Updates – dodging a bullet

Hi everyone -(I can’t believe I misspelled the title word “dodging” …. I told you, I’m tired. I just fixed it though.)

Sorry I’ve been a slacker today on the updates. I’m just drained!

Cohen had a good night after his surgery but starting about 5am he kind of took a turn. Since they fixed things up quickly, they didn’t let us know everything going on until they had him fixed up and doctor was able to meet with us.

I headed from Children’s back to Parkland today about 8am to get discharged. When I got to Parkland is when Brent called that the doctors wanted to meet with us. At that point, we had no idea why. So I had my mom get me back to Children’s…keep in mind..I’m in a wheelchair and at the time, I was still connecting to hospitals via basement. I tried to get her to run : /

When I got there we met in the family consultation room. Brent and his mom were in there along with our social worker and the hospital Chaplain. Of course, I immediately thought, oh my God, something has happened and they are going to tell us. The Chaplain introduced himself and said Cohen had been confronted with an issue but that he was stabilized. He let us know, he is often invited to the doctor/family consults to be there for support. I felt a little better at that point. The CV-ICU head doctor (who we talked to all the time) came in quickly after.

Dr.Koch let us know that Cohen had a atrial tachycardia incident. This basically means that his little heart went haywire and had gotten up to about 300 beats per minute. Luckily, since the team is so close by, they were able to start manually pumping his heart and get him stable. They told us with such a major operation his heart just needs meds and guidance in order to properly function and learn what do to. He is at risk now for this to happen again. So hopefully to prevent it, they added and increased medications.

The had the ECMO team bring in the ECMO machine. That is NOT what we want. ECMO is extracorporeal membrane oxygenation. This is a machine used for complete life support to allow the body to rest…usually after major surgery. Cohen is already medically paralyzed (medical induced coma) so it would have made things much worse to have had to go on the ECMO machine. The doctor said on the ECMO he would probably only have 3 or 4 weeks before he had to come off of it.

When we went in to see him after meeting with the doctor, the ECMO machine was in his room. This afternoon, it was across the hall from his room.

The doctor told us that the ups and downs just come with this territory. I felt like I knew that. However, it felt much harder when it actually happened so quickly. He had a successful surgery and we were on such a high. Cohen was such a trooper in the major surgery and he did so well all night. Then, his poor little heart just needed some help. It does not mean the surgery didn’t work. The surgery was still successful they just have to get his little body ready to work with his heart . We pray it all works together well. There is lots of adjusting meds and trying to ween him off of them so that they can test how other things are working.

Later in the day I was able to ask more questions. There are no timelines. They told us if this happens, that happens. They so encourage us to ask questions if we have any at all.

I needed peace and quiet after we met with the doctor and then saw Cohen briefly. Brent and I just hung out in the family consultation room. I napped for a bit because Cohen had a whole team in his room with lots of machines. We’ve been able to spend time and talk to him this this afternoon. He looks good. Well, he looks as good as he can. His color is good and I swear his hair is thicker or longer today.

They were pleased he did good all day today with the changes they added and made. We pray that continues.

I did make it back to Parkland today for a few minutes to get discharged. My OB, Dr.Santiago, has been wonderful at letting me be where I need to be and checking in on me. When she came into discharged me today she checked things with me and found out how things were with Cohen. She also got to watch his delivery slideshow. I would indicate which when she is in the slide show..but they are all kind of dressed the say. Anyways, I’ve loved having her as my OB in Dallas and I have a few follow ups in the future.

My pain is doing okay. As I mentioned, still in wheelchair. I’m just having to cover to many steps to be walking. I’m having that “burning” which I thought was on the outside of my skin but Dr.Santiago said though it may feel like that, it’s probably right under and internal. But man, it freaking hurts sometimes! Only a few times a day really bad..when I stand or move funny. My incision is healing good though.

The nurses and staff at Parkland were all super nice and helpful.

Back to the slideshow, thank you all for the sweet comments :) I do watch it ALL the time.

I’m going to post a few pictures from Tuesday and Wednesday. Tuesday I came to see Cohen at Children’s for the first time since I got to hold him when he was on his way to Children’s. When I got to Children’s they did already have him intubated but he could still open his eyes some :) Wednesday we spent time with him before he went into surgery. I am going to post a picture of him from last night after his surgery. He does have wires and cords all over him. It is sad. In case you don’t want to see the chest opening…..you really can’t all too well because the picture was taken with an iphone.

