2.13.2010

My Sweet's Heart

Hi everyone. So, I've been avoiding blogger for a few days now. Not really. I've just not gotten on the computer in the past few days. I've had my iphone and that's about it. There is no way around this post so I've finally made myself sit down and do it.

Thanks to you all for your thoughts and prayers. We will need the prayers more than ever from here on out.

As I told you all, last Thursday, our regular doctor referred us to a Pediatric Cardiologist. We had the cardiologist appointment this past Thursday morning. It was pretty bad. It took about 3 hours and we walked out devastated.

There are 4 defects the cardiologist believes she found.

1.Atrio Ventricular Canal Type Defect
2.Ventricular Septal Defect
3.Transposed Great Vessels
4.Hypoplastic Pulmonary Artery

These are the two pics the cardiologist reviewed with us.

Normal Heart

Cohen's Heart?


I will tell you I'm not good with the human anatomy and overall, I was just sick. So, as far as explaining it ALL, I can't be the person to do that. I lost it as soon as she had the look and said the fist sentence. I was in and out but tried my best to listen to what she said. Brent  picked up more as he knows more about the heart.

When she sat down, she immediately said there was nothing Brent or I had done to cause this. It happened on it's own and there not sure where or when it happened just yet. She said more than likely it was between weeks 7-12. She asked us if I had an amniocentesis done because heart related issues are often related to genetic disorders. We did not have an amnio done but I did have a blood screening done and everything on it looked good.

Many of these defects are common. She (being cardiologist 1) said if we looked them up for research, we would definitely understand and learn more about them. However, she told us that all four of them together, are not common. She said the thing is, nothing or no one, besides a doctor, can explain to us how they are working together and/or against each other.

She (cardiologist 1) does not believe there is anything we can do right now to help any of the defects. She said we must wait until he arrives to see what is going on. She said it may require surgery immediately or it may be a few weeks. If he has to be stabilized then they would do that and get him to where he needs to be to have surgery. It will involve open heart surgery and just a series of other surgeries. We are unsure about a transplant because the cardiologist says it opens a whole different can of worms. He could reject the heart. The life is only 10-15 years on them. They don't do many neonatal transplants as they aren't able to save many of the hearts because some causes of infant deaths are so unknown. We are going to try to fix the heart he has first.

We were told so much it's hard to process. And of course we are sick about it. We've immediately began to pray specifically and take it one minute at a time.

I tried to ask all my "why" and "how" and "maybe" questions. I asked if he maybe was just underdeveloped in the heart and still had some developing to do. She didn't act like that was the case. She acted like what it was, it what it is going to be. His heart is currently the size of a quarter, which is portioned correctly with where he is gestational wise.

She said she didn't think things would get better at this point but could get worse. There could be other issues/defects because of this. And the quality of life isn't known yet. Instead of saying "she" I'm going to abbreviate and make her "Cardi 1"..sorry if that's unprofessional, I certainly do not mean it to be. I'll explain more below. Anyways, Cardi 1 said it gets harder to see the heart the further along I get. She said my regular doctor would monitor me and be able to detect any major changes. Well, I asked her why I wouldn't just have an ECHO done every week. She said she would work with my doctor in coming up with a plan.

If things get worse, they will have to take him early. This would not be good because he needs to be at a certain stage (in many ways) to have the surgeries. The longer he is in me, the better because I am, essentially, his best lifeline.

Cardi 1 seemed very impressed Brent and I had no known issues, though I now know it can just be a random thing. She also liked the fact how active Cohen is and how right-on track he is physically. She asked me about my pregnancy thus far and when I told her everything had been good she simply said "hmmm". Cohen was moving around a ton in the ECHO. He was moving around so much that they had to take a break to see if he would be still. Sure enough, when they tech stopped pushing on my belly. He would be calm. The tech did say his head was DIRECTLY on top of my bladder. I certainly could have told her that!!! I feel the need to tinkle non-stop. So, these things to me are good. He is doing his best and we want to do ours.

We go to our normal doctor Tuesday morning at 8:20. At that time, he will go over with us more of a plan and what he wants me to do to help keep this pregnancy stable and at it's best. Cardi 1 could not really tell me those things as pregnancy isn't her specialty. She works on hearts of unborn babies, babies & kiddos.

I say "Cardi 1" because there will probably be many Cardiologist in which we visit with. Thus far, we are looking at San Francisco, Boston & Dallas for more evaluations. Cohen's grandparents will be sending us wherever we need to go. They asked us to let them handle finding the best and figure that part out. I'm certain our doctor will help us with this as well. They figure that will just be more stress if Brent and I are trying to figure it out all alone. Of course, we are TOTALLY open to hearing any stories and opinions from anyone as far as situations and doctors. Some of the evaluations can be done by sending the ECHO video/pictures to doctors at those places that we have found. If they can take the case, we will go meet with them. Whoever we feel most comfortable with is hopefully who can fix our son's heart. I will have Cohen wherever the doctor is.

We will of course, be working with our doctor here as we are truly thankful for him. Cardi 1 told us first off how lucky we were our OB even picked up on this and sent us to a cardiologist. She said had we not known anything, when Cohen arrived it would probably have been a 48 hour scramble trying to save him..... with no sleep, trying to figure out things and find someone to fix it. With that being said, I thank God but I also wonder about my strength for the next 4-5 months. I'm just scared.

We are very curious to hear what Cardi 1 told our doctor after meeting with us. Cardi 1 seems like a fantastic doctor but overall, it was hard to get a feeling from her. We didn't FEEL her confidence that she should be the one to take our case. She does seem like a very smart lady. She said she is 100% for second opinions and evaluations. She even began to tell us doctor's names. If she doesn't feel all 4 of these defects are common together then perhaps she hasn't worked on all 4 defects on the same baby. Ideally, we would like to find someone who has.

Word around town (and many other places) has spread quickly. We've gotten calls, emails, texts & care packages. We are so appreciative God is surrounding us with great people. We are trying not to lock ourselves inside and snuggle in bed like we probably could for at least few more days. We did for about 15 about 20 hours just to process everything and have time together. We won't give up and we know God has a plan and that's the way it is going to be. We are tying to be optimistic and strong for one another. It doesn't take much for us both to have a very terrible moment. We are praying that gets better every day. I think once we have a plan, we will feel more at ease. We won't know the outcome but all we can do is give it our best. It's just a LOT to think about and handle and it's just scary. We want to go on with this pregnancy as we were before. We don't know what will happen but giving up little pieces of life we were living and planning, just feels like we would giving up on pieces of Cohen.

I've also emailed quite a few of you who had contacted me to check in or asked me to follow up. Thanks so much to everyone that comments, contacts me and just plain reads this blog!

I've also had people give me contact information for people they know that have had a little one with heart issues. I'll hope to be speaking to some people soon who may have been in similar situations. Last night at midnight, my sister in law emailed me a link to a little girls Caring Bridge page. She lives in the same town we do! In Feb 0f 2008 the mom was about where I am gestationally and her baby was diagnosed with SIX heart defects and 3 of them are 3 of the same ones Cardi 1 believes Cohen has! The baby girl was born in June of 2008 in Dallas and that's where she had her doctors and surgeries. They spent weeks at a time there. She found out early like we did and found the right doctors and got everything set up prior to and everyone was all ready to go when the baby girl arrived. I spend a few hours reading the journal the mom wrote as everything was happening. It gave me a lot of hope and I was just amazed with the mom's strength . I have strength but I'm certainly having to find more. Anyways, I think the little girls first surgery was about 10 days after birth and the next one was a few months later. The little girl has done amazingly and doctor's have certainly called her a miracle. While reading the journal, I found out the cardiologist that she uses here is the same lady we went to Thursday. So, Cardi 1 does the little girl's monitoring. She did it every 2 weeks for a while and I believe she is only having to go in monthly for her checks. I'm not sure when the next surgery will be. I'm hoping Brent and I can meet with her parents soon. I'm not sure if the mom meant the Caring Bridge site to be friends and family but I would like to ask her if I can post it.

