Wednesday, April 6, 2011

The scariest moments.

This is Adam, Grace's father. Miranda has been at home with the older boys the last few nights, so I will be doing the update. On Monday evening a large clot of blood that had been building up in the lines of Grace's ECMO (Heart Lung Bypass) machine dislodged itself and began to travel through the machine. It stopped in the artificial lung and immediately shut down the machine and caused Grace to be off of support. I was in the room visiting when this happened. The room turned into a frenzy so fast that it is a blur to me now. They immediately called for her to be placed on an oscillating ventilator and soon thereafter they started using chest compressions to keep her alive. A new artificial lung was brought in to replace the clotted one, but it also clotted, almost immediately, and they required a third one. A third lung was not ready however so Grace had to be kept off of her heart lung bypass for roughly 20 minutes. The doctors allowed me to stay in the room, but due to the large number of people at her bedside, I could not even see how she looked. Eventually the third lung was installed and Grace began to slowly start to receive ECMO support again. She did however prohibit flow slightly so they looked at her heart with an ECHO and discovered that the cannulas (tubes that go into her neck from the ECMO machine, into her heart to deliver blood flow), had shifted and was now impeded by a portion of her heart. So Grace underwent a third surgical procedure to move the cannula, and restitch it into place. The surgeon had to reopen her neck incision to do the cannula manipulation. After the cannula was repaired Grace was back on full ECMO and was able to stabilize eventually. Yesterdays adventure rocked the foundations of my soul. I have never before in my life, experienced emotions like the ones I felt yesterday when I though that I was going to lose my sweet baby Grace, right there in front of my eyes. I thank God, and am eternally grateful to Him, for bringing her through this. In the midst of all this chaos though, Graces right lung, her good one, was able to inflate slightly from the pressure of the ventilator. So in my weakest and darkest moment, God performed a miracle, and gave me hope to guide me through. Yesterday was a day like I have never known. Grace has now recovered and looks great! Her lung volumes are improving, and she opened her eyes and stared at mom and dad yesterday while we held her sweet little hand. As a result of the confusion of Monday night, the surgeons decided to change out her ECMO machine with a fresh one, and try to prevent a reoccurence. After the changeout it was decided that she should go on a type of dialysis to try and help her kidney's and prevent any damage to those. There was also a good deal of clotting in the bag that is containing her intestines while her body makes room for them. So the surgeon had to remove the bag and clean out the clotting. Miranda and I were both able to stay for this procedure, as it was done bedside. During the procedure I witnessed my sweet little girls stomach contents, laying on a surgical cloth, with a pesons hands inside of her stomach. A quite peculiar situation for a person like my self, who is not very exposed to the medical world.  I am heading up to see her now, but more will follow.


  1. Miranda, I'm sure none of us can know all the feelings you experienced during that critical time! It sounds like you're felt a good measure of God's presence. May He continue to heal Grace and be with you, Adam, and the boys. God bless, and I'll see you, Adam, and Grace in the next day or two. Pastor Dave

  2. Miranda --

    Scary moments is a completely appropriate headline for this post. I was scared for you all a I was reading it. I am so GLAD that little Grace is still doing ok. I think about her daily and will continue to do so as you go through these days in the NICU.

    Janna Caravia
    Due 4/26/11 with CDH Baby Boy

  3. Wow, how very scary! We had some moments like that as well and there is nothing worse than watching your baby stuggle and there is nothing you can do as a parent but watch and pray. So glad they were able to get things situated and Grace is back on track.

    I am thinking about your family every day and praying for some smooth and restful days for Grace!

    Mom to Andrew
    ECMO/CDH Survivor

  4. I am so glad that Grace is okay. I can not imagine the emotions that you were having at that time and am so glad everyone came through! I pray daily and I keep my husband updated we are all praying for little Grace. She sounds so precious and i pray she gets better.

  5. Im so sorry you had to see that. We too had a similar story and it is heart wrenching. Prayers for more miracles in precious Grace's life!!! Thanku for updating...
    Devon, mom of Camden

  6. Adam and Miranda,

    Wow has time flown. I remember sitting in the NICU right across from Miss Grace when this happened. I remember it so vividly, it's scary even now. Tim and I were giving Levi a bath and I looked over and everyone in the room was watching the clot float through the tubing. I remember signing the consent forms for ECMO and thinking, "How can they say that the machine can fail? How can I sign this form knowing there is a possibility that my child won't fail but the machine will?" And yet, you sign because you know's it's what's best and it's what they need. I'm reading your posts and it's bringing back so many memories. We pray for all of you often. Levi even has a beanie baby that is a praying rabbit and the name of it is "Grace". He will grow up remembering Miss Grace, and Tim and I will never forget any of you. We hope all is going well with her. I'll continue reading the posts. You're such brave parents. Hopefully when we come back for our next appointment you're all gone (as much as we would love to see you). Prayers are sent to you.

    With Love,
    Danika, Tim, and Levi