2.18.2010

A few updates on baby Cohen

Hi everyone. Sorry to have left you all hanging for a few days. We've had probably the busiest and worst week. I can't believe it's only been a week.

The good news, at this very moment, there is still some good hope for baby Cohen!

Today(Thursday), I am 23 weeks and 2 days pregnant.

We have had two appointments since my last post. On Tuesday morning, we met with our OB. He did not get a good vibe from the cardiologist we met with last week. He told us, at this point in time, he did not feel much optimism and really wanted us to be prepared for what could be reality. He is an upfront and straight forward kind of guy, and we knew that ahead of time. He said things would be a lot more hopeful if it were one or two defects that would be much easier to repair. Right then, there were what we believed was 4 defects and they are as bad as they can be. Some babies have these defects but perhaps not to the extent the cardiologist believes Cohen's are. The majority of the heart is not good. Therefore, it being fixable is going to much harder, if even possible. Our OB did agree with us going for second opinions and trying to find out what was out there as far as solutions.

When we left the OB's office Tuesday, we did not feel good. We felt quite hopeless just as we had leaving the first cardiologist office last Thursday. Luckily, I was able to get into a cardiologist at Children's Medical Center in Dallas the very next day(Wednesday). Hubs, his mom and myself drove to Dallas and met with the Cardiologist.

I had an ECHO done right away once we arrived. It lasted probably about 30 or 45 minutes. Cohen is kind of a ninja! He was moving, kicking and doing flips. He would be shy too and try to cover himself up when they were looking at certain places. It was nice to see him and his activeness. A cardiologist in training did the first half of the ECHO and then the cardiologist we were meeting with came in for the second part and did the ECHO with her. We met with them right after to go over their findings.

Overall, they (the two docs at Children's Medical ) agree with what Cardi 1 (who we met with last week) found defect wise. However, they were able to go in so much more detail and they really didn't focus on all the problems so much. They went right into talking about the solutions. They specialize in these solutions and believe in themselves. The newest and possibly worst concern is the pulmonary veins. The blood flow pattern seen on the ECHO leaves the docs to believe there are some location issues with the pulmonary veins. This is not a good thing because with the veins in the wrong places, they can not function properly and therefore create a muscular type condition in which the veins tend to contract and cause blockages. This is specific prayer. There is a surgery they can do for these veins to put and connect them where they need to be, but this must be determined post arrival.

However, the vein situation is not a common thing, so they've only seen two babies with this at Children's Medical. One did not make it after surgery and one is doing good at this point (no details on age or anything). The cardiologist could not see the veins good enough yesterday to make a complete decision about their whereabouts or function, but she did say she was worried. She said at my 28 week appointment, she will see if she can see them any better but she doesn't really feel as though she will. She will check the ECHO on this blood flow situation to see if the veins are still indicating something isn't right. They MUST be there to be repaired and in which that case that we probably won't know till birth as well.

As far making repairs on the heart, they have a series of 3 open-heart surgeries they are going to aim to do. To start out with, there is a "short cut" in the heart that allows oxygenated blood to get pumped back into the body while Cohen is inside me. This shortcut is called the PDA. It is open in womb because his lungs haven't developed. A few days after birth, it typically closes. They will give him an IV in his belly button of a particular medication to help keep it open. The side effect of this medication is the baby forgets to breath and they have to put them on a ventilator. I believe this happens quite a bit. We will pray it does not.

The first surgery will be done probably in the first 3-4 days of life. This is called a BT Shunt. The purpose of the this shunt is to get the blood flowing where it should and to allow the lungs to develop a certain pressure if they can. The second surgery will occur 4-6 months. This is known as the Bidirectional Glenn Shunt. I believe this shunt re-routes the blood flow from the pulmonary arteries directly to the lungs. During the second surgery, they will remove the BT Shunt from the PDA and allow that close naturally. The third surgery will probably occur close to 2 years old and is called the Fontan. This surgery will help the 1 ventricle to pump blood out to the body while blood returning from the body passively flows into the lungs (with help from a little suction from the single ventricle).

Instead of 2 pumping chambers with a left and right atrium and ventricle, he will have a single pumping chamber with a top atrium and bottom ventricle.

They did speak more about the transplant but they want to keep that "in their back pocket" as a last option.

Because of the heart condition, Cohen has Heterotaxy Syndrome. This basically means his stomach is on the left side and it should be on the right. That will be another surgery to try to move it to where they are supposed to be in the abdominal cavity. We will have to keep a very close eye on him to make sure nothing inside begins to twist. They will not be able to do this surgery until he is pretty stable. When they do this surgery, the will also remove his appendix. They do that because if he ever were to need it out, doctors might get confused with things not being exactly where they expect. There are also complications with this because he could have a spleen issue which will lead to him needing to be on antibiotics for a few years. His risks of viral infections are much higher.

