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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It’s Hearth Health Month! 💗❤️💚

Last Friday, February 1st marked the beginning of Heart Health Month and the kick off began with National Wear Red Day to raise awareness on this issue. Heart Health Education and Awareness has always been near and dear to me because I have a family history of heart related conditions/diseases including genetically inclined high cholesterol, congestive heart failure, and heart arrhythmia.

Raising and Caring for a Heart Warrior

This health issue takes on a whole other meaning as I (We) am now raising a Miracle Heart Warrior. Being Nia’s mom has really increased my knowledge and awareness on the impact of congenital heart defects (CHD) to our everyday lives. Finding out Nia had a CHD initially felt like another dagger on our salted wound- especially with ominous news that our baby’s fate was pretty grim.

We held out a little faith and hope that just Maybe she didn’t have a CHD which could possibly increase her slim (to none) survival rate Hearing at 29 weeks gestation, Nia indeed had a CHD was heart-breaking. For me, I thought wow she probably won’t stand a chance. Seeing her local amazing cardiologist for the first time was overwhelming as Nia initially was diagnosed with a atrial septal defect (ASD) and ventricular septal defect (VSD) which meant if (and big If) Nia survived she would need surgery within the first 3-4 months of life. Well God had another plan- as we all know now- her VSD magically/divinely disappeared. It no longer showed on her echocardiogram (images of the heart) at birth! 🙌🏾🙌🏾🙌🏾🙌🏾 To see Nia pink on delivery day was and still is a magical visual moment forever in my heart and mind!

Since Nia has a un-repaired atrial septal defect (ASD)- hole in her heart and a leaky valve we’ve spent our winters hibernating her from others because of the high risk of flu and RSV. I’ve written numerous times how a cold could be deadly for her- and yes it is true until her heart is fixed! We are blessed and thankful she was approved for Synagis again which is a very expensive RSV antibody shot, that will help her body better handle such a deadly virus if she contracted it. Praying though we never have to face this diagnosis… I am continuing to pump liquid gold- breastmilk into her. 🙌🏾😊

To Family and Friends of CHD Warrior Parents…

If you know someone that has a baby with a CHD please understand and respect their wishes If you get an invite to visit but you feel like you are coming down with a cold or getting over a cold to just stay home… Yes it’s that serious! Don’t judge them for all the soap and hand sanitizer they have around their house, handbags, or back pocket. They are being extra cautious because their precious cargo is even more special 😘

If they won’t allow you to pick their baby up or visit be respectful too- as their doctor’s have already scared them enough, and they may have been hospitalized unexpectedly 1 too many times already, If they’ve had an extended NICU or Cardiac ICU stay then they are more than likely traumatized by the clinic setting and the thought of returning unexpectedly. Help them to not have to be Mama or Papa Bear because if you’ve met NICU and/or Heart Warrior Moms and Dads they are built a little different from other awesome moms and dads. 😉❤️

Congenital Heart Defect Facts

Below are some facts on Nia’s condition and CHD:

⁃ Ellis-van Creveld (EVC) babies have a 60-70 % chance of being born with a CHD which ranges from ASD, VSD, HLHS, and leaky valve (not all encompassing)

⁃ Babies with EVC have a restricted rib cage which complicates managing a CHD

⁃ According to research conducted by duPont Children’s Hospital and the Clinic for Special Children in Lancaster, PA, managing babies with EVC and CHD shows that if heart surgery is delayed until approximately 2 years of age there are no mortalities

Additional Facts about babies with CHD

⁃ According to the Center for Disease Control, approximately 40,000 babies are born with a CHD every year

⁃ CHDs are a leading cause of birth defect-associated infant illness and death.

⁃ About 97% of babies born with a non-critical CHD are expected to survive to one year of age. About 95% of babies born with a non-critical CHD are expected to survive to 18 years of age. Thus, the population of people with CHDs is growing.

⁃ About 75% of babies born with a critical CHD are expected to survive to one year of age. About 69% of babies born with critical CHDs are expected to survive to 18 years of age.

Please help me/us raise awareness for Congenital Heart Defects (CHD) in babies!

For more information on raising heart health awareness see links below.

https://www.heart.org

https://www.cdc.gov/ncbddd/heartdefects/links.html

Cheers to February Heart Health Month!

Blessings!

ELS

Erica, Antoine, and Nia

The Best Pic We Could Get as a Family for National Wear Red Day and for Alpha Kappa Alpha Sorority (my sorority) Pink Goes Red! 💗💚💗💚❤️ Nia was all over the place! 😂😂😂