I will indicate which pictures are from Tuesday and which are from Wednesday.

Here we are on our way to Children’s. For me it was the first time to see him since the day before right after he was born….

Here is his room. We hadn’t really moved our things into the back of it when this was taken. There is a couch, chair, armoire. We are going to get Cohen some cute stuff but kinda want to wait until things calm down. Notice, whoever (probably a nurse?) made the cute sign for the bed, reads the blog :) I’ve had lots of sweet people tell me they are readers here!

On Tuesday (an some of Wednesday) we had to “scrub” in somewhat because they were still waiting on some specific tests results to come in.
He was having a sonogram done here…..


he likes my finger :)

Brent taking me back on Tuesday afternoon….

The next set of pictures are from Wednesday…

Brent showed up to my hospital room with a sweet little stuffy for Cohen on his surgery day.
Talking to our social worker….
This was before he went back for surgery. For the surgery updates, I did them in the previous post.
we named the stuffed pup..BT for the BT shunt Cohen was having put in during surgery.

waiting for the hourly phone calls during the surgery. I think it ended up taking about 5 hours.

Here is he after surgery :( He isn’t feeling any pain and he can till hear us. He is a medically induced coma so his body can heal.
All the pics (minus the iphone ones) were taken by Brent’s mom. I think she took a few today I’ll post soon.

I honestly wish I was better at describing all going on with Cohen medically and using all the terms, but I’m just not right now. Maybe (hopefully) I will be in the future. However, right now when a doctor starts talking to you with phrases like “he dodged a bullet” and “he isn’t out of the woods” you kind of just can’t think about anything else but your baby. He almost died. He is critical. He may be for critical for a while. It sucks, it really does. The doctor told us we need to take things about a half a day at a time because his situation can change so quickly.

Once again, thank you all for your thoughts and prayers. We greatly appreciate them!

I’m not big on talking on the phone at all right now. Sorry, and no offense to anyone. I am doing some texting though. I am reading and saving all the emails I’m getting. Someday, I will maybe have some time to reply for those..but in the meantime, thank you all for those. I will get back to twitter and facebook updates hopefully tomorrow. Praying it is a good night and day.



  1. says

    His room is so precious…LOVE the sign and the matching blankets! What loving people! I'm so glad you are in such good hands. I continue to pray for you all!

  2. says

    Hang in there guys. I think you and Brent are so strong and such good parents already to your little guy. I'm praying constantly for you, Brent, and especially Baby Cohen. <3

  3. says

    I think about Cohen and you all day and i'm always checking back for updates. He's a tough little guy :)
    You all are a beautiful family i hope his recovery goes quickly

  4. says

    Praying so hard for you and Cohen. Reading your posts bring back so many memories of being in your same situation a year ago. You should not think you aren't explaining everything well. You are doing a GREAT job. 16 months later I still have a hard time explaining Cain's heart and the surgeries to people. Love that y'all name the stuffed animal BT. And love to see the smiles on you and Brent's face even during this hard time. I can tell y'all are a wonderful & positive couple and that will help Cohen more than you can imagine. Hang in there.

  5. says

    Thank you for Cohen's update. I've been thinking about you and your precious son all day…..can't count how many times I checked for an update. I can't even imagine the stress you must feel. Please try to get some rest when you can…………
    May God continue to bless you and Cohen.
    Linda Miller Charlotte NC

  6. says

    Megan and Brent,

    I am praying for y'all! I cannot imagine what y'all are going through right now with little Cohen, but if y'all weren't supposed to be at Children's, God would not have put you there. Like the doctor said, take it a little at a time, and before you know it, he will be so much better! Hang in there! Love and prayers from Texas!!!!!! :-)

  7. says

    Still praying for your precious little boy, and his sweet family. …and don't worry about the medical terms, most of us wouldn't know what they meant anyway. …but we do know a Mama's heart and love for her baby, and your's is evident.
    Remember to take care of yourself too!

  8. says

    Cohen is surrounded by earthly love and a heavenly presence. I love all the pictures, the wires and monitors can't hide what a beautiful baby he is. My prayers are for peace, wisdom & healing for you all.