At 28 weeks, the cardiologist wants to see me back for an ECHO and to meet with the surgeron. I will also meet with the high risk OB I will start seeing in Dallas. The appointment is tentatively schedule for the 31st of March. I will actually be 29 weeks at that point. We didn't do the tour yesterday so we will do that then and speak with many other people. I will tell you, we were SO very pleased with the people we met with at Children's Medical Center. They were SO nice and helpful! They were amazing to have gotten me in so quickly. As soon as we arrived, the lady I spoke with on the phone greeted us and took us right back for the ECHO. I have the direct phone number for the two ladies I will be in constant contact with and they will be setting up all the appointments and everything when needed. Much less stress with their help!

The doctor wants me to start living in Dallas a month before I have Cohen. I will still have c-section but it has not been scheduled just yet. As I probably said in the last post, the longer he is in me, the better. I will be in Dallas a month before in case I go into early labor.

Every doctor hubby and I have met with has informed us they are certain that with the degree of Cohen's heart condition, it would not be compatible with life IF he has any chromosomal genetic defect. With that being said, we have decided to get an amniocentesis. We did contemplate this for many reasons but overall, our doctors and our hearts tell us it would be best for multiple reasons. We feel it will answer many of our questions. Every doctor tells us in their first sentence, "this is nothing either of you did"..."this is not your fault"... and we do believe them. In doing the amnio, maybe we can find peace with maybe what caused this. We also know that our chances for another baby with a CHD (congenital heart defect) has increased by 5% and the amino can tell us more on that as well.

No, I would not normally have an amnio but at this point doctors are thinking it is best in our situation and will help us all in many ways. I know there are risks, but no matter what, God is has a plan and that I just have to trust. We know God has a plan for Baby Cohen and we are just trying to follow what we are lead to do.

If Cohen does not have a clean amino, I will carry him as long as I normally would but I would have him here and not in Dallas. He will live with God blessed him with and between now and then, we will try to start working on peace with that. No matter what happens, he is our son and we will enjoy the seconds, minutes, days or years we are blessed to have him..in and out of the womb.

After leaving Dallas yesterday, we briefly thought we would continue looking for other opinions. We may still, but right now we feel comfortable with what Children's has to offer and the doctors attitudes. We may see about some other doctors around the country looking at the ECHO, we may not.

I won't lie to you, I KNOW that I sound a lot stronger in writing than I probably do if you were to talk to me in person or on the phone but I'm working on it. I look like I got run over by a train and I am indeed struggling with my emotions and questions I want answered. I know most questions can't feasibly answered right now. I am a mess BUT I know I have to keep it together for myself and hubby..and most importantly Cohen. I just take lots of deep breaths and try to stay busy. Some moments I feel a lot of peace come over me and the next minute I will lose it. I think hubby is the same way. I've been praying for God to show us his plan. I highly believe he is working through the doctors. Well, last night I had two dreams and I was in labor in both. In one, I birthed Cohen and in one I did not. I don't know what either of those mean. No matter what, I will still be giving birth to him. God just isn't revealing anything just yet. I just thought they were very interesting dreams. I don't remember much detail as I immediately woke up after each ...at the same part.

Waiting, of course, is the hardest part and that probably won't stop for quite some time.

Hubby and I are getting lots of support in many ways. We have AMAZING family and friends. People are being SO kind and helpful to us! I seriously don't know what we would do without our support system. And the internet/blogging community, oh my goodness! You guys have also been wonderful, too. All the prayer requests being spread, emails, comments and gifts are SO thoughtful of you all. I know I'm so behind on emails. I will work on them in the close future. Just know, I appreciate them all!

As I type this, Cohen has been kicking me non-stop! Just wanted you to know. I think he is thinking about you all, too.

I am going to try to get back to blogging regularly. I just only have one thing in mind and one thing going on! Maybe I'll just start cooking a bunch and posting recipes on sugar and spice? :)

I'm getting to see some of my best friends, that I don't see too often, very soon and that excites me. One of my besties who lives in Dallas came to see Hubby and I at dinner before we left town last night so that was nice.

I have turned the option off to comment anonymously. I should have done it a while back but simply forgot. If you want to remain anonymous to the blog community but yet want to leave me a comment, please just email me. Do not get me wrong, in the last post, I had some WONDERFUL and helpful comments that were left as anonymous but then the commenter would leave their name and email. That was great. do believe you can enter your name and not have a Google account or anything. I won't acknowledge any negative comments but I do look forward to the uplifting ones as this is the situation we are in.

HERE is the first post on Cohen's heart. It is also the previous before this one so you can click "older posts".

Love to you all!


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138 comments :

  1. Praying praying praying! For wisdom for you guys, and for the doctors, and for supernatural healing. Cohen is blessed to have you guys as parents!