We certainly pray that the next cardiologist doesn't find ALL four defects or perhaps seems a bit more confident about them. We have no idea. It will kind of be a waiting game until we start seeing more doctors.

I will certainly ask for everyone's prayers and thank God for everyone, everyday. It feels like a bad dream but God won't put us to it if he won't pull us through it, right?

I will keep you all updated and I promise to try to keep this blog up and going. I can't tell you how I'll be feeling from day to day but that's life.

love to you all!

Photobucket

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit ~ Romans 15:13

196 comments :

  1. Megan, you and your family are in my prayers.

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  2. I am so sorry to hear about what is going on with your sweet little one. My thoughts and prayers are with you and your family. I don't know if you have heard about it, but The Texas Heart Institute at St. Luke's in Houston, TX is the best of the best when it comes to heart research and surgeries. It is where the first transplant was successfully performed, and their labs are enormous. I had the opportunity to visit there when I was in high school and view a new surgery from the observation deck on the floor above where Dr. Cooley was working with one of his partners. They have a division that is exclusively pediatrics, and I know of several people that have had great success with them. You might want to add them to your list of options. Best wishes.

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  3. Hi Megan,

    You don't know me, but I've read your blog on and off for a while. I'm so sorry to hear about your baby, but know that God will guide you and be with you through all of this. I will pray for you, and pray that you will know exactly which doctors are best for Cohen.

    Jeremiah 29:11 - For I know the plans I have for you says the Lord. Plans to prosper you and not to fail you. Plans to give you a hope and a future.

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  4. There is nothing I can say that will help. You are in my prayers.

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  5. Oh Megan, I can't begin to imagine what you are going through right now. I'll be keeping you & your family in my thoughts & prayers.

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  6. You, your family and cohen are certainly in my prayers

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  7. Megan, I am so so sorry you got this not-so-great news.

    I have a HUGE amount of faith in Children's Miracle Network hospitals and doctors, but I'm sure you've already looked into doctors and don't need to hear it from me.

    Tons of prayers for your family.

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  8. Even though I accidentally deleted my blog, I have continued to read yours. I have checked here every day to see the news and am so saddened that you all have to face this. You are in my prayers, and I know from reading that you are surrounded with so much love, support and many, many prayers. We're all thinking about you. (((HUGS))))

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  9. Praying for you...I don't even know what to say. Just know you are in my thoughts and prayers and God can heal him because he created baby Cohen and he was meant to be here no matter what. Much love, Becky

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  10. I know I've already e-mailed you about this... it seems like you and baby cohen are in great hands! I'm hoping for the absolute best for you and your family!

    hugs again,
    Teryn

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  11. Praying for you and baby Cohen.

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  12. I can't even begin to imagine what you're going though, my thoughts and prayers are with you and your family!

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  13. Be a Prayer Warrior for Cohen! All the hope, prayers, support, encouragement and knowledge you all have and can share with Brent and Megan is welcome. Start Prayer Warrior groups on your own blogs for Cohen. Prayer is a powerful thing. When you think there is nothing you can do, you are wrong. You can pray!

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  14. megan, you, your husband, and cohen are in my prayers. i have been reading your blog for a while. it might not be needed, but if you need to go up to baltimore to johns hopkins, i have family there. i know they would be happy to host you all. praying!!

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  15. I will be praying for Cohen, and for you & your husband!

    Thank you for posting this, there are so many of us out here in blog-land who have been thinking of you and worrying about you and Cohen. I hope you will be able to keep us updated, as you are able.

    Many hugs!

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  16. Megan, I already sent you a message on FB, but I want just want to say again that I am praying for you. Girl, the Lord will not allow to walk down a path that He doesn't hold your hand on and give you the strength to do it. He will never leave you nor forsake you. He is watching over you and over Cohen, and He has a plan for sweet little Cohen.

    I am praying for the doctor's, for wisdom, for guidance, for knowledge on what is best. I pray that the Lord guides you in finding the best doctor's for your baby. He is faithful Megan, and He will carry you through. Lean on Him, ask Him for what you need.

    My heart is breaking for you, that you are having to endure this. Keep your head up, take care of yourself. I am thinking of you constantly and praying for you everyday.

    Much love friend and praying God's richest blessings for your family.

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  17. I have never commented before but have read your blog weekly. I was devasted for you today when I read your news. You will be in my prayers and I am truly sorry for what you have to go through right now when this should be the most blessed time of your life.
    I will pray for baby Cohen and for you and your hubby.

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  18. Praying for you, your family, and your sweet baby boy! God is a miracle worker and the Master Healer - praying for healing!

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  19. Megan

    I am lifting you and your family as well as precious baby Cohen up in prayer. May God bless you all and place his healing hands on baby Cohen's heart. Hugs!

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  20. I'm so sorry Megan. My heart is breaking for you, your husband and your sweet little baby.

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  21. Megan, my thoughts and prayers are with your and your entire family.

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  22. Megan,
    I've been following your blog for several months now, and I've been following your pregnancy since you first announced it.

    I've never gone through this myself, so I couldn't possibly begin to offer you words of wisdom. Please know that my husband and I will be praying for your family and sweet baby Cohen. We believe in miracles and trust the fact that God is the Great Physician.

    Take care,
    Micah

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  23. Oh Megan, my heart goes out to you tonight. You, your husband, and little Cohen will be in my prayers. God has a perfect plan and know that you are in the palm of His hand right now. Stay strong and keep the faith.

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  24. Megan and Brent,

    I am a follower of your blog and love reading what you have to share. I was so thrilled for you both when I learned of your pregnancy. I have been waiting for an update and when you didn't post Thursday or Friday, I was afraid you heard something none of us wanted to hear. The three of you are definitely in my thoughts and prayers. Lean on each other and all your wonderful friends and family. You have such a great support team, but more importantly lean on Him. He blessed you with this beautiful baby boy named Cohen. He will guide and protect you and comfort you in your times of need. I pray you find the right cardiologist that provides you with the expertise, comfort and compassion that you so need in this time. Take the time you need to wrap your head and heart around all you and your husband have learned and if and when you feel like posting on your blog, we will all be here patiently waiting to hear from you.

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  25. I know there is nothing I can say to make you feel better but please know that you and your family are in my prayers. My heart just broke when I read your latest post.

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  26. This is my first time to comment, but I have really enjoyed reading your blog. My hearts and prayers are with y'all now!

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  27. Praying for you all, and lil Cohen that you will all be strong enough and find strength. Mckmama took little Stellan to Boston for his heart, supposedly she said the best heart doctors were there. You should contact her to get the names, I don't know if she ever said them. Good luck!!!

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  28. Sending my prayers and uplifting that sweet baby boy! I also pray for peace and comfort for you and your husband.

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  29. I can't tell you enough how often I am praying for you guys... My heart literally breaks for you and I am so sorry you're having to go through this...

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  30. Megan, I have been reading your blog for a while; I found it through Lesli. I adore reading about you and your husband and I wanted you to know that you, Cohen, and your husband are in my thoughts and prayers. Be strong and God will guide you. Happy Valentine's Day! ~Jamie

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  31. love you. love hubby. love COHEN. praying hard all day every day. the gates of Heaven will be stormed with Cohen's name, and He will hear us. praying for strength for you and hubby tonight. hope you can get some rest! loves!

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  32. Oh my goodness, hugs to you.

    You have so many people praying for you and your husband and baby Cohen. I pray especially that God will help you to feel that comfort and to give you a sense of peace.

    Have you read Philip Yancey's 'Prayer'? I really recommend it if not--I read it during a time when my husband was having health problems and we were in and out of the hospital, scared and not sleeping much. It was EXACTLY what I needed to read at the time and helped bring me a lot of peace.

    (Did I comment on an earlier post recommending this? If so, I'm sorry.)
    All the best.

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  33. I will be praying for you and your family!...

