And today we give thanks�..

 

Thank you Mom, Dad, Papi, David and Katy, Nye and Ruby, Michael, Monika and Tyson and our extended famililes in the U.S., Germany, and Austria. We love you�Wir lieben euch. 

 

Thank you Dr. Doolin, Michelle, Deb, Heather, Dana, Lisa, Anne Marie, Barb G., Barb B., Tracy, Aileen, Teresa, Bridget, Lynn, Cat, Eve, Kate, Chrissy, Peggy, Kasha, Maggie, Pat, Cathy, Jen, Betsy, Amy, Tonja, Linda, Megan, Deb, Karen, Allison, Evelyn, Elizabeth, Jen, Babette, Sue, Tracy, Daisy, Dr. Munson, Dr. Rintoul, Dr. Peterside, Dr. Simmons, Dr. Meyers, Dr. Harris, Dr. Lioy, Dr. Szepanski, Dr. Lim, Dr. Collins, Dr. McKenzie, Dr. Ades, Dr. Bernbaum, Kelly, Jo Anne, Amy, Lydia, Judy, Diane, Leanne, Antoinette, Paula, Sherita, Michelle, Grace, Maude, Tracy, Crystal, Ray, Heather, Pat, Veronica, Venus, Liz, Cathy, Maylene, Nelda, Regina, Christy, Lisa, Jesse, Randi, Eden, Sophie, Rowena, Rosa, Debbie, Shirley, Emmy, Sonja, Jackie, Dr. Chuo, Dr. Hanna, Dr. Lambert, Dr. Sarantino, Dr. Weinberger, Dana, Val, Ken, Patty, Anishka, Rene, Dolly, and all of the staff and CHOP and RWJ whose name we are forgetting or didn't know. Bernadette, Kelly, Patty, Jack, Heather, Keith, Jessica, Brian, Ellesheva, Zev and the countless other families we met and were inspired by.

 

Thank you all of you who have been supportive of us on this blog: Dobie, Gordon and Jean, Kathe, Sue, Kim, Patricia, Susan, Shannon, Anna, Jessica, Melanie D., Jen, Cheryl, Elizabeth, Carol, Missy, Polly, Cheryl, Valery, Bethany, Jenny, Brian, Marlene, Lynn, Christine, Ivy, Lisa, Jeremy, Linda, Brian, Melina, Kayelily, Donna, Erik, Cherri, Emily, Kate, Jim, Noor, Allyson, Chris, Randy, Jenny, Janet, Stuart, our friends and colleagues at Princeton University and Stanford Hospital.  Thank you to all of you who sent books through Sue�s �book drive� and thank you to my mom�s colleagues for giving us a �shower�.   Anyone else who we have overlooked, including those of you who we have never met, who are "anonymous", who took the time to post your support, thank you.

 

And finally, thank you, to our son. We are humbled by your strength and your courage. You are our hero. There simply are no words to express our love for you.

 

Tuesday, 10/4

I really am trying to close up this blog so just a reminder that the main posts will be on www.edisonathome.blogspot.com.

It has been a long, long few days. You know it's been a long few days when you hold your cell phone up to your ear for a while waiting for a dial tone. Things are okay, but not resolved. They took Edison to the O.R. today to dilate his esophagus in case that was making him pool saliva and get choked. It's not, his esophagus appears fine. While in the O.R. he turned blue again and completely stopped breathing for about 15 seconds. Our surgeon described it as a "functional" issue because his tracheomalacia (the floppy airway) is just so severe the smallest thing can make him lose coordination. When we asked how you fix this he said that you fix it the way nurses in the 1940's fixed babies with the same issues, close supervision and being very careful. So basically we just have to wait it out until his airway gets stronger. Let me tell you, that's a scary place to be.

So they will plan to do a sleep study later this week to really examine what all is going on. In the meantime, our little boy, who's 8 months old today, continues to smile and charm us all. Thank you all for your calls, emails, and well-wishes of support. We love you.

Monday, 10/3

I don't know where to update anymore because all of our chapters are getting mixed up! Unfortunately I need to be brief because we are waiting for the surgeon, but Edison had to be readmitted to the hospital yesterday. Our home health nurse came out for a visit and Dinky started to get fussy and then turned blue, which he hasn't done in months. It was very scary and EMS was called and it was frankly my worst nightmare. So...we're here. He's back to normal, in fact more normal here at his first "home" than he was at home home. So we're waiting to talk to the surgeon to find out what he wants to do. I'll definitely keep you posted and update when I have more thoughtful time to write.

Home is where the heart is...here's our heart. 

And away he goes! 

Our home away from home... 

What's happening?? 

His walking shoes! 

Dad packing up! 

A sad goodbye with his "other mom" Michelle 

I don't want to let go! 

I'll miss you Heather! 

I'll miss you Dana! 

Thursday, 9/28

Well, it's Dinky Eve. I am in a state of joy, panic, elation, fear. I think that's a pretty normal place to be for any new mother about to come home with their bundle of joy. As I left the NICU today Patty, one of the other mothers, said, "Just think, Jen, it's your last day leaving without a baby". That took me back to 2/9 when I left Robert Wood Johnson after having my c-section. That was one of the saddest days, leaving the hospital empty handed. I had watched enough "Baby Story" on Lifetime to know that I was supposed to be tucked into my wheelchair with a tightly swaddled pink and blue burrito. So things are different, we're spending tonight putting up IV poles and organizing g-tube supplies, but the sentiment is just as sweet. He's coming home.

I have had a lot of protests about ending the blog and that support means so much!! I do feel the need to have closure on this chapter of our lives, but I don't want to do so at the exclusion of you...our family, friends, colleagues, nurses, and even strangers who have been SUCH a vital part of this journey. So, I am creating a new blog that I will update not daily, but as often as I can. The address will be www.edisonathome.blogspot.com. I'll post on here again tomorrow to let you know that we're all home safe and sound!

This is one of my favorite pictures of the past 8 months. This is what it's all been about.  

Tuesday, 9/27

Well, we made it through our first night together! Edison did better than we did. He literally slept from 9 pm until we finally woke him up at 7:30 am. He didn't wake up once. I think he was just in such a deep sleep without the usual lights, bells and whistles of the NICU environment. We, on the other hand, slept fitfully...at best. I think we were both nervous and then Edison is a noisy sleeper! Starting at about 4 am he starts working on his "morning constitutional" and let me tell you, it's quite a production. I finally snuck out at about 5 am to get reassurance from the nurse that this was normal. Martin said he sounded like a constipated Donald Duck! It was so funny.

So, we're getting ready for Thursday! Our equipment should arrive tomorrow and then we'll be all set. I can't believe it's really happening. We have prescriptions and everything! We'll have a nurse come visit on Saturday and then we'll see our pediatrician on Wednesday. Pinch me! If everything goes as planned Michelle will be our nurse on Thursday. It's only fitting she should discharge her "Stinky Dinky".

Monday, 9/26

Not much of an update today but we'll have lots tomorrow! Tonight Martin, Edison and I will spend the night in the family sleep room together. It will give us a dose of reality as we wake up at 4 am to give him medicine and hang his feeds throughout the night.

Tomorrow we have a family meeting with the neonatology and surgical teams. Hopefully we'll get an exact date at that time. Even though I'm scared I'm also just ready to go!! So..stay tuned for tomorrow!