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 whatโ€™s the point of pumping milk if I wonโ€™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 ๐Ÿ˜‚๐Ÿ˜‚๐Ÿคฃ๐Ÿคท๐Ÿฝโ€โ™€๏ธ

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 Niaโ€™s coding episodes ๐Ÿ˜ข

After Nia’s transfer to duPont Childrenโ€™s she had surgery for her G-tube/Nissen fundoplication.ย  A Nissenย  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 itโ€™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 โ€œventingโ€ 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- Antoineโ€™s engineering/mathematician light switch came on…. ๐Ÿ™Œ๐Ÿพ๐Ÿ™Œ๐Ÿพ๐Ÿ™Œ๐Ÿพ๐Ÿ™Œ๐Ÿพ. Game changer… Nia would get her full feed but broken into halves for about a 10 minute break in for โ€œventingโ€ to let gas/air out via the g-tube. It wasnโ€™t her body couldnโ€™t handle the full feed but she is always super gassy.

Venting the tubeโ€ – See air/gas bubbles in milk

Niaโ€™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 hadnโ€™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????!!!! ๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿคท๐Ÿฝโ€โ™€๏ธ๐Ÿค”๐Ÿ˜Š

She does everything on her terms- doesnโ€™t want our help! ๐Ÿ˜ฌ๐Ÿ˜ฌ๐Ÿ˜ฌ

Our hard work and her retching-gagging episodes have paid off as our sweet baby is now very interested in whatโ€™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 Earthโ€™s Best Chicken Pot Pie Pouch- thatโ€™s her favorite! This mama had a moment…

I know this doesnโ€™t seem like much to most but itโ€™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! ๐Ÿ˜ญ๐Ÿ˜ญ๐Ÿ˜ญ๐Ÿ™Œ๐Ÿพ๐Ÿ™Œ๐Ÿพ๐Ÿ™Œ๐Ÿพ

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!!!

Author: Nia's Journey

Mother of a Miracle Warrior Baby Girl! Her name is Nia Alexandria! Nia's Journey has given me a completely different perspective on life! I pray her journey blesses others along the way- follow me @nias_journey (Instagram) and www.niasjourney.com

9 thoughts on “Week of Thankfulness…Thankful for the Ability to Eat By Mouth”

  1. Every milestone is to be celebrated, no matter how small! We praise you in advance Oh God๐Ÿ™Œ๐Ÿฝ๐Ÿ™Œ๐Ÿฝ! Cassidy struggles with chewing so weโ€™ve been stuck at stage 2 foods to prevent gagging nor does she hold her bottle or spoon…YET! But God! Thank you for sharing her journey with us! I get it all!!

    Liked by 1 person

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