    "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil4:6-7

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  34. What a lot to process.

    I am newish to your blog, but have enjoyed seeing your pregnancy progress. I will be praying for Cohen, you and your husband.

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  35. Love you megs! Thinking of you Brent Cohen and elton always!

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  36. Megan,

    I have been reading your blog for a while. I was so excited to hear that you were pregnant. I know this news was quite a shock. After following your blog for so long, I just know that Cohen is going to be a miracle baby and you will tell him the story of his heart for years to come. Your and Brent's love will get him through any trials to come. Love and prayers coming from this "blog lurker"...:)

    Pam

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  37. Continuing in prayer for you, Brent and little Cohen, sweet lady.

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  38. I will continue praying for you, your family and baby Cohen.

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  39. You and your family are in my prayers. Linda in Ca.

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  40. I'm so so sorry to hear about everything you are going through. Just remember that God is holding your hand a long the way. I know that it is going to be hard to enjoy the next few months amidst all of the trials you will face, but "Be Still and Know" that Jesus is Lord and will see you through this. I'm praying for your little guy! <333

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  41. I am so sorry you and your family are going through this. You are all in my prayers.

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  42. It is very encouraging to see everyone's prayers and well wishes for you, your husband and Cohen. I, too, will be praying for you all daily. I think it was extremely brave of you to share such a personal matter but it's so beautiful to see everyone come together for your sweet baby. Thinking and praying for you all.

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  43. you 3 are in my thoughts and prayers.

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  44. I'm SO very sorry to hear this about baby cohen!! I am A Pediatric Intensive Care Unit RN here in Atlanta, where we do plenty of these surgeries. I do know that there is a Great Cardio Thorastic Surgeon in Dallas, he used to be at CHOA with us, he is the Best!! I can get you his info if you would like. My prayers are will you, your husband and that sweet baby inside you!! Please email if you have any questions!!
    Many thoughts and Prayers!!
    Lindsay
    MitchellMartin07@aol.com

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  45. You and your family will def. be in my prayers girl! I wish you the best of luck and hope that you can find the best people out there to help you with this.

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  46. We do not know each other IRL, but please know that you have made many "friends" through your blog and we are all praying and hoping for the best. Take comfort in knowing that Cohen's name is constantly falling on God's ears.

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  47. I read your blog often and you will be in my prayers! God will see your family through this.

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  48. I will pray every day for you until that baby comes out all good and ready for the world!

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  49. I've been reading your blog since Jill featured you as a bloggy babe and I am so saddened to hear this! My family will be praying for yours. Remember that the Lord is the Ultimate Healer and NOTHING is impossible with God!

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  50. You and your family are in my thoughts and prayers...hang in there!

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  51. my heart goes out to you and your family. What a terrible thing to have to endure. My thoughts and prayers are with you!! Take care!!

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  52. I wish I could offer help or knowledge but I just wanted to say you are in my thoughts and prayers!

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  53. Lifting your beautiful family up in prayer. God will not forsake you, Lean on him, he will guide you through. Prayer is a powerful thing and I know you will be blessed with a beautiful baby boy :) Thinking about you today. XOXO

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  54. I'm praying for you sweet girl. I'm so sorry you guys are going through this.

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  55. We are praying for you and your little boy. God Bless.

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  56. Words cannot express how truely amazed I am at your strength to exen write thus post. May God give Wrap you in miss arms and hold you and your family in Hus arms as you endure the days to come. Praying for you here in Dallas.

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  57. Megan, I am SO sorry. My heart is just breaking right now for you, your family, and baby Cohen. I will be praying for Cohen daily. Thanks for keeping us posted. I know blogging is probably the last thing you want to think about right now. Praying...

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  58. I'm so sorry to hear about this. I will be praying for you guys and of course Cohen.

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  59. you have been on kyle's and my mind non-stop, you know that. we love you so much! we're here for anything you need.

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  60. I'm sorry for the bad new.
    Best wishes.
    xxx

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  61. I am so sorry for the scary news...I am praying for you guys!

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  62. I am so sorry to hear about this and that you two have to go through this. Remember, read the positive stories and educate yourselves. Keep a running list of questions that pop into your head, day or night. I like to do it on my phone so I feel more prepared. I know you will do the best for this child and he is so loved already. I will continue to pray for you and your family daily. If there is anything I can do for you here in the Midwest, let me know! My BIL is a doctor so if you are looking for more referrals I can contact him about the St. Louis area. Smile and know you are SOOOOO loved!

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  63. Megan, I am so sorry you guys are going thru this. God has a plan for you all and I have faith everything will be ok. God will lead you to the best dr. Praying for you guys! Lots of hugs!

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  64. Girl, GOD IS WITH YOU and the baby! And remember, He has not forgotten about you. He knows this is happening and He has a plan- even if it's hard to see now. I'm praying for you! Praying for comfort, understanding, miracles...everything you need right now.

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  65. Oh sweet girl...I'm so so sorry. You are right though. God won't give you more than you can handle. He chose you to be this little boy's parents for a reason. If you haven't already, please go listen to that song I posted in my comment on your last post. I found so much comfort in it. Stay strong as best you can but don't feel bad if you need to break down every once in awhile and let it all out. My heart goes out to you. I pray things work out and you have a sweet little "miracle baby" of your own! Doctors can do amazing things these days. Hang in there!

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  66. Here in NC I am praying for you. There is NOTHING our God cannot do. May lives be touched and hearts be changed because of your sweet Cohen. His story will be life changing.

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  67. Megan, I am so sorry. I am definitely praying for you, your husband, and your baby. God is in control and I am so glad you have such supportive family and such good doctors.

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  68. Megan, I love reading your blog! I'm so sorry to hear about baby Cohen. You all are in my prayers.

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  69. We put in a prayer request for you at church this morning. Praying for you, B, and C.

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  70. larry and i have been thinking about the 3 of you so much these past few days....we are saddened by the news but know that God is good and that he doesn't give you more than you can handle. i read a book a while back where a father was talking to his adult son (whose young daughter was in danger) and the father told the son that he needed to remember that our worst fears are seldom realized. for some reason, that little "pearl of wisdom" gave me comfort......i hope it might do the same for you. we love you all.

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  71. Praying for you, your husband, Baby Cohen and your family. God has a plan and he will take care!!

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  72. Oh Megan, I'm so sorry. You and your family are in my thoughts. I hope the specialists are able to work their magic on Baby Cohen and make his heart strong.

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  73. I will be praying for Cohen and for the two of you, and the doctors. I cannot imagine how you must feel right now. You have such a good attitude and so many people will be praying.

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  74. I am a big time follower of DeDe at Weathering the Storms. Just wanted to say that I read your story and I am praying for you! You will be in my thoughts and prayers forever! God is wonderful. All will be alright :)

    Praying!

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  75. Hi Megan,

    You don't know me and frankly, I'm not sure how I stumbled upon your blog. I think it's a God thing. My son was born a year ago and spent 5 weeks in Arkansas Children's Hospital. While I was there I met a lady named Laine and her husband Rich. Their baby had some heart problems that led to him having a heart transplant. He is healthy and well now, and I really think she may be able to give you some encouragement. You can find more of their story and contact them by visiting here: http://www.caringbridge.org/visit/leightonharper

    As far as a hospital goes, I highly, highly recommend ACH. It is a wonderful place. We go back often to visit the nurses and doctors there. Many other hospitals send their dr's there for training because it's just that great of a hospital and their staff is incredible knowledgeable. They also work with University of Arkansas for Medical Studies which is about 10 min's down the road. A lot of high risk moms actually go there to have their babies so they are close to ACH.

    I would love to pray for you, and if you'd like me to put a prayer request for you on my blog I would be more than happy to, I just don't want to do that without your permission.

    Sincerely, Jenna

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  76. First off, you and your family, and sweet baby Cohen, are in our prayers.

