Post Surgery: Day 6

Dr. John took out Zoe's catheter today.  She is no longer on the peritoneal dialysis and is filling diapers almost every hour.  Yay for diaper changing now!  

Zoe is still very sleepy, so she has been taken off the fentanyl drip, but still getting morphine and tylenol for the pain.  Hopefully not having the constant fentanyl will help her to wake up some more.  

They started weening Zoe off of the ventilator today and so she is practicing breathing on her own and when she gets tired, the ventilator kicks in.  The plan is to take her completely off of it early tomorrow morning.  I can't wait to see her whole beautiful face again without that big tube and white tape!  

We are getting closer and closer to moving down to the Pediatric Ward and then eventually bringing our sweet baby home!  

One of the greatest resources we have as a family with a heart baby is our case managers.  Their names are Tami and Paula.  The first time we met Paula was when she took us on a tour of of the Children's Hospital several weeks ago.  We didn't meet Tami until right before Zoe's surgery, but soon found out that she is LDS and we have a lot in common!  She has four kids of her own and has been a foster mom of two children and helped make their adoptions possible.  Both Paula and Tami check in regularly just to see how we're doing and fill us in with information we need to know.  They are a great support.  Today, Tami told me that they think Zoe will be in the Pediatric Ward this weekend and going home around the end of next week.  HOLY JUMPIN' UP & DOWN... that is so soon!  Andrew and I anticipated 4-6 weeks after birth, so the idea of Zoe being all ours next week is just bananas!  But, I'll take it!

As I was reading the Randall Children's Hospital fan page on Facebook yesterday, I came across a support group called Mended Little Hearts of Portland.  They also have other chapters all over the country.  This organization holds monthly group meetings at Randall Children's Hospital, parties, picnics and continuous support for families impacted by congenital heart defects.  I haven't really been ready to reach out to other parents of heart babies yet, but decided to share a little bit about Zoe's story with this particular Facebook group.  

And this is how it went...

I am so grateful to have found this group through the Randall Children's Hospital fan page. I just gave birth to my beautiful daughter Zoe Grace, 1 week ago today. At my 20 week ultrasound, we were given the devastating news that Zoe has Hypoplastic Left Heart Syndrome with an Atrial Septal Defect. She had her first open heart surgery last Friday and is currently recovering in the PICU at Randall Children's.
I hope to attend your support group in the future. In the meantime, do any of you survivors or parents of s heart baby have any advice?

Thank you!
 ·  · Yesterday at 12:25pm near Sherwood

    • Mended Little Hearts of Greater Portland We are so glad that you found us! My name is Pam and I am one of the coordinators for the group and I know I speak for many of us heart parents when I say that some of the best advice is to know that you are not alone and reaching out to other families when you are ready (which you just did!) can be so helpful.
      I would love to drop off a care bag tomorrow to the hospital for you if that would be ok. We have bags for families that have a child that is in the hospital for open heart surgery.

    • Mended Little Hearts of Greater Portland Hi Kacie, My name is Jim Ferretti. My daughter Lilli has HLHS as well. She is 3 1/2 years old and scheduled for her 3rd surgery next summer. I am happy to talk to you or your family at any time about our experience and what you may expect. Remember all children are different and what we dealt with may not be what you will go through but we are all in this together. You are now part of a family that not a single one of us want to be part of but we are all thankful we have each other to lean on.

    • Mended Little Hearts of Greater Portland Hi Kacie, Jim and I (Pam) left a care bag at the nurses station for you this morning :) Hope all is well with your little ones recovery
      5 hours ago · 

    • Kacie Armitage Wow, thank you so much Jim and Pam for the generous care bag. What a blessing! I am already a fan of MLH! I am at the hospital now and our little Zoe is a miracle. All of these heart babies are. If you care to know more about our journey, I update my blog regularly. www.ArmitageHome.blogspot.com

      Thank you again!

How amazing are they?  In less than 24 hours, this very generous bag of goodies was delivered to Zoe's room by LMH coordinators, Jim and Pam (I couldn't help but think of The Office when I read their names)!  I couldn't believe how quickly they were there to support our family.  I can't wait to get more involved with this fabulous group!

The Zoe Show

Nap Time

Wakey Wakey, Eggs & Bac-ey!

For a little while, Zoe was having a tough time breathing and the nurse could hear some congestion through the stethoscope.  They cleared out her breathing tube several times and finally got a huge glob of gunk that was stuck in her airway.  After that, her breathing improves instantly!

Have I mentioned how much I adore the nurses, doctors and staff at Randall?
They will forever be our angels.

1 comment:

plpamlee@gmail.com said...

that was so heartwarming to read....what a wonderful group of support you have all around you..there is a lot of light at the end of your tunnel...I feel so blessed to follow your story...Little Zoe is a beauty and I am in a way glad she is so little and won't be able to remember this but she is coming through with flying colors.. blessings to all of you
Love Pam