Coronavirus Is a Big Deal but Don’t forget about Flu and RSV…Why it Matters for Babies Born With Congenital Heart Defects ❤️❤️❤️❤️❤️

This is the last day of February, and what better way to end Heart Health Month and a month where the spotlight is given the to Congential Heart Defects awareness; February 7th was National Wear Red Day, and marked the beginning of #CHDAwarenessWeek. CHDs are near and dear to me as my miracle baby girl, Nia was born with a hole in her heart and leaky valve. This time of the year is where cabin fever is heightened because we limit Nia’s exposure to people outside our home! PTSD is real for all the #NICUParents #CardiacWarriorParents.

The average mama probably goes about all four seasons not even seriously anticipating when exactly does fall/winter start and when does it end?? For us mamas/parents that have NICU, Cardiac, Pulmonary or Immunosuppressed Warrior Babies/Toddlers, this is always on our mind… why because we have been traumatized by the extensive hospital stays from the time our our babies were born. Thinking of a hospital brings traumatic memories that are truly unfathomable.

Think Again Head Cold at Work or Baby at Daycare…

That little stuffy nose or head cold that a colleague brings to work, that mama’s sixth senses just became a little more heightened by your presence? She is lysoling not only for her sake but for her little miracle at home or daycare. Also I know it’s hard juggling the professional mom life, but please don’t suppress tour baby’s fever with meds and send them on to daycare, you may have possibly compromised another’s mama’s little miracle – who has seen more than his/her fair share of the pediatric ICU or whatever step-down unit…Just a stuffy nose to you could be RSV to her baby!

Unless you have been a regular at the hospital ER then you couldn’t possibly understand why these mamas say please wash and sanitize your hands or better yet just stay away. You wouldn’t understand why she may even ask you to when was the last time you had a cold or something worse – the flu, sinus infection, pneumonia (whatever).. PTSD of the hospital and a rollerocaster health ride with her baby has made her this way…

She is up at night rocking and suctioning her baby while watching also if her baby may suddenly turn blue – yes this is what RSV can do!

No Baby/Toddler is Immune from RSV or Flu

RSV and flu can cause a baby’s lung to collapse – and it doesn’t matter if you brought home a healthy baby – they aren’t immune to these horrible and deadly “colds” for your little miracle.

Winter Season 2019-2020 for Nia

RSV and Flu Seasons came way too early this go round.

Nia tested positive for RSV at the beginning of October, right after I returned from a girls trip to Napa Valley. Receiving the news from Nia’s pediatrician, immediately brought back horrible NICU memories – the day she stopped breathing as an infant… I immediately broke down into tears… again most would say what’s the big deal?!! RSV can cause a little one to go south really fast… there is a high risk of rapid breathing, shortness of breath, and the stuffy nose is on a whole other level which makes it hard to breathe.

I am so grateful for an amazing pediatrician who saw the distress in me and said look “do I look worried?” She knows Nia so well and knows she is a trooper… She said Nia looks great but something changes after hours then emergency room. She understood I knew Nia’s threshold of danger… it was the encouragement I needed to get my head back in the game to care for Nia since Antoine had left for a short trip, typically how life happens right?!! This mama was exhausted but we survived RSV (plus an ear infection) with no hospitalization. Thank God for my emergency breast milk stash I had saved since last May – it definitely came in handy.

Fast Forward to the Holidays…

Nia tested positive for Flu B and again I kept saying Lord please no hospital stay – this mama can’t take it.

We visited Memphis for Christmas. Nia was able to meet a lot of family and friends she’s never met before. However, On our drive back to Northern Virginia, Nia started to run a fever and had a runny nose. I had Tylenol but left Motrin at home because well for once I was trying not to let PTSD get in my way for this special time with family. I kept praying and saying in my head Nia would be fine, I don’t need all the extras. Welp that unfortunately was no the case. We had to pull over at a Wal-Mart in the middle of nowhere Tennessee to get some Motrin so Nia could tru to sleep. Let’s just say this ride home was not enjoyable.

After consulting with Nia’s pulmonologist he said to take her into the pediatrician’s office to be tested immediately since flu B was quickly on the rise. So happy we did.. We brought in the New Year with a Tamiflu Party of things (except for Antoine). He managed to not need it, thankfully. Thankfully I had emergency breastmilk again to give Nia… She bounced back pretty quickly and so blessed and grateful she did.

Mama Caring for Flu Ridden Baby and Self

Tamiflu Party – Antoine’s Birthday and NYE 2019 – on the mend

I know Nia needs to be exposed to other people and germs but with Flu and RSV B wreaking havoc on the nation, including at least 28 deaths in children, I would rather keep her in a bubble. This is not realistic, but I will do my best to protect Nia at all cost. So please don’t be offended when we ask you to wash and sanitize your hands before passing go at our door and I may slap a stranger’s hand that wants to touch Nia – sorry not sorry! This is not my comfort zone but don’t force Mama Bear to come out. There is nothing worse than watching your miracle warrior you fought so hard for to have to struggle to breathe yet once again because of another person’s selfishness insists on being in your presence with just a “little cold.”

Signs and Symptoms of RSV – Respiratory syncytial virus

When to see a doctor: Call your baby’s doctor if you notice any of the following RSV symptoms:

• A high-pitched whistling or wheezing noise when they breathe

• Being unusually upset or inactive

• A cough with yellow, green, or gray mucus

• Trouble breathing or pauses in their breaths

• Refusing to breastfeed or bottle-feed

• Signs of dehydration: lack of tears when crying, little or no urine in their diaper for 6 hours, and cool, dry skin.