  9. says

    I'm sending all my love and prayers to you and little Cohen!! That is so scary. I'm glad he's doing better – and glad he has such awesome doctors!!!

    You guys are amazing. I don't know how you keep such a positive attitude during all of this.

    And I have to say – I sort of like the lack of medical terms. It makes it a lot easier for us non med people to understand. 😉

    I hope tomorrow is another good day!!

  10. says

    Praying for you and baby Cohen. He is GORGEOUS. Such a precious little guy. Thank you so much for keeping us posted.

  11. says

    Your pictures are both beautiful and heart wrenching. I know what it feels like to see your baby hooked up to all those machines. My daughter had a cute little sign in her NICU too :). You seem to be handling this so gracefully, given the stress you're under. Thinking of you and your family.

  12. says

    Praying for you guys and sweet baby Cohen! How presh is that little sign and it soooo matches your bloggy :0)

    I am sorry to here that he had a rough day but I am happy to hear that he dodge that bullet!!

    In my prayers

  13. says

    I'm still praying for sweet Cohen and your family. It is so wonderful that you have been blessed with the wonderful nurses and doctors. God is going to take care of him. Stay strong.

  14. says

    Long time reader, first time commentor, can't even remember how I found your blog.

    First, congratulations and welcome Cohen! Second, I'm not a particularly religious or faithful person, but I can tell you honestly that I have been praying for you and your little boy harder than I ever have in my life and will continue to do so the best I can.
    Gentle hugs to all of you!

  15. says

    the pictures are so great. i know that someday you and Cohen are going to look at those pictures and he is going to see how much his mommy loves him. your eyes say it all, Megan!

    i'm so happy that he dodged hat bullet. i'm praying without ceasing. he's such a precious little boy!

    also– his little room looks so cute! i love his blankets and signs. y'all have him set up.

    and brent is such a great daddy. it's so obvious he's doing a great job of taking care of you and being the upbeat, positive daddy that cohen needs.

    love love love you all!!!!

  16. says

    I'm praying for Cohen and your family. He's just precious, such a sweet little prince. I love that he has a full head of hair. Continue to stay strong.

  17. says

    Cohen is such a gift from God and he is such a strong little boy. You and Brent are amazing parents, and Cohen knows how much you love him. I'm sending lots of prayers your way!! Thank you for taking the time to update us!

  18. says

    Oh Megan, I have tears running down my face. Those pictures must be sooo precious to you. I'm praying and praying for you, Cohen, and Brent. Imagine how many of those prayers he has already answered- God has surrounded you with wonderful doctors and nurses- a definite answered prayer!

  19. says

    He is so perfect. Keep your chin up and know that SO MANY people are praying for you guys every minute of every day. Can't wait to hear more GOOD news!

  20. says

    The picture of him gripping your gloved finger brought tears to my eyes. He knows you're his Mommy!

    I've been following you for a while and I, too, have been praying for your sweet baby.

    Keep your heads up, and stay strong. :)

  21. says

    I've been following your blog for sometime now. I haven't felt the need to really comment because you have such strength and happiness that I never thought anything I would say would be good enough… I'm always praying for you guys and hoping for the best.

    I haven't really been choked up my any of your posts because you are pretty matter of fact and your delivery is so smooth and calm.

    Today when looking through your pictures I was doing great. Thought, awww, these are great what great pictures. Then I wondered if your photographer was staying with you the whole time or if this was just you guys passing the camera back and forth…

    Either way, then ones of you just looking and gazing at Cohen… omg. I welled up with tears…….

    You guys are amazing and so is Cohen.

    I'll continue to pray…

  22. says

    WE ARE PRAYING FOR PEACE FOR YOU ALL AND FOR COMPLETE HEALING FOR COHEN! God is good all the time, all the time God is good. He never gives us more than we can handle and He will pull you thru.. Stay strong.

  23. says

    Megan, the pictures of you looking at Cohen just break my heart! I just watched the slideshow of his delivery for the first time and I am a mess right now! I am still praying SO HARD!!

  24. says

    Tears came to my eyes reading this, and seeing the photos. This must just consume your heart completely.