    Second, I have worked with children with heart defects. Many of them were born with them and had lived with them for years by the time they got to me (I did counseling and child-life style work with them) and let me just encourage you by saying, I worked with "miracle" child after miracle child. Some had had tons of heart defects, and yet, they were living and thriving at 5, 10, 12, 15, 18. They were fighters and beautiful children - the light of their parents lives and the light of mine. I have seen rarity after rarity overcome by these kids. No matter the diagnosis, I've seen these kids conquer it, as babies, as kids, as teens, etc. I know the news seems so dire now, but please know that nothing any doctor says to you is set in stone. God has a plan for Cohen, and your little baby may very well overcome things we adults will never understand. Please don't lose hope.

    We're with you in all this:)

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  77. Megan,
    Please know that I have requested prayers for your family with everyone I know. Our thoughts are with you. Remain strong... as difficult as that may seem.
    As a therapist I cannot tell you the importance of using your support systems right now. Talk, share, question, do whatever it is that your family needs.
    If you need to talk please do NOT hesitate to email me.
    Much LOVE.
    A long-time reader. Jen.

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  78. Hi, I just read your blog today. I linked over from Jenna's Journey. I want to encourage you. I was born with Hypoplastic right ventricle which means the right side of my heart did not fully develop. I had surgery at 2 days old, 2,5,and 17yrs. old. I am 25 now and doing great! I love my cardiologist but I am in Indianapolis so I'm sure you wouldn't want to travel here. I will pray for your family and this journey to come.

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  79. I don't know you but this story breaks my heart..Baby Cohen and your family is in my prayers!!

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  80. Many prayers for you and your family.
    emily

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  81. Know that I will be praying for Baby Cohen, for God's healing, for you and your husband's hearts and minds to rest peacefully in Christ. Stay strong and rest in Him! Please keep us updated-hang in there!

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  83. Oh Megan, I am so sorry to hear that. As always, your family and baby boy are in my prayers. I can't pretend to know how you feel, but I can think of how my parents felt when my brother was sick, and have a tiny bit of feeling from that. My brother didn't have anything wrong with his heart, but he had recurring brain tumors from the time he was 2. We ended living in Boston for about 6 months when he was 10 so he could have radiation at Boston's Childrens Hospital. I don't know about their pediatric cardiac unit, but I can say they were the best hospital for us, if that's the one in Boston you are considering.

    Take this time for the two of you and your baby boy...everyone understands you need it. And we are here for you! Praying for you all...

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  84. My best friends sister has a heart disorder and they go to boston hospital every summer so that she can be evaluated. They do a very good job. They have been evaluating her ever since her mother was 15 weeks pregnant with her. I really recommend them.

    I will keep you and your family in my prayers.

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  85. Dear Sweet Megan,
    My heart is incredibly heavy for you as I read your update on precious Cohen. I know I don't know you in real life, but that doesn't change the burden I feel for you. I am praying for you so often and would love to put a button on my blog so others can be praying for Cohen too - do you have one? As you know and are doing, keep your faith in Him and He will provide your every need. Nothing is impossible for God, and I am claiming that daily on behalf of you and Cohen. Blessings my friend!! :)

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  86. Goodness, I can only imagine how difficult this has to be for you right now. I am a sometimes commenter, but I have definitely been following along with your pregnancy and I just know that God has a great plan for you, your husband and sweet baby Cohen. We might not know what that is right now, but just being able to trust in the Lord is an amazing gift. I am in Dallas and would be more than happy to help you in any way that I can, if you do in fact end up down here, even if it is just a home-cooked meal! I will keep all of you in my prayers!

    www.ParkerEUpdates.blogspot.com

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  87. Megan, you are your family will be in my thoughts and prayers.

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  88. Thinking of you and your family!! please stay strong. I'm sure you will be in the best care. I am not sure which area is the best for this specialty. I am from SF Bay and I know there are an amazing amount of doctors here who specialize in newborns!

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  89. i have no idea how i found your blog, i guess just friends of friends of friends blog, but im sure glad I did. i dont know if this story will help any, but i think God led me here for some reason, soo its worth a shot. My nephew was born on Dec. 3rd of last year and was healthy as a horse. My brother and sister-in-law took him home from the hospital and even had his one week check up and everything checked out perfectly. At 8 days old he stopped eating, turned blue, and his temperature was very low. By the time they got him to the hospital his temperature was around 80. Doctors said it could either be his heart or septic and treated him for both. thank god, because it was his heart and he was immediately transferred to Levine's children hospital in charlotte, nc. We found out that night Luke had many many heart defects so mnany i cannot remember. It was a devastating time and the start of a very long and hard journey. But one thing is for sure, god never left that little boys side or ours. Luke had his first open heart surgery at around 2 weeks i think and it lasted 17 hours. Luke done well and was planning on comnig home when they had to give him CPR. They found a blockage and he would need another surgery. Gods timing is perfect and thank god he did not go home. Luke was sent to Boston childrens hospital for his 2nd surgery and it was a success. Luke eventually came home and started living a normal life. He went for a routine checkup in boston and found another blockage, This time he was put on the heart transplant list and recieved his heart on october 31st of last year. I cannot praise boston enough and the team of doctors and nurses their. Luke has been home since the first of january and is doing exceptionally well. He is a normal functioning 1 year old and is full of life. Please know to have faith and things can work out. I am sure you are about to be on the roller coaster my family and i were on for over a year now, but when you think you cannot do it anymore lean on God. i know i do not know you, but please know i am praying. Prayer works miracles and moves moutains. please email me with any questions Lucy_sig@hotmail.com

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  90. Praying for you and your precious baby. Found your blog from Jenna's Journey blog.

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  91. Please keep us updated so that we can all continue to pray! The power of prayer is amazing!!

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  92. Praying for you all. I cannot even imagine how I would handle this kind of news. God has a plan for little Cohen and he picked you to be his parents. You can handle this, according to His plan. I will pray for you all every day. It's all I can offer as I've never known anyone to go through this. Thinking of you all.

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  93. I am so sorry Megan...Yall are in my prayers! I cannot imagine how hard this is for you. Please know that Cohen is in our prayers!

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  94. My prayers to you and your family and your little one.

    My son was born in 2004 with Left Isonerism with Polysplenia - his condition include Congenitively corrected transportation or the great arteries, and many other heart and interenal organ issues. His syndrom has to do withthe placement of all organs. Some doctors call it Ivermark syndrom. I hope and pray that your little boy is like mine and thrives and is "perfectly imperfect".

    Lots of prayers.

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  95. You and your family are in my prayers too. I don't know much about hearts, especially baby hearts, but you guys sound like you're on track to find a great doctor!

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  96. You don't know me, but you're certainly in my prayers. All I can say is that with the talented doctors available and the grace of God, miracles are possible. I pray for one for Cohen.

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  97. I am so so sorry. I started reading your blog a few weeks ago since one of my friends was going through your exact fertility problems. God will get you through this and I will be praying everyday that he heal's Cohen's heart.

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  98. Megan…. I don’t even have words. I just wanted to let you know that I will be committing myself to praying for you. I love you girl, and I know that God is in control, no matter what the outcome is!!

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  99. There is nothing anyone can say to take away the worry...but all I can do is Pray...I will keep you in my daily prayers. I have a cousin who had heart problems soon after he was born. I know the worrying it can cause BUT I also know that doctors can be amazing. I truely hope you find the doctor that in your heart you think is "right"

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  100. Hi Megan. I found your blog a while back, but I have never commented before. I have loved reading your pregnancy post. You, your family, and Cohen will be in my thoughts and prayers.

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  101. Megan,

    I am so sorry to hear this. You and your family are in my prayers.

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  102. Hi Megan -

    You don't know me, but I've been reading your blog for a few months. Take heart - God promises a safe landing, not a calm passage. If God brings you to it, He will bring you through it. You're in my prayers.

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  103. Megan, I dont even know where to begin or what to say. I wish I could do something to make this better but I cant...I will continue to pray for you and the baby and your family. I know we dont know each other or even live near each other but if there is anything I can do, please let me know.