If your baby is very tired, breathes rapidly, or has a blue tint to their lips or fingernails, call 911 or go to the ER immediately.

Source: WebMD https://www.webmd.com/lung/rsv-in-babies

Additional Resources:

https://www.cdc.gov/rsv/about/symptoms.html

Signs and Symptoms of the Flu

The flu is an acute, viral, respiratory infection that most people recover from in 3–7 days.

Symptoms of the flu in toddlers are similar to those of adults and may include:

• dry cough

• sore throat

• blocked or runny nose

• fever

• muscle aches

• headaches

• tiredness

When children get the flu, they are also more likely than adults to experience gastrointestinal problems, such as vomiting and diarrhea.

The following are key differences between cold and flu symptoms in toddlers:

• Speed of onset: If symptoms come on very quickly, it is more likely to be the flu.

• Fever and chills: A high fever and chills are more likely to be signs of the flu.

• Muscle aches: Aching muscles are more common in children with the flu.

• Headache: Headaches are more frequently with the flu than with a cold.

• Low energy and appetite: Children are typically more lethargic and less hungry with the flu than a cold.

The following are key differences between cold and flu symptoms in toddlers:

• Speed of onset: If symptoms come on very quickly, it is more likely to be the flu.

• Fever and chills: A high fever and chills are more likely to be signs of the flu.

• Muscle aches: Aching muscles are more common in children with the flu.

• Headache: Headaches are more frequently with the flu than with a cold.

• Low energy and appetite: Children are typically more lethargic and less hungry with the flu than a cold

source: Medical News Today: https://www.medicalnewstoday.com/articles/327110.php#cold-and-flu-differences

Additional Resources: https://www.cdc.gov/flu/symptoms/index.html

Last note: Although the flu vaccinations aren’t 100 percent foolproof – it does help to fight against the flu. The sooner your child is seen by a medical provider with both fRSV and flu the better you can manage the illness especially with Flu. Flu viral medicines are much more effective within the first 48-72 hours of contracting the virus.

Wash Wash Your Hands and Do the Same for your Babies and Toddlers!

This helps to stop the spread of infections such as RSV and Flu.

Blessings,

ELS

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

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! 😂😂😂

Paying It Forward Part II- New Year and Purpose

A 35 day plus government shutdown- working WITHOUT PAY, couldn’t stop our hearts from giving! Thanks to tremendous donations from our family and friends during the holidays and coordination with March of Dimes we were able to bless our 1st NICU Home on Saturday, INOVA Fairfax. We provided NICU families with a hot catered meal from Nando’s Peri Peri- our favorite local place while in the NICU.

A little bit of compassion and empathy can go a long way on this journey! We will never forget, which is why we are compelled to pay it forward! We pray this will be an annual event for us.

We were blessed by other moms, dads, and grandparents sharing their current NICU journeys with some intimate details of the hardship they are enduring… Their tears, hugs, laughter, and even a few smiles humbled us in so many ways- we could truly relate. Some parents had babies only a couple days old, but thankful to have a meal that they didn’t have to pay for or go far to get. All NICU parents want is to be with their babies!

Nia’s journey provided some comfort to the parents… You could see some of the fear, worry, and anxiety in their eyes thinking of their own babies, but our story gave them a little bit of hope and reassurance. When the situation looks dire, God can turn it around in an instant. To know our baby should have been DOA, but she is thriving 16 months later is truly miraculous. We pray that the parents we encountered on Saturday will be able to take their babies home in the next weeks or months.

We are on a mission to transform healthcare for babies, mothers, and fathers enduring long hospital stays or complex medical care through advocacy, knowledge, storytelling, and provider and patient engagement! Paying it forward is just a piece of this.

Peace and Blessings!

Erica

Erica, Antoine, and Nia

Link to Paying it Forward- Part I

https://niasjourney.com/2018/12/25/paying-it-forward-tis-the-season/

One Year NICU Graduation Anniversary Reflection- Nia’s Homecoming Day 01.24.2018

It’s been exactly one year (okay and one day) since Nia graduated from the NICU, Wow! Time surely does fly!

We are so grateful for this milestone. It’s fun seeing life in hindsight… I am still in awe of our miracle, and God’s miraculous works. According to science, Nia really shouldn’t be here and she almost wasn’t going to be… but God!!! Thinking of Nia’s Journey til this day still brings me chills- wow! The even more amazing part is that she is imperfectly perrfect. Through her rare dwarfism we’ve been humbled. Although this journey is not the parenthood assignment we initially wanted, it’s the assignment we needed- God chose us!!!

She is beauty, she is love, she is sweet, she is intelligent- seriously, she is funny (actually really hilarious). Beyond all those things our baby girl is here a year later, post 118- day NICU journey and thriving beyond any clinicians dreams (prognosis).

Nia has touched so many lives including ours. She has transformed us in ways we never imagined. Personally, I am on a journey to spread love, advice, knowledge, and awareness on navigating the healthcare system and complex medical needs. Who knew our journey would put us in a position to bless other families in this last year! Wow!

Nia’s journey has blown our minds. While we’ve had some unexpected setbacks we’ve had some unexpected blessings as well!We couldn’t be more grateful for our sweet angel!

Cheers to 1 Year Post-NICU Life!!! Nia will forever be a true #NICUWarrior

And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose. ~Romans 8:28

Blessings!

ELS

Erica, Antoine, and Nia


1 Year ago January 24, 2018

Picture on the left first day home and pic on right one year (and a day) home!

January 24, 2019 💚💚💚💚

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!

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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!!!