    I left a comment yesterday about our situation — our baby boy (I'm 23-1/2 weeks) diagnosed with a serious CHD and looking at a series of operations like your little guy is. So this hits close to home. Really, really close.

    Whew. I hope and pray that God will strengthen and sustain you during this time — I know it's more than anyone can bear.

  25. says

    What a rollercoaster of emotions!!! Baby Cohen is just such a gift and I am just praying all of this is going to be ok. I cannot imagine how you all are feeling, but you sure are doing a great job of keeping it together. No way could I keep up with a blog while all of this was going on, but maybe it would be like therapy to me – and maybe it is an outlet liek that for you. No matter what it is, it is strenght and I admire you and your husband. Prayers coming all the time your way for baby Cohen and your family. Trying times. I love his room, what an adorable sign. So cool these wonderful people at the hospital are thinking of ways to make things better and decorating his room is definitely something fun and exciting to do to put a smile on everyone's face. I will keep praying!!!!

  26. says

    I am so glad he made it through surgery well! Megan, my heart is breaking for you guys having to go through this. And for that little babe.. But he's so strong! And he has so many prayers coming his way.. Keep your head up sweet girl.. Love you all

  27. says

    I am so amazed and inspired by you & Brent's strength. In the "scrubbed in" pictures, you look like a cute little nurse, not someone who just had a major surgery of her own!

    Still praying for you all. I keep a little note on my desk to remind me when I get distracted at work. :)

  28. says

    So glad he is stable. You are so strong to see him with all those wires. I continue to think about him and pray for a full recovery.

    Stay strong momma (and dad).

  29. says

    My sister is Jenjen from Tatertotsandjello. She sent me over to read your story. It is all too familiar to ours, although our son has different heart issues, but also complex like your sweet son's. Jack is turning 12 this summer and is headed off to baseball camp. We never imagined it would be possible when he was just 3 days old and recovering from his first of three open heart surgeries. I pray that your son will see similar blessings. Your slideshow is absolutely beautiful. I love the song that was chosen for it and the pictures are precious. I'll check back in to read your progress. Feel free to get in touch with me anytime.

  30. says

    I love his blankies and the sign! So precious. I've been thinking about you two and your sweet baby daily. Lots of prayers going out for y'all! Don't worry about not updating as frequently as you feel like you should – everyone understands you are mama first and blogger second. :)

  31. says

    TEARS. It's NOT easy. It stinks. I'm so sorry. When I see you laying by his bed holding his finger, my heart aches for you. I have so many pictures in the same scenario. I even had to take a picture of Owen's hand once because it was the only thing NOT covered in tubes.

    Don't worry about the medical talk.. you will know it all too soon.

    We're praying for sweet Cohen. Try to get some rest yourself. My Csection scar opened up because I did TOO much going back and forth to the hospital and walking around.

    You two are doing great!! Thanks for the updates!

  32. says

    Megan and Brent,
    I am praying for y'all and sweet baby Cohen. I have a heart baby. I know that the ups and downs are so fast and so hard to take.
    Cohen is such a sweet little man and so very loved. You will be in my prayers constantly.


  33. says

    Praying praying. He is so beautiful. I have been praying every night and morning. Yall have been on my heart so much. I am also praying that God gives you and Brent comfort or and peace and strength for all this. lots of LOVE and HUGS!!!

  34. says

    Still praying in Alabama for all of y'all… Cohen is so beautiful. The photos of you looking at him brought tears to my eyes. The love of a mother is so awesome and it comes through in the photos.

    I've seen many miracles in my almost 50 years…several just recently…

  35. says

    Your posts are really touching and I'm crying every time I read them. Thanks for sharing it all with us. You're going through a lot. It's so heartbreaking seeing him in this condition with all those tubes and stuff. Really…I have no words. I just hope so much that this little angel will heal soon and that he'll be a strong boy. Praying for you guys!

  36. says

    I am praying for your precious Cohen and you guys as you walk through this!! I know all too well what it is like walking through this! Praying that the Lord will give little Cohen earthly healing!

  37. says

    Megan, my heart just break for you that your sweet baby boy has to go through this. I am crying seeing him hooked up to see many monitors and wires, I am so sorry friend. I am praying for a speedy recovery for Cohen. I am praying for you and hope you are doing as well as expected and a speedy recovery for you. I know the C-section is tough, but it should start getting easier soon. Much love!!!

