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

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

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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 🎁☺️

Week of Thankfulness- Thankful to Celebrate Thanksgiving Full Circle With Nia at Home! 🙌🏾🍁🍁🍁❤️❤️❤️

I am thankful for the breath of Life and Thanksgiving Outside of the NICU 🙌🏾🙌🏾😍💗💗💗💗🍁

Thanksgiving last year we split our time between attempting to celebrate our blessings at home and then making our way to be with Nia in the NICU.

We are so incredibly thankful for a sweet friend that brought a whole Thanksgiving Dinner to us during our NICU journey last year! Alexis and Jeff W- we love you all!

As I write this post, I am incredibly emotional as this is another milestone for us! We are home this year for Thanksgiving and all together. We woke up this morning with sleeping arrangements a little different from most parents with a toddler. Since our home health Nurse called out last night, Antoine and I had to camp out on Nia’s bedroom floor so she could sleep in her own bed. Our journey doesn’t allow the freedom for Nia to sleep alone without being monitored! Yes we have a camera/monitor in her room! Antoine is an Engineer and gadget guru 🤣🤣🤗❤️ BUT we have to make sure Nia doesn’t flip over and put her entire face in her mattress. So before we went to sleep we had to place her pulse oximeter on. Nia fell asleep before her Triology/CPAP could be put on- so we just winged it and let her be- back to us being dubbed as the #WingitParents because of this journey. We don’t always follow the rules or doctors’ orders every night- and just thankful today we don’t have to since Nia is a little stronger! So no machine last night but we made a pallet on the floor instead to hear her breathe and not solely rely on a machine to tell us if her oxygen saturation or heart rate dropped too low!

Our Thanksgiving Morning 2018! Pallet and Pulse Oximeter- the simple things!

Thanksgiving 2018- we are thankful for our eternal God allowing us the gift of life- birthing and parenthood experience beyond the walls of the NICU. We will never take it for granted! We are thankful for Nia’s medical equipment and devices- Infinity Feed Pump, syringes, g-tube (Mini one profile), g-tube extensions, bolus and gravity feed. Gravity feeds are lifesaver on time when we are exhausted- thank you Antoine for being risky and trusting that Nia can handle it. We are thankful for Lasix, which helps prevent fluid build up around Nia’s heart and lungs with her congenital heart defect. We are thankful to be able to continue to produce breastmilk as an exclusive pumper- 13.5 months postpartum! 💗💗💗

We are thankful for Nia’s triology/CPAP which expedited her discharge from the NICU at duPont Children’s. We are thankful for Nia’s expert medical team including the local DMV team- her pediatrician is a jewel and rockstar; duPont Children’s (NICU and Cardiac Center) and expert cardiologist in Lancaster, PA! We love you all! We are even thankful for INOVA’s NICU team for taking care of Nia for the first two months of life (despite some mishaps and frustrations along the way)! Much love to Dr. B and some of our NICU nurses- now forever friends!

We are thankful for our new family and friends we’ve made in the NICU at INOVA Fairfax and duPont Children’s Hopsital! What an awesome and amazing blessing seeing our babies a year later and watching other amazing Warrior parents in action advocating for their precious gifts too!

My emotions are raw and real and can’t help but think of the families that have lost loved ones and precious babies that may have never experienced life outside of the hospital! We love you all and truly thinking of you today! Our hearts ache for you- because we understand all too well the fragility of life! One minute things can be fine and the next minute things go south- we’ve been there- Nia coded twice right after Thanksgiving last year! Please know that your are loved and not alone! We see you and you can reach out anytime- morning, night, overnight!

All I can say is God what a difference a year makes! We couldn’t have made it without your divine intervention- God’s grace and mercy brought us through and continues to do so- even through frustration, pain and chaos! Death was for certain for our sweet Nia- #ButGod #MadeAWay

It’s not about all the food we can eat today but about the unwavering love God has shown us and the insurmountable strength He has given us along this journey! We are thankful for every single moment we get to be Nia’s parents here on this Earth!

Happy Thanksgiving! Be Thankful for the small things! #NiasJourney #ButGod

I will give thanks to the LORD with my whole heart; I will recount all of your wonderful deeds. ~Psalm 9:1

Pics from Thanksgiving 2017

Thanksgiving Morning 2018- Beautiful Nia asleep in her own bed #FearfullyandWonderfullyMade

This post is dedicated to all NICU, Cardiac ICU, and parents that have lost their sweet babies too soon! Today is not easy as you see posts of new gifts of life at home or out and about, and you are sitting in the hospital by your baby’s side instead OR having to relive the would’ve, could’ve of the life you yearned for your heavenly angel babies to be! Love you all! Sending hugs and love your way! 😘😍😍😍❤️❤️❤️

Blessings,

Erica, Antoine, and Nia

Week of Thankfulness…Thankful for the Ability to Eat By Mouth

Nia has been tube fed since birth, because initially she experienced tachypnea (fast breathing), which can be typical of Ellis-van Creveld Syndrome (EVC) due to the narrowing of the rib cage. It’s been a difficult road as I continue to exclusively pump liquid gold for her! We truly believed Nia would take a bottle within the first 3 months of life- but that never came…God had other plans! At times I felt like what’s the point of pumping milk if I won’t get the nursing /bonding experience that I had yearned for… #BUTGOD…I am so thankful he instilled in me Type A characteristics because as I said before- pumping is the one thing on this journey I can control- I continue to compete with myself. As a result, Nia continues to bounce back from any sickness she encounters.

