Another Medical Milestone…Nia’s Open Heart Surgery is Near…

Nia’s Open Heart Surgery is less than five days away… We are incredible grateful to be at this milestone especially with such a uncertain beginning. As we approach this big day pray for Nia’s healing, our strength and endurance through another part of this journey!

Next week Nia will have Open Heart Surgery. Her heart will stop and she will be on a bypass machine while her cardiothoracic (heart) surgeon prepares her broken heart! It’s really painful to think about what our baby will have to endure- she has to go through this journey so she can get better- #MyGod!

I can’t fathom what I will feel like on April 16, 2019 as Nia’s life will be placed in the hands of her medical with our God’s supervision. Spiritually we are at peace but naturally as parents I am overwhelmed with the thought of Nia’s chest being cut open and having to be “zipped” back together.

 

Stockpiling BreastMilk- Medical War is Happening

I am weaning exclusively pumping finally! I am down to 3 pumping sessions and plan by next week to be down to 2. Still I’ve been stockpiling liquid gold as if we are going to Medical War 😂😂😂 Antoine has been helping to make sure the milk goes from fridge to freezer! We pray my sacrifice to pump this long and provide treasure of goodness gold helps Nia’s healing! 🙏🏾🙏🏾

Surgery is Necessary

We know that this surgery is a part of Nia’s Journey, but I surely do wish it was a better way. We know that there is victory in the name of Jesus for Nia. We know she is covered by His blood!

Cardiac ICU Tour

We took a tour last week of the Cardiac ICU while Nia was duPont for her Carherization Lab. The tour provided detail information on what to expect when we see our sweet girl post op! Some of the information was rather shocking- paralytic medicine, ventilator, and a chest tub to drain fluid- just seemed to be too much, but necessary for healing…

Parents/Caregivers of Heart Warriors

To parents of Heart Warriors I commend you for your strength and endurance to help fight with your babies to bring them through to other side of life after heart surgery.

We are truly looking forward to getting out of the germ “bubble” and for Nia to be a normal 18 month old kid that just so happens to be a little more petite than most her age and not quite a tooth yet- but that hasn’t slowed her down one bit! She is beautiful and fierce! She loves to giggle and tries to walk- but her broken heart causes her to take mini breaks only for her to speed up again! She doesn’t appear tired but we know at times she is! This is what I call supernatural abilities! Our girl is full of them! Her beautiful and infectious smile wipes away any sadness that we feel at times because all we’ve endured to get her to this day… We will continue to dance in the rain! ❤️❤️❤️

Prayer Requests

We request the following of all prayer warriors:

• Pray Nia continues to remain healthy and free of sickness pre-surgery

• Pray she has an uneventful surgery

• Pray that God gives the expert team the wisdom they need to perform their best on Nia

• Pray she is extubated quickly as possible post-surgery

• Pray she has a strong and speedy recovery

• Pray for continued amazing medical staff to care for our precious miracle baby

• Pray for minimal pain and that God will give her supernatural comfort

• Pray Nia has no setbacks before or after surgery

•  Pray for our strength as Nia’s parents and that God gives us endurance and perseverance.

• Most of all, pray for continued peace over us as we embark on this new part of Nia’s journey.

• Pray for traveling mercy as we travel to and from duPont

Many have asked how can I/we help? Please don’t feel obligated but if you wish, see link below!

https://mealtrain.com/q8vo45

Don’t forget to wear your T-shirts on April 16th!

His Grace is Sufficient. ~2 Corinthians 12:9

Thanks for continuing to follow Nia’s Journey! Your encouraging words, love, and support has meant so much!

Blessings,

ELS

Paying It Forward- ‘Tis the Season

In the midst of Nia’s all day routine medical appointments on Thursday, 20 December 2018, we managed to pull off paying it forward to current NICU (North and South) families at Nemours A.I. duPont Children’s Hospital.

Nia in good spirits at her last appointment before the Elf Squad made our special delivery ❤️❤️❤️

Thanks to tremendous monetary contributions from close family and friends we were able to spread a little love and prayerfully hope and words of encouragement to mothers and fathers by providing a hot catered meal from our favorite local place during our NICU stay, El Diablo and a little token of love that included a journal, Tag for Tots, and a gift card to Einstein Bagels which is located inside the hospital and not actually hospital food 🙌🏾🙌🏾🙌🏾.

We know this NICU journey is hard and lonely, and hospital food is even more depressing. Food is comfort and we wanted to make sure all the new moms and dads could enjoy a different food flair while now having a way to memorialize their thoughts, feeling or any pertinent information for the day (using their journal).

Our love for duPont is indescribable. Walking through the doors of the hospital we are always met with love, care, and compassion like I’ve never seen before. There is a vested interest and a sense of empowerment giving to us as parents to be in control of our child’s care.

Although we had appointments before dawn, all were timely and all doctors were cognizant we had a long day. We were so blessed to end our day of medical appointments by showering our former temporary home with a little love from us.

To all NICU parents currently enduring this journey- know there is hope… Our baby Nia was counted out even before she ever graced this earth on September 27, 2017 but a year plus later we are home and she is truly defying the odds! We pray that your NICU Warrior will do the same and graduate too!

Even if your journey doesn’t turn out the way you expected, know that you are awesome and amazing for fighting and advocating to no end for your biggest blessing yet- your NICU Warrior. Your unique journey is encouraging others. Your strength is not lost and you are not forgotten!

Peace and Blessings!

Merry Christmas!

~The Elf Squad aka The Shoemates~ Antoine, Nia, and Erica 🤗

In front of duPont Children’s Christmas Tree

NICU North ❤️❤️

NICU South (Original)- Nia’s former NICU home 😍❤️❤️
Happies for NICU Families

Up Close of Happy 🎁☺️