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  104. Megan,

    I have been reading your blog for about a year now and following your pregnancy with baby Cohen. I can not imagine what you must be going through right now, but I will keep you and your family in my thoughts and prayers. God is watching over Cohen and will take care of him.

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  105. I am so sorry to hear that! Your family are in my prayers!

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  106. I'm so sorry you are having to go through this. I will be praying for you all.

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  107. I have been away and am so sad to be catching up to hear this news about Cohen's heart. I will be praying for ALL of you! Please keep us all posted with any news when you can.

    Sending you all lots of love and prayers!

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  108. Megan,

    I have been a reader/lurker for a while now and I wanted to come out and say that I will be praying for baby Cohen, and I am sure thousands of other bloggers will be doing the same. I believe God can work miracles, and he certainly can heal baby Cohen, as well as help you find the best doctors to treat him. I saw that another person commented and recommended St. Luke's in Houston as a great heart hospital and I would also recommend the same. I read another blog where the blogger had a baby with SVT (I know SVT is totally different than the defects Cohen has, but nonetheless) and they used St. Luke's as well and the doctors did a wonderful job with their baby. He was born in November and is doing great today with no SVT. Another little miracle baby. Like you said, God will pull you through this. Keep staying positive and strong!

    Meghan

    p.s. if you want to contact the blogger in Houston, you can email me at meg.k.reid@gmail.com and I will get you the info.

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  109. Megan, I've been following your blog for a while now and I find myself anxiously awaiting your updates... I'm sorry to hear about these troubles with baby Cohen... You and your family will be in my thoughts and prayers.
    Hang in there and stay strong,
    ~*~Megan~*~

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  110. I'm so sorry! But miracles happen every day and I'm sure that if you find great doctors and make a plan, everything will go smoothly like that little girl. Your family is in my prayers.

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  111. Hi Megan,
    I have never commented on here before. I started reading your blog a few months ago. My sister told me about it as I have been diagnosed with PCOS and going through the whole infertility thing for the last year and a half. I have been amazed at your strength and positive attitude about EVERYTHING you have gone through. I was devastated when I read today. Even though I don't know you personally, I kind of feel like I do though, I will keep you in my constant thoughts and prayers. Baby Cohen is proof that miracles really do exist and I pray that he continues to be a little miracle baby!
    Many hugs,
    Kari

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  112. Hi Megan,
    This is the first comment I have made on your blog. I have been reading it for the past few months. My sister showed it to me as I have PCOS and have been going through infertility treatment for the last year and half. I have been amazed by your strength and positive attitude through EVERYTHING so far! When I read today I was devastated. I just wanted to let you know that you, hubby, and baby will be in my constant thoughts and prayers. Baby Cohen is proof that miracles really do exist, I pray that he continues to be a little miracle baby.
    Hugs,
    Kari

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  113. so sorry for you guys...must be overwhelming...i pray that you get better news from your next cardio consult. em

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  114. Megan:

    I'm so sorry to hear this news...my thoughts and prayers are with you and your family and darling Cohen! God will get you through. I would recommend looking at the physicians at Children's Hospital of Philadelphia (CHOP) -- my friend's 3 month old son just had open heart surgery there last month...he had numerous defects including a hole and is doing very well. Again, I am sending you thoughts and prayers...I will light a candle for you and baby Cohen!

    Jordyn

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  115. you and your hubby are in our prayers. God bless you both, and your baby.

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  116. I came to you from Jenna's blog and just wanted to let you know that you're all in my prayers...especially sweet Cohen.

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  117. Hi Megan,
    I'm a fan of your blog.
    I know you are researching hospitals/doctors for your little guy and I wanted to let you know that Rainbow Babies & Children's Hospital in Cleveland Ohio is a great one as well. Everything there is done strictly for kids so I imagine that they've had to have had a case like yours. People come from all over to go there. Best of luck to you and your family.
    You are in my prayers.
    Amy
    P.S. Here is the website:
    http://www.uhhospitals.org/Default.aspx?alias=www.uhhospitals.org/rainbowchildren

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  118. oh hun, it hurts to read this. i have been thinking about you! i am and will continue to pray for baby cohen, you and your family.
    keep the faith.
    sending you big hugs sweet girl!

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  119. Hi! My name's Leslie and I stumbled upon your blog. I wanted to let you know that 2 years ago, I was 20 weeks pregnant with my son, Liam, when we discovered he had 2 of your son's defects: Transposition of the Great Vessels and a Ventricular Septal Defect. Mine also had a Atrial septal defect. The last two are a cinch to fix when they've got him open; and help to keep your son comfortable before surgery because the "holes" between the two sides of the heart let the oxygenated blood get back where it needs to.

    It sounds like your cardio is on top of it. With transpo, there can be any number of other, minor defects. I want to share that just because she hasn't happened upon all four at once doesn't mean she hasn't seen all four before-- it's just a roll of the dice to see where they land. As far as optimal outcome post-op: find a VERY skilled surgeon. That is more important than the cardiologist you see during the pregnancy and after he's born. Most likely, you'll find pulmonary artery scarring to be the biggest risk, and this is within the surgeon's control. My son has this, which causes his artery to narrow and impedes blood flow. This has to be monitored, but considering the gravity of the defects he had, it's not too shabby! But it's still frustrating that it could have been prevented with better surgeons.

    At any rate, hang in there! You will get through this. I really cannot believe that the scary echoes, delivery, surgeries, scary first few weeks, etc were only 18 months ago. But today, Liam is healthy and sturdy and you wouldn't know he had to fight so hard to be here!
    Good luck and god bless--
    Leslie

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  120. Megan - Like others, I've been reading your blog for a while. You are such a beautiful person inside and out, and I know you will find the grace to survive the next few months as well.

    I will be praying for you and Cohen and for the doctors who will treat him. Cohen is already such a blessing, and I have faith everything will work out.

    Best wishes and lots of love.

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  121. Hi Megan, I am thinking of you and sending my best thoughts to your sweet Cohen.

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  122. I want to start off by saying I am so so sorry! I am and will continue to pray for you, Cohen, and your family. I truly think God will work this all out!
    A friend of mine from high school's daughter was born with a heart defect. They did not know about the defect before she was born, and it was the 48 hour scramble. They are actually from Texas and ended up in Dallas for the surgery. We do not really stay in contact with each other but through our blogs, but his wife is super sweet and I'm sure would respond if you wanted to talk to her. Their blog is ashleyandchuck.blogspot.com
    When you mentioned Dallas as an option, she immediately came to mind.
    And on a totally different subject, my husband and I have a Boston Terrier, Percie (she is a little girl), and she is our BABY! She just turned 5 last Friday and we had a birthday party! Praying for you!

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  123. Praying for you my sweet friend!! I am here for you if you need anything at all!!

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  124. praying, praying, praying for you!!

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  125. Megan, so many of us in Texarkana are praying for you, Brent & Cohen, asking him to hold you all in his caring hands throughout this journey. He does not promise that the sea will always be calm but he DOES promise to always be with you in the boat...

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  126. Praying for you and your family.

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  127. Oh, Megan. :(

    My heart goes out to you guys, truly, and my prayers are with you as well! Keep us posted...

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  128. Lots of love to your sweet family. Lots and lots of it.

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  129. Megan,
    I've stumbled across your blog a few times.. just want you to know that I am praying for you right now! Our God is so big and merciful and wants the best for his children. I am praying for peace for you and your husband and a miracle for baby Cohen. Nothing is impossible with God!

    Psalm 139:
    For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made.. my frame was not hidden from you when I was made in the secret place.. your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

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  130. Oh, Megan. My heart just breaks for you guys. Definitely praying for you, for healing from the Great Physician.

    ~Kathryn

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  131. Praying for you and Cohen! I know there are no words that can truly comfort your heart right now but your strength both amazes and challenges me! Asking God for healing, peace, and continued strength for you during this time!

