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.

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

 

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.

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

 

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. 

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

 

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 thevintagemodernwife@gmail.com 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!

Essential Oil Blog Hop- Ginger Essential Oil

Disclaimer:

*The information in this post has not been evaluated or approved by the FDA. Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY.*

*In addition, I received a sample oil in exchange for my participation in this blog hop and for the purpose of a testimonial. All opinions are my own. By being a part of this hop, I have the chance to receive a referral bonus.

Want to learn all about Essential Oils? This Essential Oil Blog Hop is the ULTIMATE resource on EO's with testimonials, uses, benefits, and recipes!

Welcome to the Essential Oil Blog Hop!

Each participating blog has a different post on a number of topics, from how to use essential oils in general to actual uses and testimonials for the oils themselves. We hope that you will have some fun and learn a bit as well! If you are new to essential oils, you may want to start with some of these introductory posts:

I’ll be honest… I’m a newbie when it comes to essential oils and really started learning about them whenever I agreed to participate in this blog hop. With Addie being in the hospital, I’m always trying homeopathic remedies to assist with her care. One of Addison’s nurses turned me towards coconut oil months ago for her cradle cap, and ever since then I’ve gotten a little more “crunchy.” I always joked with her nurse, “You’re making me crunchy! Next thing you know, I’ll be ordering essential oils!” And months went by of using just pure coconut oil for post-bath time, and I kept wondering about the possibilities of how I could incorporate more homeopathic remedies for Addison.

Want to learn all about Essential Oils? This Essential Oil Blog Hop is the ULTIMATE resource on EO's with testimonials, uses, benefits, and recipes! Check out Ginger, and then visit all the other blogs in the hop to learn about your favorite EO's!

My sweet friend Dory sent me some goodies to try out with various Young Living Essential Oils like a body scrub, tummy rub for Addie, night time rub for both Addie and I, a rollerball with Thieves, and a container of the Young Living Ginger Esssential Oil. My package came no strings attached, and it wasn’t until I tried the oils on their own, scrubs, and rubs, that I decided to be a part of this blog hop. Being a skeptic, I originally tried my ginger on Mathew (because let’s face it, guys are never shy about their stomach issues), by rubbing a few drops on his feet after our big Valentine’s Day meal. He felt better so quickly and we were both pretty surprised! I’m not sure why I was surprised, because when I was pregnant, I loved having ginger in my foods because it would help with my upset stomach from morning sickness. Needless to say, once it helped Mathew feel better, and I remembered how greatly I benefited from ginger during my pregnancy, I realized I needed to keep ginger in my arsenal around the house.

I’ve also been that mom in the NICU now that says “You know we need to get some essential oils up in here!” and have been asking Addie’s nurses and doctors what they think about them. I think it’s great that they allow me to do what I feel is best for Addie and use my homeopathic remedies on her. Now I tell people I’m pseudo-crunchy and it’s only getting worse. I can’t help that I want to do the right thing for my family!

Ginger Information

  • Warm, spicy fragrance
  • Energizing
  • Supports digestive system
  • Soothes, comforts, and balances stomach discomfort
  • May be used to enhance the flavor of foods

To Use

  • Add 1 drop into food for taste
  • For dietary supplement, dilute one drop in 4 oz liquid.
  • Diffuse in a diffuser specially made for essential-oils to help dispel nausea or motion sickness. Add a citrus essential oil for a spicy fall scent.
  • Open the cap and smell to help settle stomach (or add to food or drink)

Please spread the love and visit some of the other posts in this Blog Hop!

We are going to be giving away a roller bottle of Stress Away to one lucky reader! You have many ways to enter!

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If you fall in love with essential oils and are interested in purchasing the Premium Starter Kit (more on that here), make sure to mention my blog as a referral! Better yet, you can sign up by using my direct link and be a part of my team!

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I’m hoping to make a post soon with a fun scrub using my essential oils. It’s getting so interesting trying to use them and figure out which are my favorites! I’ll be updating you all on Instagram with my favorites. Make sure you are following me!

When God Tells You No (or is it “Try Harder?”)

Last week was hard. If you follow me on Instagram, you’ll have known that Addison’s second extubation didn’t work. I thankfully didn’t stay in her bed space when they tried again, and had my parents with me for moral support. Mathew had to work, and I definitely knew I couldn’t do it alone. The doctor came out and I KNEW her extubation had failed. It hadn’t hit me right away and I stayed pretty calm. We’d talked to the doctors prior to extubation and the words “tracheotomy” and “trach” were discussed as one option if the extubation failed. It truly hadn’t hit me though, until I’d come back to Addie’s bedside and a trach nurse stopped by to tell me about trachs. That’s when I lost it and realized God hadn’t answered my prayer right away like I thought. What do you do when God tells you no? Or is it..”try harder?”


A tracheostomy is a SERIOUS and HUGE deal. My older sister has two amazing daughters (the best nieces an aunt could ask for), and one of them had a tracheotomy as a baby. Trachs are a lot. They require possible ventilators, nurses 24/7 in your home, medical supplies, and more. Not only that, but there is a lot of learning and care involved, it can cause high stress in a household, and Addie takes longer to heal than most. I prayed a lot before Addison’s 2nd extubation. I prayed endlessly from the day her first extubation failed until the doctor came back from her 2nd extubation. When the doctor told me it didn’t go well a second time, I wondered why God told me no to my prayer. Sure, I’d always said God wasn’t a magic genie who granted wishes, but still, I’d hoped with all my heart that she would be able to breathe with the cannula. It was a punch to the stomach knowing that my prayer seemingly hadn’t been heard. But then I kept thinking…maybe God is telling me to try harder.


Is a tracheotomy the only option? Should we get a second opinion? Would going to Texas Children’s in Houston be what we needed to do?

I made the decision to ask the doctors to come together for a big round table meeting. Our meeting is tomorrow at 7 am. We are going to sit down with all the doctors, Addie’s nurse, the trach nurse, my in-laws (my MIL is a Speech Pathologist), the Social Worker, and the Chaplain and hash out every question we have about Addison’s care. Mathew and I want to make sure we’ve done everything in our power to get the best care and options for Addison, and this is how we’re going to do it. It’s not going to be fun, it’s not going to be easy, but I feel it’s where God is leading us.


I can’t shake the feeling that God told me “no” to her extubation so we could “try harder” for better options and truly advocate for our daughter. I’m not sure what our meeting on Tuesday will hold, but I’m hoping that we can work something out besides a tracheotomy. Being away from home will bring it’s own set of challenges including Mathew and Addie not seeing each other except on weekends, being away from Pearl, among other things. It would be insanely hard, but only temporary and would bring us closer to bringing Addison home to live a “normal” life.


Please pray for us today and tomorrow that Mathew and I will make the right decision for Addison’s next step in her care. I so desperately do not want her to have a tracheotomy (though I will if that is the only option). Please pray that other options will be available and that we will be able to do what’s best for her so that she may thrive and grow at home sooner rather than later.

When one door closes, another opens. God…I’m listening. I will try harder. Help guide the way.