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! 😂😂😂

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!!!