open chest (okay, that is still tough). But man, when you see your little baby so swollen, it's hard. He looks so different then I first remember him, that very first time. He looks miserable. He isn't. He can't feel this stuff and he won't remember it. Thank God. So, I do have pictures, but I won't leave you with those. I LOVE my delivery pictures. I LOVE the slideshow! Here are a few pics from it....and HERE is the slideshow if you haven't seen it :) (There is also a link under header in right corner.)







We got the sweetest, coolest, most creative goodie basket from our wonderful friends today. I have got to take pictures of it still. We've started playing the with the toys and eating the snacks so I need to whip the camera out ASAP! Did I mention it came with our favorites? CONEYS!

Cohen has gotten a few other super thoughtful gifts. He loves them. Luckily, he can have anything besides flowers. My mom got him his first balloons yesterday.

I will try to keep the updates coming and we would so graciously appreciate you all continuing with your prayers. We do believe they are working. We are just praying Cohen's little body can handle everything. A specific prayer can be to determine what is causing the acidosis and for Cohen to be able to fight it off.

My friend Kirsten emailed me this verse and I love it. I know she knows a lot of what I'm feeling as she has been through a lot of this before.

1 I lift up my eyes to the hills—
where does my help come from?

2 My help comes from the LORD,
the Maker of heaven and earth.

3 He will not let your foot slip—
he who watches over you will not slumber;

4 indeed, he who watches over Israel
will neither slumber nor sleep.

5 The LORD watches over you—
the LORD is your shade at your right hand;

6 the sun will not harm you by day,
nor the moon by night.

7 The LORD will keep you from all harm—
he will watch over your life;

8 the LORD will watch over your coming and going
both now and forevermore.


Photobucket

65 comments :

  1. Cohen is definitely in my thoughts and prayers. I was away for the weekend and kept thinking of him! Your doctors sound great, I'm really happy they're taking care of Cohen!

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  2. I'm praying everyday for sweet Cohen!!

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  3. What an amazing little fighter you have! Your photos are precious, it is moving to read your updates and I just want to tell you that you too are an amazing fighter and a wonderful new mommy!

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  4. I don't "know" you; I am just a blog reader. But right now, I really, really wish I could reach out and give you a hug.

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  5. Praying for your family, for beautiful baby Cohen and for the cause of the acidosis to become clear!

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  6. Praying everyday. Y'all are doing amazing with this, praying for healing and strength!

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  7. You and Brent are amazing parents. The love that I feel from you blog posts for each other and your sweet Cohen is so present. I have been praying for Cohen and will continue to do so. God gave some amazing doctors the talent needed to figure all this out! Hugs!!

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  8. Praying for you all each day. My heart goes out to you all.

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  9. You are just amazing, Megan!!! And pray that God will continue to hold you all up and bring you comfort!!

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  10. It's so hard to read this -- hopeful, yet hard. Thank God Cohen's a fighter, and thank God his doctors are fighters too. No one is giving up.

    I want to say something so encouraging, but all I can really say is that I'm praying for your sweet family. This is a path that, barring a miracle, my husband and I will be walking when our son is born in about 16 or so weeks. So my prayers for you are for hope, encouragement, and to be surrounded by exactly the people you need.

    xoxo,
    k

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  12. Happy Birthday sweet Cohen!! Don't stop fighting because your mommy & daddy need you to be strong. You are my little "adopted" nephew over the blogosphere and many times a day I check in on you. Thoughts and strength going out to you all.

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  13. I'm so glad you liked the gift basket! I really hoped it would make you giggle, even just a little bit :-) We love you guys! Hopefully we can visit soon so Penny can meet her boyfriend. She is in LOOOOOOOVE ;-) heehee

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  14. Happy 1 week old birthday sweet Cohen! Count in pure JOY! He has overcome so many trials during his little life, and we can certainly see what a strong fighter he truly is!
    I (as well) don't know you all personally, but I am encouraged by your words, your honesty, and your (quiet) strength. You ARE doing wonderful...no matter what you think. : )
    We are praying that the Lord (being the TRUE miracle worker that He is) continues to wrap His loving arms around your sweet boy and hold him tight during these difficult days. May the entire family feel HIS presence in little Cohen's life every moment. Praying, praying...and hoping.
    Thank you for the wonderful updates, and for sharing your life and your journey w/ us ~ your faithful readers and prayer warriors!

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  15. I'll continue to pray! I sent you an email about my friend Sara that is a pediatric heart nurse at Children's. She plans to visit with you- she has been praying for you & Cohen and Brent long before you ever even had Cohen!