    ~Kathryn

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  2. You, Brent, and Cohen are in mine and Jonathan's prayers. Please, let me know if you need ANYTHING when you're in Dallas. I have a lot of free time and would be happy to help with anything. :)

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  3. My Olivia has heterotaxy as well - and the stomach issue. There IS HOPE. Please feel free to contact me if you want to talk. :)

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  4. I'm so sorry you are having to go through this....I'm praying for you and that sweet baby. I want you to know that I had a very sick and paralyzed baby 11 years ago and after being put on a prayer chain, the very next day, he lifted his paralyzed arm straight up in the air. He is a miracle and through great doctors, you wouldn't hardly know that at one time he was unable to move his arm. Prayer does work. I've seen it work miracles. Just look at the wonderful, healthy, 11 year old red head on my blog-I was in a somewhat similar position as you and want you to know that I'm thinking of your family and praying very hard. We had great pediatricians, Alka and Sanjiv-I don't know if thats who you have but if by chance it is - you've got some of the best in the world.

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  5. Heard about your story from Kristine Brite. I am definitely praying for you, your hubby, and of course precious baby Cohen! Just wanted to let you know I also read another blog about a little girl with CHD. I believe she is currently waiting on the Fontan surgery. I know her CHD is not the same but I thought their blog may be a resource for you if you are not already familiar with the family. Here is the link http://faith.sillica.com/
    Blessings,
    Jen

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  6. I am so happy you have visited the great people at TCH. We went the same route and spoke directly with nurses vs front desk. It really is helpful and takes a load off your shoulders. I am anxious for you to meet the surgeon. I have no idea, who you are going to see, but I have emailed you and shared our amazing experience with the best in the world and I can tell you right now, he is simply amazing... they all are at TCH. You, your husband, and most importantly that sweet precious baby are all in great hands.

    I know if have a lot going on, but with time if you ever feel the need to vent, or just talk about the experience feel free to email me. Like I said, although they are different heart conditions our children have... we go through the same scared and horriffic emotions. When you say you sound much stronger while writing, I know this feeling. Behind the writing there are just so many more emotions and becayse of this my heart is breaking for you right now. Please let me know if there is anything I can do.

    I will continue to keep you all in my prayers. Please please please, do not hesitate to email or ask anything. I know first hand how helpful it can be speaking to someone in a similar situation.

    Many prayers being sent your way!!!

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  7. You all are continuously in our prayers! Please let me know if there is anything I can do.

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  8. I am praying for you your family and Cohen!

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  9. Thank you for the updates and the specifics that we can pray for. You're such a great Mommy to your baby.

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  10. Megan please know you guys and sweet Cohen are being lifted up at this very moment. We serve a Mighty God, praying for that healing touch.
    You're doing an amazing job for Cohen staying calm and positive.

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  11. I just found you're blog a few days ago. I and pray for your family that everything turns out the best!

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  12. You and your family, and especially little Cohen, are making big appearances in my prayers.

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  13. Prayers for all of you and especially baby Cohen! I stumbled across your blog a while back and really enjoy it. Thanks for sharing your story!

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  14. Sending thoughts and prayers your way.

    ~*~Megan~*~

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  15. Praying for Cohen, you and your family! Cohen is already blessed with amazing parents!

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  16. I don't know you and I have never read your blog before just now. A blog I follow asked that her readers pray, so I shot over here to read your story. I know I'm a stranger But I can tell you that I am praying for God to give you and your husband His peace. I am praying that God will craddle Cohen in His arms and heal him. I am praying for comfort for your whole family. I am praying that His will be done and that His plan be revealed.

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  17. love you!!!! highland park is praying for you, sweets. would love to hop in the car and head to tulsa if you need ANYTHING!

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  18. Megan,
    You, hubby, and baby Cohen are in our prayers. I'm tempted to say what people tend to say in these situations... God will not give you more than you can handle. To which I have often responded, "Well I wish God didn't think so highly of me." I hope you are able to find things that make you smile and even laugh so hard it hurts in the next few weeks. Cohen is a child of God and He will protect him and love on him. Be encouraged sweet friend.
    xoxo, E

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  19. Your post made me cry. I can't stand to see such wonderful people who want a baby SOOO much go through such hard times. I pray that Cohen will make it here safely. He will obviously be very loved and appreciated. God bless you & your families ♥

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  20. praying so hard for you guys! Lots of love and hugs coming your way!

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  21. Oh Megan, you all are in my prayers. You are such a beautiful girl with a sweet spirit. I know God has great plans for baby Cohen. Thinking of you all...

    <3 Bon

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  22. Thank you SO much for keeping us all posted.

    Still thinking of you, and will be until Cohen's outta there! :)

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  23. My friend shared a poem with me when I was pregnant titled "What is a Mother". The poem ends with this..."A mother possesses incredible wisdom and wonderful insight and skill - In each human heart is that one special corner which only a mother can fill!"

    The power of love is incredible..."So faith, hope, love remain, these three; but the greatest of these is love."

