A day of many accomplishments @ 6am Coles breathing tube test began. In this test the machine is turned off and cole shows what he can do on his own for the next 2 hours they will take the breathing tube out. I'm sitting here literally holding my breath. He flunked the test and pretty much rode the vent till the nurses decided hey buddy enough is enough. At about 2pm his vent was removed. Cole did great without it his voice was raspy and still is but we are so happy the vent is gone.
Coles chest tube and pacemaker wires have also been removed today. It was a big day of accomplishments. All meds have been turned off as well. Wow no oxygen no meds and word on the street is we bust out of ICU tomorrow morning around 10am. I am happy we are gonna move to the floor but worried at the same time. That means closer to going home and well hello there are no nurses at home.
Angie from little mended hearts of puget sound came to visit today and brought us a goodie bag. Thank you Angie it brightened up our day to have a visitors. It was my moms birthday today and she was here for most of Coles accomplishments. Here are some pictures of our big day. And more post to come as we will still be here some more days.
This morning when the breathing test began
Should be the last picture on these machines
The view from behind the scenes look at all those wires.
Cole fighting he just had flunked his breathing test. We will try again later after a quick nap.
No more chest tube or pacemaker wires yay. His zipper is looking mighty fine thank you Dr. McMullen :)
No more vent no more vent
At last my love has come along. In mommas arms eating and safe where he belongs
Hey this place is kinda nice when you don't have tubes shoved down your throat
When you loose the tubes you get a bigger bed. SCORE
Cole sleeping in his big comfy bed and Daddy prouder than ever.
Miracles really do happen and I know a miracle his name is Cole Anthony
He looks amazing. Such a sweetie! I wish I had thought to take so many pictures. He has come so far. Soon you will be home safe & sound :)
ReplyDeleteAww he looks good! Keep fighting baby cole!
ReplyDeleteHi Rachelle - I found you (your blog) on the TAPVR Facebook page ...
ReplyDeleteCole is a beautiful boy! ANd a strong boy indeed!
My son Tyler is 8 weeks old & he was born on May 16th (one day before Cole!!) ... with TAPVR ... unknown to us at the time. He was slightly gray after he was born but then got color back. His 02 levels were acceptable (99%) so the hospital said his coloring was due to just being a newborn. THey checked his 02 levels nightly and it was 'normal'. He was discharged home with us like any normal baby would.
We ended up bringing him to the ER 4 days after he was home and 12 hours later he was diagnosed with TAPVR & being shipped off to Columbia Presbyterian Childrens hospital in New York City (1 hour from us) for emergency open heart surgery. Like you, we had NO idea. It's just not something that is screened for in utero. :(
He was 8 days old when he went through what your little boy is going through now. My heart goes out to you - I totally understand what you're going through and it is so so so hard! God bless.
p.s. I am a fellow blogger too - I had been documenting my 3 year old daughter's life - and just started writing about TAPVR once Tyler was born...
Cole looks great! It's so nice when they start taking wires and tubes away. And im glad you got to hold him! Hooray!
ReplyDeleteStay strong, Mama!
YAY! The best feeling ever is holding your baby after all the tubes and wires are out. So happy for y'all!
ReplyDeleteIzzies Momma (Wendy)