Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Friday, September 23, 2011

Day 11 - 11:20 am - Big boy bed!

So not only is my baby's chest closed - but he can be moved around!  I came into the PICU today and Trey was in a different, bigger bed.  This means that he can tolerate being moved around more... which is a great thing!  The other day he was just having problems being turned from side to side.  Apparently, he and his vitals were ok with being transferred from one bed to a bigger one... yay!  This morning his vitals are about the same.  His blood pressure looks good and the pressure in his left atrium is a bit up but still lower than when he first came off ECMO.  Nothing near what it was like when they first attempted to take him off heart lung bypass after surgery.

Wow, ok, so his nurse went to lunch and since he's doing better they just have another nurse float in and out rather than having the charge sit here the entire time to watch him.  Well, a few minutes after he left his heart rate went all funky on the monitor and the alarm sounded.  I figured it most likely was a probe that had come a little loose because all of his other vitals were ok but it still scared me a bit so I went out to find someone.  I could only find the resident so she came in to check it out.  Turns out one of the wires to the lead was indeed loose and she just fit it back in.  At Children's if that happened I knew exactly what places to check to get it placed again but now I'm at a loss - for all I know the lead could have been located in his heart and I'm not messing with that!

I also wanted to address something else today... a lot of people have been commenting and telling me how impressed with my strength throughout this total ordeal.  Really, I don't feel all that strong.  It's just something that you do.  I don't have a choice in holding it together through this all - I just have to do it.  I will tell you what has helped me greatly through this though... my faith in God.  I believe that there is something larger than me.  I have a creator and he is not going to abandon me in my time of need.  I truly believe that I am never alone - he is constantly giving me the strength to make it through this.  It's not me, it's God that is holding my head up above the water to keep me from drowning.  Throughout this I have stood strong in my faith that with whatever happened - God would help me through it.  I didn't have a choice in the matter.  Me having a breakdown wasn't going to change the fact that Trey had a heart defect and it had to be fixed.

I also think that going through the NICU experience last time helped me through everything this time.  When we went to the ER the first time I definitely the complete opposite of calm.  That's not to say that I'm completely calm this time around - I might appear to be but there have been many times during this visit that I thought I was going to have to run to the trash can to get sick because my stomach was so crazed - but at the ER the first time I cried and was hyperventilating.  I couldn't even stay in the room because I was so upset and unnerved.  I was so upset that they brought the hospital chaplain to me and asked me if I needed to talk. She was a lifesaver at the time.

See, it's amazing how God places the right people in the right places at the right time.  God knew that I was going to need help many times through this journey.  The chaplain is not always in the hospital - it's amazing that she was there right when I needed her.  She prayed vigilantly outside of his room.  She recited scripture to us to remind us that God was/is with us.  Just like this last time we went into the ER, the first person I saw was a nurse that goes to my church.  It was so incredibly comforting to see her and have her be able to help me out in the hospital.  Plus, we had the same exact ER doctor... made it so much easier for me because he knew exactly what happened last time.  I didn't have to catch a new doctor up to speed.  This doctor kept in touch with Children's as well so I didn't have to explain everything that happened there.  All he asked was... did you see a cardiologist there?  I said no and he was on the phone right away calling one in.  God has truly placed everyone at the right places at the right times - it's too amazing to be just coincidental.

I also want to thank everyone who has been praying for Trey and my family.  We definitely can feel it.  It's through God and through all of your prayers that has given me all of this "strength."  It's definitely not me.  I would have never been able to make it this far alone.

Anyhow, I do think that having gone through an experience one time before helped a bit.  Plus, last time there was more unanswered questions.  This time... yup, he's having problems... oh, and here's why!.. and yes, we have a way to fix it.  Yes, it's still going to be a long journey till his heart is going to become strong again but at least I know, we're not along on this journey.  God is with me, he is with David, he is with my other two kids and most importantly, he is fighting with Trey.


  1. He is with you, Randi! My Community Bible Study prayed for Trey yesterday specifically, along with my class of Kindergarteners. The kids are also praying for him this week. Noah and Evan have been praying for Trey. He is being LIFTED UP! I am so glad that you can feel that constant presence and will continue to pray that His peace will fill your heart.

    Love to you all,

  2. Thank you for this blog post and for sharing your amazing faith. He is guiding you every step! Love you!