    Continued prayers being sent your way!

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  24. Praying for all three of you and sending you lots of love. It breaks my heart you have to go through this.

    Thank you so much for taking the time to keep us posted. You are so sweet to update us, because there are so many of us out there that care about you and want to know what is going on.

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  25. I am so far behind on catching up with everyone's blogs that I am just now seeing your last few posts on baby Cohen. I am SO sorry that you and Brent are having to go through this. I will keep you and your family in my thoughts and prayers and please keep trusting in God that he has a plan. I am sending a lot of love to all of you and will continue to follow your blog regularly so that I can stay in touch with your situation. Lots of bloggy love.... xoxoxo

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  26. Megan,
    I am so so sorry. All of you are in my prayers and I am praying for a miracle for sweet baby Cohen. Lots of love headed your way...

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  27. Oh girl I am praying for you and baby Cohen. I can't imagine what a hard week this must have been for you. I'm glad that you were able to find comfort in this new group of doctors. I know you are a strong girl, you are handling this with so much strength.

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  28. Continuing to pray for all of you!

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  29. ah from Classy and Fab sent me your way. Know that you have an extra prayer fro Cleveland, Ohio.

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  30. Prayers to you and your family - and your precious baby.

    My son also has this condition.

    I belong to a Facebook group - I highly recommend it to you. There are people there who have been through this - we support each other - it is wonderful.

    Ivemark Syndrome Support Group

    This is a group to support patients and families affected by Ivemark Syndrome (aka Heterotaxy, aka Asplenia Syndrome). Ivemark syndrome is the association of congenital absence of the spleen with abnormalities predominantly of the cardiovascular system.

    LOVE AND PRAYERS.

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  31. Thinking and praying for you constantly. I pray that you feel God's grace and mercy with you each step of the way.

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  32. I've been praying for you guys and will continue to do so. I can't imagine how hard this is for you and I hope everything works out in the end. Cohen is lucky to have such wonderful parents!

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  33. I will continue to pray for you, baby Cohen and your family. God has a plan!!! Stay strong!

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  34. I will continue to pray for baby Cohen and your family. Stay strong!

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  35. I have been praying for you all week!
    I know you need your time to absorb all this, but just know, people you don't even know are praying for you and I hope you can feel God wrap his arms around you.

    T

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  36. I stumbled across your blog, and I enjoy reading it. I am so sorry to hear about Cohen's condition. However, I am praying daily for your sweet and precious baby. Prayer changes things.

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  37. I'm praying for Cohen and your whole family. Especially that you will feel God's peace :)

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  38. Thanks for the updates and the renewed prayer request! I love that Cohen is kicking all the time, it makes him seem so excited to come out to play :)

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  39. I just came across your blog today, and so glad I did. I will be praying for you and Cohen. Sounds like you have it right... God has a plan and you trust that! Even when it is most hard to do, it is all we can do. What a blessing to find helpful doctors!

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  40. Megan,

    I am happy to hear some specifics to pray for. Again, I cant imagine what you are going through but just know that you are supported and loved by a lot of people. I am praying for your strength to get through the day. One day at a time. Phil 4:13

    love,
    April from North Caroline

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  41. I am praying for you and sweet Baby Cohen! Your faith will be an inspiration to many.

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  42. You are a strong woman and Cohen is so lucky to have you as his Momma. I hope it's only good news from here on out and I will continue to think of you & your family and hope only the best for you all. Thanks so much for keeping us all updated on Baby Cohen - so many more people than you even realize already care so much about him! And you!

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  43. Sending lots of prayers your way. I pray God will reveal his plan to you. You are a beautiful person and I know you will be BLESSED!! Stay strong. XOXO

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  44. My thoughts and prayers go out to you, Brent and Cohen! Cohen is so blessed to have such wonderful parents. I will continue to pray for you always.

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  45. I'm still praying for you and Cohen. Thank you for the update as I have been thinking of you.

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  46. Thinking of you and praying for God's peace for you and your family.

    Lots of hugs and belly rubs!

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  47. Megan,

    I like the blog! Last time we saw you it was at Myles' bday at Hard Rock before you were preggo. Congrats on baby Cohen!! Sounds like times are a little rough right now, but stay strong. You have a beautiful gift from God growing inside of you. He does have a plan for you, Brent and baby Cohen and I'm sure everything will work out.

    Your family is in prayers. Stay strong and believe!!

    Allison

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  48. I'm coming over from Sarah's blog, Classy and Fabulous. I am praying for baby Cohen and you right now.

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  49. praying for you guys! Cohen is already so loved. Keeping you in my thoughts from one Okie to another :)

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  50. Wow! I'm so sorry that you're going through this. You are a wonderful mother and that shows through your post. I am praying for a miracle for baby Cohen. I will also pray that the doctors are guided by God's hand. Know that you are covered in prayer and thank you for sharing.