  38. says

    Those pictures brought tears to my eyes.. I'm a hot mess when I start reading about your amazing little man, Cohen.. He is so obviously loved, even by the staff there. Sending continued thoughts, love and prayers to you and your family. Will be watching the updates as they come in… Love from Tulsa.

  39. says

    I hope you guys had a good night sweet lady… I am praying for you guys!!
    And oh my goodness – he is the cutest baby on the planet! Seriously :)
    You look beautiful too!!
    And looking forward to the next update.

  40. says

    the pictures are so touching, the ones of you looking at cohen made me cry. i've been following your blog for so long now and seeing you go through this just breaks my heart. you and brent are such strong people! so positive! simply amazing parents!
    i am praying!! thinking about you all.

    p.s. you are doing a great at keeping us all so informed. don't stress about it. you have so much going on hun.

  41. says

    I love all of these pictures, especially the ones of Cohen holding your finger just beautiful!!

    Still praying for you and baby Cohen God has a plan and I know he has hands upon Cohen!!

  42. says

    You are doing such a good job updating. I can't imagine how it feels to look at your baby before he goes into surgery. You are fantastic and I'm so glad Cohen "dodged a bullet".
    He is precious!!!! I'm praying for his recovery.

  43. says

    Praying for you and checking in on your blog. My second son had open-heart surgery when he was five months old, and those pictures sure did take me back!
    I have had three C-sections, and it wasn't until my third that I experienced that burning that you talked about. WOW it hurt!! Mine lasted, off and on, for about three weeks. UGH!! Hang in there–you'll learn how not to make sudden movements. Hope it gets better.

  44. says

    Continuing to send love and prayers from GA. Thanks for the pics of your sweet baby Cohen – he is precious. May he have a speedy recovery!

  45. says

    Cohen is just BEAUTIFUL! I loved the slideshow! God has created another angel….so happy for you both I just can't stand it! He's going to be okay, all these people are lifting him up in prayer and I just KNOW that he is going to be okay! You keep us updated. I don't know if you will ever be up for visitors but I would love to come visit whenever you are up to it. Or maybe send you something for Cohen. Praying for you always-<3 Becky Branch

  46. says

    he is adorable and you can see the love in your eyes in the pics of you sitting next to him!!! He knows his mama is with him and he is so cute holding your finger! Praying for him, you, brent and the family through all this!! you are so strong and that will be a great help to Cohen!

  47. says

    He is just beautiful! I love all of his hair :) I'm hoping our baby has hair so that probably means she'll be bald! :) Praying for your sweet boy!

  48. says

    This post made me cry. I'm so glad Cohen is doing so good. And what you are going through is completely different than what we went through but so much of it is similar and it brings back so many feelings. Harper was flown to Tulsa to be put on ECMO so I know exactly how you feel about that. And she was in a coma for weeks and that was hard. I'm praying for you because I know how overwhelmed, tired, in pain, stressed, sad, scared,loved and blessed you feel. Praying for Cohen EVERY day.

  49. says

    I ready your blog thru Kelly's.. We too had a baby in the NICU because she had a volvulus (or twisting) in her intestines.. The first day they told me that she needed surgery and after her surgery they said that's all they could do and she had to do the rest or let her go to god.. But Miss Krishani Faith is a fighter(she spent five weeks in nicu and is now 11 lbs and at home!!) and I know Cohen is too! They are both miracle babies and we are praying for Cohen and your whole family!!! Lots of hugs and prayers from Houston!

  50. says

    Megan – I've been reading the blog after finding the info on the Hudson's blog. I must say – you've had me in tears more than once. The strength you and your husband have shown this entire time is amazing. The strength that baby C is showing right now is beyond belief. Prayers are coming from afar! With a boy due in October, I hope that I can have half the strength you've shown if anything goes wrong. Thank you for sharing your story. I look forward to reading more updates!

  51. says

    The pictures of you with Cohen before his surgery are amazing – you can see how much you love him if that makes any sense! I didn't realize "dodging a bullet" was a medical term. That term was used on my son after he dodged his and he's doing just great now! We're continuing to pray for little Cohen – he certainly is a trooper!