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  16. What a beautiful post, Megan. Cohen is such the little superman. I will continue to pray for him!!

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  17. I don't comment on every post, but I do read them all. I really do think and pray for you and your family daily. I'm sorry all 3 of you have to go through so much! Keep fighting Cohen!

    Wishing I could give you a hug!
    Teryn

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  18. Those are my favorite verses Megan....I encourage you to write them down and keep them with you and everytime you feel your faith being swept away pray those verses!I am begging God to put His strength inside that sweet baby boy to help him fight and for answers to arise.

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  19. Cohen is a beautiful baby, and by the sound of it, quite the little fighter. I will continue to pray for Cohen! God bless you, Brent and Cohen! Prayers going up!

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  20. megan you are so strong! i wish i could give you a huge hug!! your husband sounds precious & what a little blessing cohen is!!!!! i know the rollercoaster it is in the NICU....you are doing great. the prayers are coming 24/7 from everywhere. cohen will have an awesome testimony of God's healing i can't wait to watch him grow up! love U!

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  21. Prayers for all of you! He is such a tough little boy!

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  22. Cohen is a fighter!! I'm amazed at how much he has endured!! We continue to pray. Owen has never had an issue with acidosis.. so we have no advice. I'm so sorry.

    We continue to pray and know that God is holding Cohen close right now.

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  23. Megan,

    I am praying for you. I don't know you, I don't know your husband, and obviously I don't know Cohen, except through your blog, but I am one of many that are praying. I will specifically pray for the lactic acid levels to return to a normal level, and I am praying that the doctors have supernatural wisdom.

    For Cohen: Isaiah 41:10 (paraphrased)
    "Do not be afraid for I am with you. Be not dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand."

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  24. I found your story a few days ago through another blog. I just want you to know that your Sweet Cohen is in our prayers, as well as your Family. He is a Beautiful Baby!

    God Bless
    Amanda

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  25. Praying continually for Cohen. The pics are so sweet and he is such a beautiful little baby.

    I'm praying God's guidance for the doctors, peace and a clear mind for your and Brent, and strength and healing for Cohen.

    Our God is mighty to save!!

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  26. What a fighter!! Praying for Cohen often throughout the day.

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  27. Megan, I am CONSTANTLY praying for little Cohen. I can't imagine what you and Brent are going through every single minute. He's a fighter. He gets that strength from his parents I think.

    Thank you for keeping us updated. I hope he has a good day today.

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  28. You and Brent are amazing...stay strong sweetie....we're here and praying hard for you.

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  29. Praying, praying, praying for you all. Praying for Cohen, praying for you and Brent, praying for his doctors and nurses that they find answers and solutions to help him.

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  30. Thinking about you guys and praying for you all day every day! I know this is sooo hard.

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  31. I am so touched my Cohen, and I have had such a heavy heart for you and your family. Just know God is with you, and you have tons of people praying for your precious angel. He is indeed a fighter, and I am praying he comes out of this without any problems. Keep your head up!

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  32. I found your blog through Kelly's Korner and wanted to let you know you are all in my prayers. Cohen is such a fighter already! You've commented a few times about not being able to stand long after your c-section. I just had a baby about 9 weeks ago via c-section and remember how frustrating that can be. Someone told me to get a "binder" - basically a wide belt of real thick elastic that goes around (under) your belly to help support when you stand up. (Kinda like a bella band but supports your belly instead of your pants...) Maybe one of those would help? Someone at the hospital would probably know where you could find one. I work in an NICU in KS and understand this roller coaster you are on. It sounds like you are but just make sure to ask lots of questions - the doctors and nurses won't mind. :) Prayers!

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  33. Love you Megan, Brett and Cohen. I know we've never met, but, I've been reading your blog for some time and am so impressed with you and your family--you are strong, you are faithful, you are amazing.

    My prayers are with your sweet Cohen, his doctors and nurses and of course you and your family.

    XOXOX

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  34. Megan & Brent,
    we are friends of Lisa's and have been keeping up with you all and Cohen. I just want to let you know we are with all your amazing family and friends in prayer for all things to work together for good! I wish I had some insightful thing to share but just know we along with our friends in church are calling out desperately with you to God. I know He is not only able but willing!
    His faith and perseverance is so evident in you!

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  36. Happy Birthday Little Muffin! As the minutes go slowly by and the tears come remember you have hundreds of new and old friends with their arms wrapped tightly around all three of you, praying. Lots of prayers and love!

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  37. I don't know you, but I have been enjoying your blog for a while. Just wanted you to know that I've been saying my prayers for sweet baby Cohen. I told my husband a little about your story, then last week I told him that Cohen was born....he now asks me nightly at our dinner table how "the baby" is doing. We are sending lots of prayers from CA!