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  51. i haven't stopped praying and will continue.
    my thoughts are with you three.
    sending you hugs and lots of love.

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  52. Sarah at Classy and Fabulous, had a link to come on over and pray for you. After reading your story I will do just that. I can't imagine what you are going through and I hope you know that you have a lot of people on your side praying things work out!

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  53. I am a friend of Jill Shumaker-Douglas' and she has been keeping me up to date on how you are and i just want you to know that i pray fervantly for you and your family and baby Cohen. You are such a strong and wonderful woman of God and God is using you in miraculous ways. I see His strength in you. You will be in my prayers as well as my thoughts! You are already special parents!

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  54. Hey sweetie, it's Melissa from good ol' Athletic World. :) I've been following your blog for a while and i want you to know you are all in my prayers. Hang in there!!

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  55. Oh my gosh Megan, I am so sorry that I've missed this. I can't imagine how hearing all that news would be. God is capable of big, BIG, and mighty things and I don't put it past him that he can heal your little guy, or use the doctors to help in that healing process after he's born. I'm sure that the waiting game is no fun, and can be equally as stressful as the whole situation...but for now, just enjoy and soak up all those precious baby kicks. You get all this time with your little boy to yourself right now before you share him with the world.

    Praying for strength for you and your husband to make all the right decisions.
    xoxo

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  56. I don't remember how I came across your blog but I have been flowing for a few months and just wanted to let you know you are in my thoughts and prayers.

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  57. I am praying that God continues to give you strength and wisdom through all of this. I am praying for sweet baby Cohen and hoping that he can feel the support and love of all the people around him, especially his amazing parents.

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  58. Girl, I am praying for you! My good friend Alyssa called me this morning & we are praying for you... my heart goes out to you!!!

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  59. IDK what to even say, other than I am thinking about you guys and Ill be praying for you.

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  60. praying everyday for you and your family! if you need ANYTHING here in dallas, just let me know!!!!

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  61. I just came across your blog and my heart aches for you. I cannot imagine the pain you and your husband are going through. My strongest prayers are with your entire family & especially Cohen at this time.

    I'm hoping for a miracle for your precious baby!

    xoxo

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  62. I'll keep praying for your family, like all of these wonderful bloggers! Just remember that even if you don't understand God's plan now, you will later, don't ever forget that.

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  63. I know what you mean about keeping it more together in "writing".. but that in person it may be a different story. I'm sorry that your family has such a huge trial to deal with at this time. So many decisions and questions that you can't have satisfaction on right away.. it's a waiting game. My heart is sincerely with you. I was completely in tears reading this update, but with absolute hope for everything to work out bc it sounds like you've found some wonderful experts to help you on your journey. I had just blogged yesterday about our decision not to do an amnio because of what OUR situation currently is. I also said in there that I can't say that I would NEVER do an amnio, bc there are situations that I'm sure I can't even imagine where I would feel like the benefits completely outweigh the risks associated with it. Not that it matters what I think, but know that I completely support your decision to do the amnio and that I would probably do the same thing in your situation. I specifically pray for you family and will continue to do so.

    Hugs!!

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  64. I am floored by your whole situation and by your strength through it all. If God brings you to it, he'll bring you through it. I'm praying for you, you husband, and baby Cohen.

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  65. I so wish I had some helpful information to give, but I don't. Just know that I am still praying for you all. It's heartbreaking to hear what you are having to go through, but you are right. God always has a plan and even though it doesn't make sense now...someday it will.

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  66. I found your blog from another blog...and I just wanted to say that I prayed for you. I sincerely hope that everything goes well for you and your precious son.

    Blessings, Grace

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  67. Still praying for you sweet girl... Like I said in my email, I'm so glad your docs are looking at solutions down in Dallas, instead of just talking about the issues. Sounds a lot more hopeful. I'll be praying for a clean amnio hon.. Keep your head up

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  68. Thank you for updating us! We are thinking and praying for you in the brown girl household. If you need anything at all while in Dallas, we are here for you. Much love to your family!

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  69. Sending all the positives thoughts to you that I ever could!

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  70. You are in my prayers. I am so sorry you are going through this! My son was diagnosed with a similar defect as yours. You will soon find that there are endless combinations of CHD....

    My son was diagnosed 14 hours after delivery. He has had the BT Shunt and a Bi-lateral Glenn. He is 21 months and we are waiting on the Fontan in the next year. My son also has pulmonary atresia, he does not have the atretic pulmonary valve that sends the blood from the ventricle to the lungs to oxygenate, which is the reason he had the Glenn & will need the Fontan. He also has a single ventricle.

    I want you to know you are not alone. There are many groups and organizations that work with Congenital Heart Defects and Heart Families. I didn't realize how large and strong of a CHD community there was until my son as over a year old. If you need anything at all, please contact me. I am here for you to talk to.

    Sending you and baby the biggest prayers and thinking about about you and your family.