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  132. Praying for you and Cohen! I know there are no words that can truly comfort your heart right now but your strength both amazes and challenges me! Asking God for healing, peace, and continued strength for you during this time!

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  133. I am thinking of you, your husband and baby. Warm thoughts of health and strength coming to you from Canada.

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  134. Oh Megan, my heart is with you, Hubby, and Cohen!

    I know I had briefly said before, but at 32 weeks the doctors found something with our little guy, he had surgery the morning after he was born, was in the NICU for 2 weeks (which of course seemed like an eternity) and everything is wonderful.

    It was completely God that they found it early, because we were able to, do what was needed, set up the (incredible) surgeon and teams ahead of time and everyone knew what to do. They had worried us with so many things and even though we trusted God we eventually had to really lay it all down at God's feet and know that He had a plan.

    I (and our family!) will be praying for ALL of you (and ALL of your doctors now and any to come)sweet lady! I have faith!

    If you have any questions about ANYTHING at all or want more details, please do not hesitate to e-mail me, naturallycaffeinatedfamily at yahoo dot com.

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  135. Defects caught in utero have great outcomes. I'm thinking of you as you travel this difficult path. I'm a CHD mom, or hear mom. I'm going to send your blogs on to others in our community. We will be here for support now and always. Much love and light. xoxo

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  136. Even after reading this on your blog it doesn't seem real. You, Brent and Cohen are constantly in my thoughts and prayers lately. You are the sweetest girl ever and I know God will give you the strength to handle all of this.

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  137. Saw your blog link on twitter and wanted to tell you that I am a heart mom, as well. My daughter was born with three complex heart defects that were not detected until after she was born. There are SO many online support groups and groups on Facebook, etc. that you may find a great source of advice and support as you go through this tough road. Prayers for you, your family, and your little one on the way.

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  138. Megan, I am sorry to hear about your son. There is really nothing I can say to you now, except that I am here for you. We have never met, but I am a Heart Mom too. I did not find out about my son's CHD until he was 14 hours old.

    My prayers are with you and your Heart Baby. If you want to talk, I will listen. (((hugs to you)))

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  139. I'm sorry about you're baby. Our little girl (L-TGA, VSD, PS) wasn't diagnosed until the day after she was born and there definitely was some scrambling and a survival flight. I know you're never "ready" for this news, but if I had known ahead of time I would have chosen to give birth at a hospital with a great ped cardio unit instead of here in Wichita where she was born. Luckily our card here sent us right up to University of Michigan in Ann Arbor where they see a lot of complex congenital heart defects. Our little girl has had 3 surgeries, one very complicated one, and she is now 21 months. We can't imagine life without her and look at the situation like this was the only way our Lily "came" and we would rather have her with her crazy messed up heart than any healthy baby. We cherish each and every minute we spend with her. We will be praying for you and your family as you go start this journey!

    Heart Hugs,

    Steph

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  140. All 3 of you are in my daily prayers.

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  141. Hi Megan ... just came across your blog and wanted to let you know I'm praying for you.

    When I was 20 weeks pregnant, I was called into my OB's office so they could discuss some "concerns". The concerns for my pregnancy were that they weren't sure they could see a nasal bone, which at that point would be -- or could be -- indicative of a chromosomal abnormality. I went on to see a specialist and have a level II sonogram, only to be told that my baby was fine, the nasal bone was there and to have a good life.

    Well, fast forward 20 more weeks and my daughter was born. At birth, we received her diagnosis of Down syndrome. Silly doctors -- they aren't always right.

    Anyway, I totally related to you when you were talking about the things they were saying to you during your meeting with the doc. Feeling like life is good and then having it crash down all around you.

    Praying for the best!! I have several friends whose kids had massive heart defects (they are common in kids with Down syndrome), so please let me know if I can hook you up with any of them.

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  142. I am so sorry to hear about your news. My daughter was born with three heart defects. She is 4 now and has not needed any surgery as of yet. Please be sure to email me if you want to talk. Praying for your and your family.

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  143. Hi There! I've never met you but i was directed here by a fellow heart mom on facebook! :)

    let me just say, i had chills while i was reading your story because it was like reading my own story!!! From the gestational point you were diagnosed, to the way you reacted when you were told to not wanting to get out of bed when you found out it felt so close to my heart that i had to reach out to you!!! <3

    i am the extremely proud mommy to a stunning baby with a heart condition. she has had two open heart surgeries already, one at 12 days old and the next at 5 1/2 months.

    i know it seems so incredibly scary now, especially because you don't know what to expect, but you are doing the right thing by surrounding yourself with people who love you and finding out as much as you can about your lil peanut's condition ahead of time.

    if i can be of any help or support to you please feel free to drop me a line at funkypinktoenails@hotmail.com or find me on facebook using my email address. my name is Kristie and i always have time to talk to another heart mom! :)

    please just remember one thing when you are feeling down, this is something that someone else shared with me, a heart patient. god doesn't make mistakes, and although sometimes we dont understand why things happen its all part of a beautiful plan

    take care and hope to hear from you soon!!!

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  144. Hi Meagan, I am a fellow heart mom and I truly understand every feeling you wrote that you feel. Learning that your babies heart is sick during pregnancy seems to suck all the joy out of it. BUT, I will tell you that it made me more prepared and apt to handle what was to come. I hope you are able to find the right doctor for your son. I am in love with our team of Surgeons, Doctors and Nurses. You will know the team is right when you meet them.

    My prayers are with your family, with you and your husband and espcially little Cohen.

    Sending our Heart Hugs and Blessings.

    Jenna- Mama to CHD warrior princess Lilyana.

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  145. Came across your blog and this post just made my heart drop. We were told around the same gestational age that my son likely had Down's Syndrome and a heart defect. After a few agonizing weeks of testing, it turned out he was perfectly healthy, the tests were all false positive. He is now almost one, and absolutely happy and healthy. I know it's not the same situation that you are in, but thinking about that time just makes me sick and so sad for others to have to go through such uncertainty and fear in a time that's supposed to be joyful. I have to say that envisioning, meditating and praying on the exact outcome we wanted was so helpful to my husband and I. And it certainly made our marriage stronger. Will be thinking about you.

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  146. Megan, I wish I knew what to say. What I can offer is my thoughts and prayers for your family. I trust GOD is watching over baby Cohen and will help you through this!

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  147. I know you have tons of comments to read through, so I'll be short..the CHD community is here for you whenever you need support..Facebook has a great community, Nathanial was born with TGA (Transposition of the Great Arteries) VSD (ventricular septal defect) and ASD (atrial septal defect), he had his open heart at 3 days old and is doing great. Boston Children's Hospital is the best in the world for cardiac care, and I hear Texas is very good as well. Best of luck in this new journey..

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  148. Please know that you are not alone. There is a huge community full of heart parents with heart babies. Our daughter was born this last November. She was diagnosed with tetralogy of fallot which is 1 of many different heart defects. You can read about our story if you'd like at happymom4life.wordpress.com We were blindsided by CHD and we have now learned and
    grown in a whole new way. It's hard - I'm not going to lie but please know you aren't alone. If you ever need anything you can always email me at happy1_4life@hotmail.com :)

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  149. P.S..and I wish I could say I am sorry..but I actually think you are lucky, to be able to be so prepared before your little one arrives :)
    All the best.

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  150. I found your blog through Jenna's Journey. As soon as I started reading, tears immediately came to me. My daughter went through the same thing. When she found out at about 5 months pregnant, she was devastated, as was I. But, we were so blessed to know ahead of time. Remember.....God has a plan. The one thing we learned though this is take one day at a time. Don't look ahead at what needs to be done, live in the here and now of what is being done. I hope that makes sense. My grandson was 1 on Feb. 12. He has had 2 open heart surgeries, and hopefully there will not have to be any more. His problems were different than yours, but when your baby is operated on at 12 days old, you find the strength through Him. My daughter is a trooper and I'm so proud of her. Enjoy everyday, leave it in God's hand. I will pray for you everyday and your wonderful baby to come. Blessings, Debbie

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  151. Hi, I'm not sure, how I found your blog, funny how that happens sometimes I guess.