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  38. I think I've told you about this song before, and you may already know it but if you don't, PLEASE download it when you can...it will make you fall to pieces but in a good way. :) The verse you posted reminded me of it because part of that verse is in the song. Casting Crowns-Praise You in this Storm.

    I also wanted to say how much yall's story is touching so many lives. Cohen is just one week old and is already an inspiration to so many people across America...as are you and Brent! God is using this situation to reach people...He has faith in you ALL! Your little boy is so so special and we are all praying that God heals his little heart and any other thing that isn't working perfectly. I hope your recovery goes quickly so you can whip out that camera again soon! We'd love to see Brent in action! You sound like you have a wonderful man standing by you girl. I'm totally in awe of you both for being able to deal with all this...I'm not sure I'd be strong enough. You are amazing! Love to you all!

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  39. Every time I think of you all, which is often and continual, I'm praying. For you and Brent, the doctors and nurses, and for Cohen and all of his bodily functions!

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  40. 3:04PM- Eastern NC- On my knees and praying for sweet baby Cohen and your precious family.

    Happy one week Cohen!

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  41. What a strong little guy, and what strong parents he has! So many prayers are still being said for all 3 of you!

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  42. Megan,
    I have never responded to a blog before, however I have followed your blog for months prayed daily and have shared your emotions and tears often. That sweet, precious baby Cohen is a blessing to us all. By example Cohen has shown us all that we must fight to survive and your family has proven that one. You and Brent are the best, and I'am sure you will be blessed you already have been because baby Cohen belongs you and God and you are awesome parents!!! Have been from the start and will be until that sweet baby recovers and your lives will be so enriched with love for him and each other.

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  43. Megan and Brent...I am praying for your family every day. I've been reading your blog for quite a while and commenting often lately. You just need to know how many of us are praying for you and think you are so strong and amazing. This is a journey unlike any other...keeping a notebook or journal with daily information will be helpful in organizing your thoughts and help you feel less overwhelmed. Cohen is already a warrior and he is a rock star in my book!!

    Many hugs and prayers to your beautiful family! ~Susan

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  44. I'm praying hard for you and Brent, Megan - and especially for the little man. He is going to be okay! I know this... I can just feel it!!!
    I hope you are able to rest too - you need to care of yourself. I can't imagine doing what you have to do right after having a c-section (having had 3 myself)... So I am sending you lots of *Hugs*
    PS
    I know you have better things to do than twitter - but I am following you (kissmycheek) but I am private so I can't twit back for you to see... so if you get a chance to follow then I can send my prayers that way too!! lol... *Hugs* xo

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  45. Megan, I have been thinking about you for the past week and will continue to keep you and Brent and baby Cohen in my prayers. He is a fighter! Stay strong!!!

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  46. Praying for Baby Cohen, we know what it is like to be there in the NICU with your sweet new bundle connected to wires and machines. He is a beautiful baby.

    Many blessings,
    Stacy, Chris & Noah
    http://www.noahsmiracle.blogspot.com

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  48. I found your blog through another bloggy friend of mine... Asking us to pray for you guys.

    I just wanted to tell you that my prayers are MOST DEFINITELY with you and your family and sweet baby Cohen right now and in the future.

    I will pray daily that God will open up the eyes and minds of these doctors and help them to figure out what is causing these problems so that they can fix them.
    I will pray that Cohen will stay strong, alive and well.
    I will pray for you and your husband's strength.

    And I'm sure I will come up with much more to add to my prayers for you guys:)

    My thoughts are with you all.

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  49. Hi Meghan

    I am not sure if you will have time to read my comment but I will write it anyways.

    I am the mom of a very sweet baby girl called Bella. She was born 15 weeks premature and nobody knows why she was born that early. She was in NICU for almost FIVE months and was extremely sick for most of that time.

    She had bowel problems, intestines perfurations, obstructions, a LOT of problems and it took doctors over 2 months to just find out what was wrong with her. They knew something was wrong but didn`t know WHAT. Until they decided to "go in" and try to find the source of the problem.

    She had a gigantic team of specialists taking care of her, bowel surgeons, pediatricians, neonatologists, infectious disease doctors, you name it.

    They finally found what the problem was and she slowly started to recover. She was born with only ONE POUND and today is a healthy baby who weights over 14 pounds.

    I know EXACTLY what you are going through,the pain that you feel. I have heard MANY times that she was on the edge, that she was too sick, at one point a doctor said that from ALLLLL the babies who were born in 2009 in that hospital, she was the sickest, that is something NO MOM wants to ever hear. It is pure torture.How can my baby be the sickest from hundreds of babies who go through NICU every month?