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  71. Thank you for the update. I am sure it is relieving to get some questions answered. Remember to take care of yourself and give yourself anything you need at that moment. Take care and remember you and your family are in my thoughts and prayers. I find peace in knowing you are in great hands!

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  72. I'm coming over from Sarah's blog and praying for you, your hubby and little Cohen.

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  73. You, Brent, and Cohen are in my prayers! I'm praying for the doctors and your family! You will get through this!

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  74. I was directed here from Classy & Fabulous. My prayers are with you and your family during this trying time. You are right...God has a plan. Miracles do happen.

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  75. I am commenting on here cause I want you to know I read it, I however am going to email you a personal email as well cause I'm bursting at the seams to tell you something :)
    xoxo
    k

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  76. I can't even begin to imagine what you must be going through. Please know that I am praying for you and baby Cohen. And, that God will give you such comfort.

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  77. Hi,

    I just came across your blog and wanted to reach out to you and offer support, as one heart mom to another!

    I have two boys with complex CHD-one also w/heterotaxy.

    My youngest son just had his bi-directional Glenn surgery one year ago.

    We were told the same thing regarding chromosomes, but both boys had normal chromosomes. (We did the amnio, too.)

    And just as an added comfort, it is VERY rare to have two kids with complex CHD. There are only a handful of us two-timers around.

    I will be praying specifically for Cohen, that his pulmonary veins are there and functioning at birth.

    And I'll pray for you, that you feel (and remain) as strong as you sound. You will surprise yourself over the next few months.

    If you need to talk, I'm more than happy to listen.

    Lisa @
    All That and a Box of Rocks

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  78. I wish I had words of encouragement or words that could make this all make sense. But I don't. But I am SO thankful that you have a relationship with God and trust His plan in all of this. That is what will make all of this make sense one day. Still praying for you, hubby, and Cohen.

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  79. Hey Megan, this is Ellen, Brents cousin, and I posted your blog on my FB status and wanted to give you some feedback from it! I do not know what you are going through but from one mother to another I am in constant prayer for all you! I love you guys! Please let me know if there is anything at all I can do, I know you all are overwhelmed right now so I am keeping in contact w/ Lisa! This is from a friend of mine at church, hope it helps!

    Ellen could u past this along to ur friend, I couldn't figure out how to comment on her blog, LOL.thanks

    I have a friend that has 5 month old with a CHD (TAPVR), she has been through much and still more to come but she has a blog that I am linking u to for words of encouragement and that God doesn't give us things we cannot handle!!

    http://www.facebook.com/l/9fde5;prayingformarley.blogspot.com/2009_10_01_archive.html"

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  80. My heart goes out to you and your husband. I'm so sorry. Prayers coming your way!

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  81. I have been reading your blog for quiet some time now. I've been praying for you since I first read about this. God has a plan, trust him & you will be blessed!

    Many Prayers!

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  83. My heart hurts for ya'll. Much love and prayers are on their way from Fayetteville

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  84. Saying prayers all day long for you, Brent and Cohen. There is always hope.

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  85. I just started to follow your blog and I will pray for you and your family everyday. Your right God has a plan for everyone and he does for your Cohen.

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  86. My hearts hurts for you but you all will be in my thoughts and prayers and that God can show you his plan and that it be a blessed one.

    Big hugs love!

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  87. Praying for you and your family and especially baby Cohen. It may not seem like it now, but God will never give you more than you can handle.

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  88. I admire your strength in all of this. I can imagine what you must be going through but I think your faith in god and his plan will help you no matter what happens.
    I wish you and baby Cohen and your hubby the best =) Keep doing what you are doing!

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  89. Wow, I am terribly sick and in bed right now. I found you via ClassyFabSarah's post. This is a great reminder that there are people who need prayer far worse than my measly bacterial infection this weekend. Your family and Baby Cohen will be in my thoughts and prayers this weekend. Just remember God has a plan for everyone! *hugs*

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  90. We are praying for you and Cohen. Love you.

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  91. I saw a link to your blog on twitter. A childhood friend of mine has a daughter that was born with a congenital heart defect, and through them I've followed the Harrison's journey as well. They are located in the Dallas area, and their son was the youngest heart transplant recipient in Texas. They've been through a lot at TCH. I think their blog might help you some, and I'm sure they could answer any questions you might have. Their blog is: http://keeganh.blogspot.com/
    I'll continue to pray for your family.

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  92. Oh Megan, I am thinking of you and Brent and Cohen several times throughout the day and I'm always praying for you. We need to come up with some projects to help you stay busy. I think I feel a craft night coming on! :)

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  93. For You, Brent, and Cohen. your prayer touched me. I'm praying! I found this site helpful www.holylandprayer.com Check it; maybe it gives you a relief. God bless.

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  94. see you tomorrow!!! :) Can't wait to squeeze all three of you. I'm bringing some goodies too!