    I am a Mommy to a 3.5 year old "Sweetheart" :)
    My daughter was born with Congenital Heart Disease, she had open heart surgery when she was 8 months old. I personally am a huge fan of UCSF Children's hospital. Madison had her repair there, and although her surgeon is no longer there, they are amazing. The hospital is wonderful and I know many children that have gone there and had amazing results. My daughter was born with a defect called "Tetralogy of Fallot", in case you were wondering, and if you have any questions please don't hesitate to contact me. I feel like it's my duty as a "Heart Mom" to help someone who has just learned they were part of this "club".
    Things get easier, I promise.
    Heart Hugs,
    Michelle

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  152. Hi Im a heart mommy with a 15mos old daughter born with CHD. I have a CHD blog called http://chdbabies.blogspot.com. It has many great tools and info for new heart families.

    There is also a congenital heart defect group on the Baby Center community. Great place to reach out and meet other families who can relate to your situation.

    I have heard of the defects Cohen has and know of many babies doing well after their specific surgeries! Keep the faith and positive thinking!

    Kelly Manz

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  153. I come here from a blog link requesting prayers.

    I'm pretty sure your baby has the same defects my daughter has. She is now 5years old and doing AMAZINGLY WELL. She's had 3 heart surgeries.

    Please feel free to email me if you'd like to chat tbelfonti AT gmail DOT com

    Our website: www.olivia-ann.com It's a bit outdated but just because "no news is good news"

    PLEASE get a consult with Children's Boston AND Children's Philly as they are the BEST of the BEST when it comes to children's heart issues. There really is no other place if there's any question as to how well your child will do.

    Good luck, God Bless and take care.

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  154. I will definitely be praying for you & your precious baby.

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  155. Megan I just read about sweet baby Cohen's heart issues. Our family will keep yours close in prayer and trust God during this time. Praying for your strength this week.

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  156. checking in on you today. i am so glad so many have shown you so much love. xo

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  157. I'm so sorry to hear about this. Praying for you, Brent, and baby Cohen.

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  158. Megan, you don't know me but a Heart Mom led me to your blog. I'm a 22yr. old Heart Defect Survivor. I have what it called Tricuspid Atresia or Hypoplastic Right Heart Syndrome or Half a Heart. I've had two open heart surgeries before age 3. My heart is more complex than Cohen's. There are millions of adult Heart Defect survivors with even worse hearts then Cohens. I hope that gives you some hope. If you ever want to talk, ask questions, etc. just let me know. I'm praying for your precious boy and his heart. I hope for a great outcome. I pray God comforts and guides you during this difficult time.

    My e-mail is: Sweeetie2516(at)Aol(dot)com

    My blog: www.laurensheart.blogspot.com

    Heart Hugs,
    Lauren

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  159. Megan, I am continuing to pray for you, Brent, and Cohen. I am so sorry that you are going through this. I know it just doesn't seem fair, but God is using you and this situation. You have so many people behind you praying for your family every step of the way!

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  160. I know that you don't know me and I am a fairly new reader to your blog. I just wanted to let you know that I am praying for you, your husband, and baby Cohen.

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  161. I'm so sorry to read this. I'm sending lots and lots of prayers your way...

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  162. I'm so sorry to hear about Baby Cohen's heart. I randomly visit your blog and happened to stumble upon it today. Must have been God telling me to prayer for y'all. I'll be praying for you all!

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  163. coming over from Emily's blog to let you know I'm praying here in FL. I know the power of prayer goes a long way !!

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  164. I am so sorry to hear this. :( But I am praying for you and Cohen. And I know that God can do amazing things through prayer!

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  165. You all are in my thoughts and prayers! Sending special prayers and positive thoughts your way!!!

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  166. [url=http://www.facebook.com/pages/weathercom/298713874092l]www.weather.com[/url]

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  167. I had the privilege of taking Lauren's newborn pictures...she is a stunning miracle of a girl..her mom - AMAZING. We will be praying for you and your sweet Cohen.

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  168. You don't know me, but I was directed to your blog by a fellow heart mom, Kirsten. I, too, have a baby born with a CHD. Grant's was not detected until after birth, and not fixed until he was 2 months old.
    Advice from someone who has been through it: find a doctor you trust, not only a cardiologist, but a surgeon. Meet as many as you can (I was unable to do this, and luckily was blessed with an amazing, GODLY, surgeon from OKC...he is now in California), talk to parents who have been through it, and build a network of friends who can understand where you are. Most of all, seek God's guidance, and all will be well.

    Cohen is in my prayers, and I will continue to read your blog for updates.

    God Bless!

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  169. Megan,
    I had no idea. I am so sorry for you. You are right God won't give you anything you guys can't handle. I will continue to follow and pray for the best. Our love - The Nuse Family

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  170. Megan, I'm so sorry to hear this news. I can't even imagine what you are going through right now. I will be thinking about you and keeping you in my prayers..

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  171. Hi Megan...

    You don't know me, I got to know Kirsten during Laurens' 2nd surgery. I have a little boy that had heart surgery about a month after her and they are bout 3-4 days apart in age. My lil' man's name is Schafer. he is doing awesome! He had Tetrology of fallot. If you want i have a blog at www.berkelinklings.blogspot.com . I have been horrible at updating lately, I think I needed a break. Please feel free to email me if you want too. I know I really needed to talk to other moms...it helped so much! Be praying for that "lil Braveheart" ( that is Schafer's nic-name):).

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  172. So sorry for what is happening. I will pray for you and your precious baby!

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  173. Megan, I was praying for little Cohen late last night and I just had this on my heart to tell you... I prayed for healing for baby Cohen and now I am just going to be Thanksful and praise God for what he is doing and will do for Cohen. Sometimes we just pray and ask and pray for something, but it is also important to be expectant. Expectant of what our God is doing and will do. If we ask he will provide. James 1:5-6 You may already be doing this and if you are that is wonderful. I can't even imagine what you are going through and I am not trying to minimize your pain. Just know I am praying with you. Thanking God.
    "Now Faith is being sure we will get what we hope for. It is being sure of what we cannot see." Hebrews 11:1
    This verse has special meaning for me. I know that you prayed and expected Cohen to come into your lives... and you were blessed with him. Take care. God Bless.
    Christina

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  174. I hope your appointment went as well as you would have liked yesterday morning. Still thinking about you and praying for you daily!

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  175. Megan and Brent,

    I am so sorry to hear about your family's struggle. You two and baby Cohen will definitaly be in my prayers and I will be asking God to strengthen all of your hearts. I pray that God will also lead you to the right physicians and that those physicians will work with His hands and mind. I also pray that God will be your Prince of Peace during this difficult time... During a recent visit to the hospital with one of my family members, the doctor told us that the one treatment that would definitely get her through her diagnosis more than anything the hospital could offer is her faith in God. That was so powerful to me and I hope you will find comfort in you faith above everything else.

    I love you guys so much. You two are such a fabulous couple and I know your combined strength and courage can move mountains.

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  176. Hi Megan,
    I have been reading your blog for a very long time. You and your family are in my prayers!
    Stacia

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  177. Megan
    I am a new reader but I am already praying for baby Cohen. I didn't have time to go through all the comments to see if someone else sent you this blog but I think you should check out babymaverick.blogspot.com. Although Baby Maverick is an angel, his momma did everything for him. They are in OK as well as you and I both are. She is extremely knowledgeable as well because she is a neonatal mediflight nurse, or used to be. She is now in PA school. Anyway, there may be some doctors names or information you could use to give Cohen the best chance. I hope you feel God's hand holding you and His peace. He already has Cohen's life all planned out to be used to HIS glory! By the way, small world! I came across your blog from another blog and looked at some old posts. I noticed that I know your BIL Curtis from OU. :) Anyway, prayers and hugs going your way!!!

