The Addie FAQ

I haven’t blogged in so long, and I’m really trying to be better about it. Addie has been in the hospital almost 6 months (it’ll be 6 months next week), and I spend my days morning til night at the hospital. With terrible WIFI, it’s been hard to have motivation to write, because it takes over an hour to load one page on my laptop. Needless to say, any time I try to blog, I want to throw my computer out the window. It’s hard enough to write an Instagram or Facebook post, because I get interrupted so much from tending to Addie. They usually take an hour to write just a few sentences!

Over the past few months, I’ve gotten many of the same questions over and over again. I thought it’d be fun to write an FAQ on Addie with your questions! So here goes:

 

A photo posted by Stephanie W. (@mathewsbambina) on

 

 

What “condition” does Addie have?

To put Addie in a box and say she has a “condition” doesn’t do her justice. Addie has multiple issues that contribute to the health problems she is currently facing. For starters, when we first had our 20 week ultrasound and found out that Addie had a Sacrococcygeal Teratoma. Not only that, but we were told Addie had a translocation of chromosomes 1 and 5 (one from each pair swapped with each other). Her translocation is imbalanced and chromosome 1 has a duplication (so a little extra of some) and chromosome 5 has a deletion (part of it is missing). Because this is not common, there’s literally no “condition” or name for the chromosomal abnormalities Addie has. In addition, Addie also has hydrocephalus, which we are currently treating with her most recent surgery.

 

How many surgeries has Addie had and why?

Addie has currently had 6 surgeries. Surgery 1- PDA ligation for a murmur due to a hole in her heart. She now has an incision scar on her left shoulder blade. Surgery 2- Sacrococcygeal Teratoma removal surgery. She has an upside down V incision on her bottom now to give her cute little butt cheeks. Surgery 3- G-tube surgery on Oct 24, 2014 to assist with feeding prior to her trach surgery because majority of pediatric trach patients don’t eat by mouth. Surgery 4- Tracheotomy surgery on Nov 6, 2014 to be able to extubate her and allow her to breathe without a breathing tube. Surgery 5- Bilateral Craniotomy Feb 2, 2015 in order to relieve the fluid from her hydrocephalus as well as a brain bleed. Surgery 6- Opening up the right side of the craniotomy incision on Feb 5, 2015 in order to put a different drain in.

Addie has also had many procedures like being intubated/extubated several times, MRIs, CT scans, bronchoscopies, laryngeoscopies, switching of g-tube to g-button, echocardiograms, and more for various reasons.

 

Why do you call Addie the #PinkNinja and how do I get a shirt?

One day, I was talking to my awesome blog friends about Addie and someone mentioned wanting to make a shirt with proceeds going to Addison for her medical bills. Different ideas were thrown around and someone mentioned that Addie was a fighter like a ninja. She also is almost always in pink. So, the #pinkninja tee was born. We love using our #PinkNinja tees as rally shirts when we need extra support and prayers for surgery days, rough days, or just when you want to show how much you love our little girl. You can get your tee at www.pinkninjas.spreadshirt.com! When you wear your tee, make sure you use the hashtag #Pinkninja and #pinkninjasunite so everyone else can enjoy seeing you support Addie! 

Don’t want a #PinkNinja tee but want to support our family? You can go to our Go Fund Me page for Addison and donate there. All proceeds from the tee and GFM go to our family to help pay for our hospital and gas bills. 

 

When will Addie come home? 

This is a tough one for us. We’ve been told several times over the many months that Addie would be coming home. Unfortunately, only God knows when Addie will get to come home to us. Her bilateral craniotomy surgery is hopefully her last, depending on how well things work out when the drain comes out. We are praying that she comes home soon, but only the Lord knows when the perfect day for her to come home will be. Trust me, if I knew for SURE when she would come home (with certainty), I would be announcing it off the rooftops. Mathew and I always jokingly comment on each other’s Addie pictures, “Your daughter is so beautiful! When is she coming home?” because it’s probably our number 2 question we get asked. We can’t help but laugh because sweet Addie has plans of her own! She’s a character!

 

I want to send Addie something. How do I mail it?

We are so appreciative of those who love mailing Addie little gifts while she is in the NICU. You can email me at [email protected] and I’ll be happy to give you information as to where you can mail your gift to her.

We are so thankful for all your prayers, support, and many gifts. We are so humbled by all of it and can’t thank you all enough. It’s very difficult to write thank you cards during this season of our lives, but please know we are ever-so-grateful for everything. We hope you’ll continue to pray for our family and think of us during your day-to-day schedules. Please follow me on Instagram and/or Facebook to get day by day updates. I use #VMWaddisonolivia for anything Addie related, so check it out and read away!

Disclosure: This post may contain affiliate links and/or product(s) sent from companies or their PR team for editorial consideration. For more information, please view my disclosure policy.


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Comments

  1. This post warmed my heart, I love reading about your sweet girl
    Terri recently posted…50 ways to spice up your marriage without 50 shades of GreyMy Profile

  2. You, Mathew and Addie are always in my heart, Stephanie!

  3. Thank you for sharing about your precious baby girl. I need to share a little story with you…when my twins were babies, I was in a MOMS Club and I met this wonderful mom with this baby boy the same age as my two, who had special needs. He was both with trisomy 4p inverted duplication. She said the doctors said that he would never walk or talk and would suffer from seizures and be mentally retarded (yes, they used THAT word! Can you believe it?). Needless to say, he’s this amazing little boy who is in 5th grade in a inclusive classroom. Sure, he has special needs, but he walks and he talks and signs! He still has his G Tube, but he also is able to eat quite a bit of foods.
    Never quit being her advocate. You’re doing an amazing job so far. She’s going to be an amazing little girl!!

    P.S. My friend had us do a service project for a charity called Noah’s Never-Ending Rainbow ( http://noahsneverendingrainbow.org ) . Their website has tons of resources for parents of children with chromosome disorders.
    Karri recently posted…Monday musingsMy Profile

  4. I just bought my #PinkNinja shirt. Can’t wait to get it. I love reading about Addie. I’m praying for y’all! <3

  5. I always love to see a daily dose of Addie on your Facebook page 🙂 She truly is a special girl!
    Kim @ HappyPrettyBlog recently posted…January Project Life PagesMy Profile

  6. Stacy Weber says:

    I pray for your little girl every nite when God and I talk. I firmly believe in the power of prayer and my God is an awesome God!

  7. Thank you for the FAQ! Addie is beautiful. We understand the craziness going on around you and with all that you keep a beautiful smile on you face. Stay strong momma your doing great! Heylittlefighter.com

  8. I’ve been seeing your posts on Instagram and that prompted me to come over here and read Addie’s story. Hope to hear the news real soon that she’s coming home! The whole O2O team is rooting for her!

  9. Has Addie been tested for Cri Du Chat? You say she is missing part of her chromosome 5. Cri Du Chat is a syndrome cause by a deletion of chromosome 5 and can explain many of her health problems.