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  95. I am keeping you and your hubbie and baby Cohen in my prayers!

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  96. I will continue to pray for Cohen, you, your husband, family, and your doctors for wisdom!

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  97. You are so strong! I am praying and I know that God will use this situation for his glory. Cohen is a strong active little boy and will do great! <33

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  98. I am praying so very hard for your family right now. It sounds like you have found some amazing doctors that you trust and God is definitely working through them!

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  99. I hope this goes with out saying but you know I've not stopped thinking about yall lately! and you know i can hop in the car and head west if you need me!

    p.s. your background is fixed and it shouldn't happen again!:) loves!

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  100. OK, it's ALLISON this time :)

    I hope this goes with out saying but you know I've not stopped thinking about yall lately! and you know i can hop in the car and head west if you need me!

    p.s. your background is fixed and it shouldn't happen again!:) loves!

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  101. I am heartbroken for you & your hubby, but you & I both know God has a plan! I'll be praying for you & baby Cohen!

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  102. Praying sweet girl. For you , your hubby and your sweet baby. Hugs MOmma

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  103. Megan. I have been praying for you since the first time I read about the situation. You are in my thoughts and prayers! And yes, God has made many miracles and I am certain this one is in His hands. Cohen will be fine!

    Let me know how I can help, and although I am miles away, I will do my best to assist you! You and your family are in my prayers!

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  104. wow megan. i had no idea. i can't imagine what you guys are going through. as a doctor, i wanted to express that your relationship with your physcians is so important. when you feel in your gut that you trust them, go with that. your faith in God, already seems confident.
    sending prayers from colorado!
    heather

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  105. Continuing to pray for you friend and for your sweet baby. You are in good hands and no better hands to be then that of the Lord's. Keep leaning on Him, keep believing in the power of prayer, it's powerful!! I am praying that when Cohen is born there are no defects!!!! What a praise and a miracle that would be!!!!

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  106. You, hub, and Cohen are in my prayers. Hang in there, I know that this is a hard time and just know God has a plan.

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  107. I just came across your blog for the first time today and I wanted to tell you that Baby Cohen is in my prayers. I know this has to be so difficult to go through while your pregnant. Stay positive and know that God will not allow you to walk alone during this emotional process. Please let me know if you need anything.
    -Rachel

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  108. Hi,
    I just came across your blog! This is just sooo heart wrenching! You are in my thoughts and prayers! I have a few bloggy friends who have been through and are going through similar circumstances....I will leave you with there blog names and if you have trouble finding them let me know and I will help ya link to them! Maybe they can offer you support! You probably know Mckmama and her son Stellan! When she was like 22 weeks she was told Stellan had a rare heart condition and wouldn't make it once he was born. He is now 1 1/2 and after several surgeries god has completely healed him and he doesn't have SVT's or anything! God is good! Lean to him! He has a plan for all of us! We just may not know what it is yet! My second friend is over at Just Inspired! Her friend just had a baby girl with a rare heart defect and is being flown to the hospital the Duggar's little girl is at! Sooo I am telling you this because there is hope and right now the outcome may not seem great but it may turn out to be alot better than expected! I will pray for you!
    Summer

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  109. I don't know what to say but I"m hoping for the best for all of you. You seem like such a sweet couple and I hope everything works out. Stay strong and know you're loved!

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  110. Megan, I'm friends with Rachel Brown and she told me about you and baby Cohen. I'm reaching out to you because I, too, have a baby with a heart defect. In the summer of 2007 when I was 25 weeks pregnant, I found out that one of the twins I was carrying had Hypoplastic Left Heart Syndrome. I, too, was devestated. I won't lie, the process was so hard, but the outcome for us has been so great. Blake and Lauren are 27 months old, and Blake is doing everything that Lauren is doing except he doesn't eat as well as she does. He has a feeding tube to supplement. But, like I said...he's walking and even potty training with his sister. The really cool thing is that as parents, we're stronger than we even realize. We can make it through it because we're doing it for our children. We have one more open-heart surgery this summer, and then hopefully we're done. You are so wise and faithful to rely on your faith during this time...that will literally carry you. God and the prayers of your family, friends, and even strangers will carry you through this. Please feel free to contact me with ANY questions. There are a lot of little things I learned the hard way and would love to give someone that info so you have an even better experience than we did. There are things you don't think are important now because you are in survival mode, but you should still do them to help in the long run. For example, encouraging the paci (for feeding), and doing deep pressure massage (to avoid sensory issues). Don't want to overwhelm you at this point, but do want you to know that I am here. Our medical site that we used to keep everyone updated is www.caringbridge.org/visit/christiehuggins. There is a lot of valuable information on there, if you can handle reading it. My cell is 540-810-0489 and e-mail is christieahuggins@yahoo.com. I'm also on facebook under Christie Hammond Huggins. Take care of yourself. Praying for you and baby Cohen. -Christie

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  111. i just found your blog and i'm praying...