    Sarah Wallis

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  178. Megan,
    I have just found your blog today. You are stronger than you think. My daughter was born with several heart defects. She had her first open heart surgery at 5 weeks old. She is 9 years old and doing great.

    Hollie

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  179. I am constantly thinking about and praying for you and your family and of course precious Cohen!! Praying that God will give you strength and comfort during these difficult days! And of course I am here if you need anything! love ya~

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  180. Megan and Brent,

    Shuggie shared Cohen's story with several of us girls last night and you are all in my prayers this morning. I too am pregnant and can only imaging what you both are feeling right now. I pray that you will both find strength and comfort in each other and your Faith in this hard time. Know that there are LOTS of people praying for God's protection over your family this morning. Even though Cohen has yet to take his first breath in this world, he has the best parents any little boy could ever dream of!

    Amanda (Morrison) Champlin

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  181. You should be so proud of the faith and belief that he is in His hands! Prayers do amazing things! xoxo

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  182. I just stopped what I was doing and said a prayer for you guys. Throughout all this, just remember to lift your thoughts up to the Lord, and know that He got a plan for you guys.

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  183. just wanted you to know that our prayers are with you. We spent 10 1/2 weeks in the hospital with our little girl in birmingham. She was diagnosed with hypoplastic left heart syndrome when i was 19 weeks pregnant. they monitered her every two weeks while she was in my tummy. Her heart grew and turned out better than we expected when she got here. we had other complications while we were there that is why we were in the hosptial so long.. You are welcome to email me if you have any questions or concerns.amyadamsau@msn.com you and your family are in our prayers!!

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  184. My prayers are with you all.
    If you end up at CHoP in Philadelphia, email me if you need anything. (They have an amazing program--my friend's baby had open heart surgery at day 30 of her life, and the amazing OB who delivered my babies now works at CHoP helping moms deliver right there so their babies can go straight to the neonatal specialists without transfer.) I know it is sooo far from home for you but wanted to reach out in case.
    Holding you all in my heart!

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  185. Megan,

    I found your blog through a friend. I got very similar news when I was 36 weeks pregnant with my son. I had been given the "normal" heart diagram too and then Sam's heart. I know how scared you must be. But God has a perfect plan for Cohen! I had a c-section at 38 weeks with the NICU standing by....baby Sam spent 4 days there, baffled doctors and got sent home perfectly healthy! I'd love to email with you if I can help in any way. I have thoughts on hospitals, too. If you read my blog, the heart part starts in September. Praying for you and baby Cohen!

    ericamill@gmail.com
    http://ajourneywithfaith.blogspot.com/

    Erica

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  186. Hi! I just found your blog from your button on someone else's blog. Just wanted to share briefly, I was also born with several heart defects, including a VSD. You are so lucky to find out early! Back in the 80s, of course, there was no way to check for that sort of thing, and my parents didn't find out until it was almost too late. Of course I had to have a couple of open heart surgeries, and today the technology and medicine is so much more advanced, it's amazing! Anyway, I just wanted to say that there is life beyond congenital heart defects. I'm now 25 years old and after my last surgery at 6 months, there has been no therapy or medication or anything like that necessary. God has taught me a lot through the heart defects, and I know Cohen will learn to see the design even in what we may see as a malformed heart. I've put my story up on my blog, in case you ever have the time. I will be praying for you and for Cohen!

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  187. I just found your blog thru Kelly's Korner and I also have a baby. My son has all the same heart problems as your son. He is 19 months and is pretty much your typical baby. He is not walking yet, but can climb like no one's business, but this is pretty typical of a heart baby. For really the first year of my son's life, he had 2 open heart surgeries and after each surgery he had 2 months of basically doing nothing. So he was behind in all gross motor skills. He didnt sit up until he was 13 months old and wouldnt even bear weight on his legs until 14 months. He has a physical therapist one day a week and then I work with him also. I am on facebook if you have any questions. Will your son have to have the BT shunt, Glenn and Fontan?

    my name is Tara Gibson live in Georgia. and my email is tara.lea.gibson@gmail.com

    Your little man is going to be fine. If you search heart mom blogs you will come up with a lot of blogs to read. Please contact me. You are lucky you your son got diagnosed in utero. I did also just like you because most heart defects need to be corrected immediatly, just think you are lucky. I have read many blogs where they did not make it and died within minutes, weeks or days....

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  188. We are praying for you and baby Cohen. Here are some verses I recently gave a friend whose daughter has spina bifida.

    Exodus 13:21-22
    The Lord went out in front of them in a pillar of cloud by day, to lead them along the way, and a pillar of fire by night, to give them light, so that they may travel by day and night. Neither the pillar of cloud by day nor the pillar of fire by night left its place in front of the people.

    Exodus 14: 13-14
    But Moses said to the people, "Do not be afraid, stand firm, and see the deliverance that the Lord will accomplish for you today...The Lord will fight for you, and you have only to keep still."

    Exodus 15:26
    I am the Lord who heals you.

    Psalms 4:1-8
    Answer me when I call, O God of my right! You gave me room when I was in distress. Be gracious to me, and hear my prayer...the Lord hears when I call to him...put your trust in the Lord...You have put gladness in my heart...I will both lie down and sleep in peace; for you alone, O Lord, make me lie down safely.

    Psalms 139:5
    You hem me in, behind and before, and lay your hands upon me.

    Psalms 147:3
    He heals the brokenhearted, and binds up their wounds.

    2 Corinthians 1:3-7, 10-11
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all consolation, who consoles us in all our affliction, so that we may be able to console those who are in any affliction with the consolation with which we ourselves are consoled by God. For just as the sufferings of Christ are abundant for us, so also our consolation is abundant through Christ. If we are being afflicted, it is for your consolation and salvation; if we are being consoled, it is for your consolation, which you experience when you patiently endure the same suffering that we are also suffering. Our hope for you is unshaken; for we know that as you share in our sufferings, so you also share in our consolation...He who rescued us from so deadly a peril will continue to rescue us; on him we have set our hope that he will rescue us again, as you also join in helping us by your prayers, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.

    Lamentations 3:22-23
    The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness.

    In response to the last verse, Beth Moore (A Woman's Heart) says, "I finally understood the nature of God's mercy and grace. They are always there, available every day, prior to our need, and in direct proportion to every moment's demand; but we must gather them."

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  189. i just found your blog, through blog hopping, and just had to say HI. i have a little kohen, myself. (with a K, not a C)...so hearing this story, really touched my heart.
    thanks for sharing his story.

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  190. Hello,
    We too have a child with major heart defects. We have been through what you are getting ready to go through. I found your story through Shannon Marshall here in Tulsa. Stay strong, and knowledge will help soooo much. Please feel free to contact me through Shannon if you all have any questions or need support of someone who has been there. Taylor my son, has been through 3 open hearts, 4 heart caths, numerous other tests and other minor surgeries. He was diognosed with Tetrology of Fallot with Major arterial pulmonary collateral arteries. His first two surgeries were the worst not knowing. They both took on average about 8 hours. Again feel free to contact us if you need support or have questions. He will make it through just fine, and you all will also. These types of surgeries are very complex but have a very high success rate. Good luck and stay strong for each other.

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  191. Hey Megan,
    My daughter Keeley told me about your blog and Iam slowly getting caught up. It just feels like I am reading my story although we didn't know Keeley's brother had anything wrong til he was delivered. God was soo good to guide us to choose a c section because his (Jacob) heart might not of been able to withstand a vag. I had an emergency c with Kirsten Keeley's sister ...which at first I was so upset but after learning Jacob had tetrology of Fallot I was able to smile and say Ohhh thaaaat's why we went through what we did. Always a blessing to see the end result of a storm you walk through. My prayers are with you..and feel free to find me on fb if ya ever need to talk... Love hugs and prayers!!! http://www.facebook.com/pages/Send-Love-to-Cohen/123375361026814?ref=mf&v=wall#!/lalasworld

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