  52. says

    Hello, I have been following your blog for a month or so. I don't know if you know about Kelly's Korner. But her daughter also had heart issues and surgery soon after birth. I emailed her and am having you added to her prayer blog.

    My thoughts and prayers are with you and your family. I have a special needs child who is now 18. He was misdiagnosed from birth until 7 years of age. We spent months every year in and out of the hospital. It is no fun. Once he was diagnosed correctly his life changed forever….just as Cohen's will with the wonderful doctor's, medicine, and prayers.

    http://www.lifewithcms.blogspot.com is my blog I started on him. (Although it is not as far as I want it to be).

    He is getting ready to have yet another surgery on Thursday himself. It never seems to end.

    Again, prayers that Cohen's bounces back quickly. I love the pictures.

  53. says

    Beautiful Cohen, Megan and Brent…I am a stranger to you but was directed to our blog. My prayers are with you. I catch myself saying, "God be with Cohen" literally dozens of times a day. I am a pedicatric ICU oncolgy nurse so in a different way I understand the hours you spend at Cohen's bedside, the tubes and wires that keep you from him, the millions of questions that enter your mind just as you attempt to drift off to sleep. Your family is prayed for. Your MIL's photos are so beautiful. There were a couple tonight of you that took my breath away Megan as I could liteally feel your pain and heartbreak as you gazed on your beautiful boy. Brent you are so right, Cohen has the heart of a lion and the love and prayers of thousands.

    God Bless Cohen and his mommy and daddy!

  54. says

    Thank you for the updates! Praying for you guys and your sweet little boy! I'm glad to hear that things seem to be going as well as to be expected. What a sweet nurse for making that sign! Precious! He looks great! What a little trooper!

  55. says

    I have been following your blog for some time now, praying for both you and Brent as you prepared for the arrival of your precious Cohen. And now that he is here, I am especially lifting your sweet boy in prayer and asking for our merciful Lord to place His healing hands upon Cohen, to bring him through this storm, and to hold you and Brent in the palm of His hands, providing you with the physical and emotional strength that you require. I am already thanking and praising God for making Cohen healthy and whole, for that is what I truly believe He is going to do!

  56. says

    I read on another blog that Cohen is having some problems. I just want you to know that I am praying like crazy for that precious baby boy. For you and Brent as well because I know you are probably both exhausted and there is no rest for the weary (except the rest and comfort that only Jesus can give)!! I'm so sorry that your sweet baby is having to go down this rough road. Praying, Praying, Praying
    From Florida,

  57. says

    I am praying for you, your husband and your sweet baby Cohen. I can't imagine what you are going through. My little girl is due in a month and tears just flow looking at the pictures of your and your baby. He is a precious gift. I pray that you can hold him soon. Sending lots of love. Anna

  58. says

    Hello, I popped over from my blog friend, Summer's blog. I followed the link and read about your family. I had read your blog prior to you giving birth. I am sending lots of hugs and prayers your way and will continue to follow your blog. If you need anything let me know, I am in Dallas suburbs. May your little sweetie, get well soon. He is precious. Please take care of yourself! Barb aka snowmanlover

  59. says

    Hello, I popped over from my blog friend, Summer's blog. I followed the link and read about your family. I had read your blog prior to you giving birth. I am sending lots of hugs and prayers your way and will continue to follow your blog. If you need anything let me know, I am in Dallas suburbs. May your little sweetie, get well soon. He is precious. Please take care of yourself! Barb aka snowmanlover

  60. says

    Megan –

    I've been reading for months but have yet to comment. I hope you all are doing okay tonight. I've been thinking about you and your sweet little Cohen, who is too sweet for words. It is obvious that you are a mommy who would move mountains for your baby boy, and I pray for comfort and healing for your entire family tonight.

  61. says

    I didn't know what half the medical terms you were talking about in this post. My husband is a dentist, so I had him tell me what most of it was talking about.

    Please know that you are in my prayers! My husband and I met today 4 years ago (a lucky day!). I hope our luck and my prayers can go with you today. Much love, Jen

  62. says

    You and baby Cohen are in my prayers today. My hubby is a dentist and he had to explain many of the medical terms you talked about in your post.

    My husband and I met today 4 years ago; today is lucky and wonderfu day! Your family is in my prayers today! Much love, Jen

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