    She had a very bad infection for almost 5 months, her platelets were extremely low most of the time requiring transfusions multiple times. The infectious disease team did daily visits to her and ran multiple tests and nothing ever showed, nothing grew in cultures, everything came back negative, she was an enigma.

    The source of the infection was her bowel problems, so once that was figured out everything was sort of figured out.

    One nurse practitioner once said " I bet once we fix one problem all the others will be fixed, as everything might be related"

    So maybe that's what is going on with Cohen, one problem is causing lots of other problems, so lets pray for THAT problem to be sorted out and doctors will do their part fixing the "little" problems.

    I know it is hard to keep hope after so many bad news coming your way, I felt like that too, but you know what? In the end that nurse practitioner was right, and her infection was gone, platelets that once were as low as 5 (they supposed to be 200) went right up and after 5 months of fight after fight, she came home.

    But I can tell you this: Dont loose hope, enjoy every second of your miracle baby boy, take TONS of pictures (even when he is sick and you want to cry, i treasure her photo album with almost 500 pictures of just her time in NICU), bring toys to NICU, make little colorful signs to hang in his area, make friends with doctors and nurses, play music to him,just try to be as happy as you can because I AM SURE that if Bella made it through impossible times, it is because we were always there for her, always by her bedside (or at the hospital at least), we talked to her while she was on the ventilator, even when everyone said she was sleeping and couldn`t hear us.

    Bella and I had a special song, "Unforgetable", and I sang it to her every day, multiple times a day, and I know she recognized it. I just know it.

    After seeing Cohen's picture on the blog I can tell that he is a fighter and that he will teach a world of people what angels are made of. He will make it !

    Bella and I are sending you lots of prayers and online hugs all the way from Calgary, Canada.

    Special babies have very strong guardian angels, just imagine what a team of angels Cohen has!

    Lots of love
    Rita and Bella

    June 14, 2010 3:56 PM
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  50. Still praying for Cohen from Memphis, TN.

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  51. Hang in there Megan! My family is still praying for you!

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  52. Saying lots of prayers for sweet Cohen. What a fighter, he is! :-) You are an incredible Mommy already!

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  53. Thinking of you all daily!!!
    Friday night in church I was singing "When Nothing But A Miracle Will Do" I thought of you all. Here is the chorus.
    When nothing but a miracle will do
    There's nothing that the hand of God
    Can not bring you through
    I know He's more than able
    And He will deliver you
    When nothing but a miracle will do

    I wish I could give you all a hug! Maybe you can find encouragement in the words of this song. Songs carry me through life.

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  54. Have they looked into rare inherited metabolic disorder called Methylmalon​ic Acidemia (MMA). Thats what my niece just found out her baby girl has. I am praying for you and your family. you can visit her site at http://www.caringbridge.org/visit/emmajeanhummer/mystory

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  55. Still praying here and sending you big hugs. You and Cohen are in my thoughts.

    XOOX
    Jen

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  56. happy 1 week birthday, sweet cohen! every day that you are on this earth is a miracle! praying for you fervently!!

    megan, please know that you are in my thoughts and prayers constantly. i can't even begin to imagine your pain! god is in complete control. i pray that you have peace in knowing this now and always.

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  57. Thanks for another update, Megan. He is such a little fighter. You should be so proud of him. You should be proud of yourself (and brent), too.

    Cohen is a beautiful little boy. Praying they figure out what is causing the acidosis.

    Thank you again for continuing to update us.

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  58. My family and I are thinking of you constantly and praying for Cohen HARD! Prayers are going out for you & your family too, of course! You're all so strong and God is watching over you. Hugs!

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  59. How is Cohen doing today? I am praying for you all.

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  60. Megan,

    You don't know me but I read your sweet blog. I want you to know that I pray for Cohen nightly....specifically when my baby wakes me to feed, I rock Layton and we pray for God to heal sweet Cohen's body. We serve a mighty God and I know he hears our prayers. Stay strong for sweet Cohen....I can tell he has an amazing mommy and daddy. *Hugs*

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  61. Megan, I just recently came to find your story my heart goes out to your whole family. My sister had open heart surgery right after birth (1990) and although I was young at the time I remember the experience vividly. She will be 20 in Sept and has her scar to prove how tough she is. Cohen will too. I am adding him to my prayers now.

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  62. Megan...I am thinking and praying for your family during this time. My heart is crying for you all.

    xoxo

    Hugs from San Antonio

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