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  112. Praying for you, the doctors, and baby Cohen! I know several babies who have had their hearts fixed at TCH, and all stories have been wonderful!

    I will be praying with you for the results of the amnio. I can't imagine what it's like to have to wait and see, and I pray that you stay strong, and find peace in the Lord. God placed Cohen with you for a reason......he is in good "hands" :) Much love and prayer from Owasso!

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  113. Praying for you and your family! I can only imagine that a million different emotions are flowing through your veins these days....My cousin and his wife had to deliver their daughter at 6 months and a month after that she had to have open heart surgery too {when she was only 1.5 pounds and not even suppose to be out of the womb yet} She just celebrated her first birthday and that proof that miracles happen everyday. You and your family are in my thoughts and prayers. xoxo

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  114. Prayers, prayers and more prayers. I truly believe you are in the right hands at TCH. My niece is a direct product of these wonderful doctors and nurses. Baby Cohen is in my thoughts daily!!

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  115. I'm so sorry about the struggles you and your little bean are going through. You will all be in my prayers!

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  116. We are praying hard over here!! for all of you! Thank you so much for keeping us updated and you'll have to let us know about all the projects you do to keep keepin' busy! I know we're states away, but if there is anything we can do, please let us know (we mean it). Lots of love and hugs!

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  117. I am praying for all of you! God has blessed you with stregnth and I pray that he will continue to give you stregnth and peace with whatever the outcome is! Although i will be praying first that he completely heals baby Cohen.

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  118. I'm just catching up on blogs & am so terribly sorry to read about your troubles. You have a wonderful outlook and a strong faith in yours & Cohen's futures, which I love. I wish you all the best - I'm so glad you are with great family & friends that care so much about you both. Take care and I'll be sending the best thoughts possible your way!!

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  119. Sending good thoughts and wishes for you, your family and baby Cohen.

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  120. I took a moment to scroll through these comments & it overwhelmed me the love & support that is pouring out to you from our blogging community.

    I'm continuing to pray for you & Brent & Cohen. Each night as I ask for the grace of God on my family & loved ones, I ask that his hands bring you all peace & comfort as well.

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  121. I am 31 weeks pregnant and am in awe with your amazing patience at the situation placed before you. Know that I am thinking of your little Baby and sending him lots of prayers during this time. I hope the amnio gives you peace of mind and provides the results you are looking for. Best wishes.

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  122. I will continue to pray that God will bless you with decisions that you are forced to make. Cohen is a precious gift. Praying in NC.

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  123. Good luck! I'll keep you and your family in my prayers :)

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  124. I am just getting around to catching up on your blog and my heart is breaking for the pain and anguish you must be going through. You are in my thoughts and prayers.

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  125. Hello there! I read this from a post I saw on another blog and want you to know that I, a complete stranger, will be praying for you and baby Cohen. I just had my first baby 17 days ago, 6 weeks and 2 days early. She in the NICU (day 17) and my heart breaks for you - as I know I would never want anyone else to go through this pain that I have. You are not alone - God is faithful - many prayers to you and your family.

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  126. I feel for you so so much. Please know that your family is in my prayers.

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  127. Just got your link from another blog. My prayers are with you & your family. Just curious, are they planning for you to have a c-section so as not to stress Cohen's heart during delivery?

    NICU RN Dawn

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  128. My 4 year-old had the Glenn (8 1/2 mo) and Fontan (23 mo) We were told there was a 50% chance she would need the first surgery, and she did not. From what I understand, it is not open heart (through the side, under the arm), so if that is the case with Cohen, that will help at such a tiny age. The others, of course, are open heart. I have a CaringBridge site if you are bored. (www.caringbridge.org/visit/macy) The dates of her surgeries were June 13, 2006 and August 29, 2007, so you can search for the journal entries around those dates.

    The first cardi we went to was so sweet and tender, but our ped told us she only deals with simpler defects, like holes. It is the most important thing to pick the best team you can. You don't want your son to be a guinea pig! We are in Nashville, but I sent my baby's info to Boston. The cardi there told me Nashville could take care of my baby. That was all I needed to hear. Although she is done with her major surgeries, there are lifelong issues that you will deal with, like him tiring easily and making sure he rests. That is our biggest concern right now. He will be the JOY of your life. When you watch your precious baby endure more than most adults, he will hold the sweetest spot in your heart. It will be a journey you cannot fathom. Always LOOK for the blessings.

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  129. hello - i found your story through another blog - and i wanted you to know that i prayed for you, your family, and sweet baby Cohen last night.

    sincerely,
    jessa from philadelphia

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  130. I haven't been by your blog in a while and then I read about baby Cohen on someone else's blog...I am glad that I stopped by again so I could say a prayer for your sweet baby! God is there for you girl. I will be praying.

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