Of course any type of sickness for her can be deadly because of her congenital heart defect and narrow rib cage- #BUTGOD… She is truly a trooper!

My breast-milk is fortified to increase Nia’s caloric intake, with approximately 10ml of Enfamil Nutramigen concentrate formula for every 100 ml- to 22 calories an ounce. Breast-milk is only approximately 20 calories an ounce. At times we feel like dietitians, physicians, pharmacists, and any other medical specialists you want to throw in 😂😂🤣🤷🏽‍♀️

Back to the point about being thankful to eat food by mouth…

As a NICU baby, Nia had a Naso-gastric (NG) tube through her mouth and then nose and then back to her mouth (see pics below) and had to be changed weekly with a required x-ray to ensure tube was inserted properly in her stomach. This pomp and circumstance lasted for the first two months of her life.

NG tube in Nia’s mouth

NG Tube in nose- thank you to her amazing Neonatologist, Dr. B at INOVA Fairfax! No one else had been successful with inserting this tube in Nia’s nose

Chubby Nia- NG Tube back to Mouth after Nia’s coding episodes 😢

After Nia’s transfer to duPont Children’s she had surgery for her G-tube/Nissen fundoplication.  A Nissen  procedure is when a small amount of the stomach is wrapped around the bottom of the esophagus. Again I went through some pumping resentment because of the surgery, but kept producing milk for Nia in spite of these feelings. This G-Tube surgery had many pros, but seemed like more cons in the aftermath. Nia no longer needed to have a tube changed weekly, and her meds could be administered via the tube, and we didn’t have to worry about when she gets sick how to give her calories and hydration… BUT there were new issues- Retching (which we were warned about). Since Nia has a Nissen it’s almost impossible for her to vomit if needed to prevent aspiration into her lungs- which could be deadly for her. However, to watch Nia have these episodes were terrifying and heart wrenching. Just imagine gagging over and over and nothing can come up- that’s retching…for mostly every feed! We learned some tricks for relief called “venting” the tube and the Farrell bag, but neither were always that helpful.

Nia a few hours post G-Tube and Nissen surgery

Needless to say after about 6 months of this- Antoine’s engineering/mathematician light switch came on…. 🙌🏾🙌🏾🙌🏾🙌🏾. Game changer… Nia would get her full feed but broken into halves for about a 10 minute break in for “venting” to let gas/air out via the g-tube. It wasn’t her body couldn’t handle the full feed but she is always super gassy.

Venting the tube” – See air/gas bubbles in milk

Nia’s at-home feeding pump- Infinity Orange designed specifically for infusion of breastmilk

We have continued to worked with Nia alongside feeding, physical, and occupational therapists almost daily with taking a little food by mouth since she is no longer tachypnea. She initially gagged a lot because her gag reflex hadn’t been pushed further to the back of her mouth due to the lack of traditional bottle feeding. However, we gave Nia toys and she started exploring with her mouth. We continued to work on various textures and then the introduction of a spoon.

At around 9 months, Nia saw me drink water from a water bottle and wanted to try! Guess what!!! She was able to swallow water immediately without me ever practicing with her! Then on our first mommy/daughter brunch date with a sweet NICU family, Nia watched me drink out of a straw and decided she could do that too- with no previous practice!!!! Nia is a baby genius- seriously she is sharp! I think it’s the breastmilk, right????!!!! 😍😍😍🤷🏽‍♀️🤔😊

She does everything on her terms- doesn’t want our help! 😬😬😬

Our hard work and her retching-gagging episodes have paid off as our sweet baby is now very interested in what’s on our plates to try by mouth!!!

The Kicker- Praise Break- Moment of Triumph

About three weeks ago Nia ate 75 percent of her Earth’s Best Chicken Pot Pie Pouch- that’s her favorite! This mama had a moment…

I know this doesn’t seem like much to most but it’s everything for us! Every single milestone and breath from Nia- we literally take it all in! So you know what that means- the watershed started as I cleaned all her messiness! 😭😭😭🙌🏾🙌🏾🙌🏾

Thankful is an understatement! Still a work in progress on this feeding journey, but boy has she come so far and can work a spoon so well!

We still have five bolus feeds a day via the pump- which is work to clean and rinse tubes and feeding bags, but we will celebrate every single milestone!

Blessings!

Be Thankful for the small things!

I will bless the Lord at all times. His praise shall continually be in my mouth. ~Psalm 34:1

Faces of Nia enjoying her Chicken Pot Pie!!!