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

Traveling While Exclusively Pumping: Tips from a NICU and Heart Warrior Mama 💚❤️💜

Tips for hardworking Exclusively Pumping Mamas on the go that worked for me for 19 months plus….

Post Written by Popular Demand

As a recent alum of the exclusively pumping mama club, I never imagined I would be that mom to pump any and everywhere but the way NICU life set us up- I had no choice (at least in my mind), as the pump had become my 2nd husband 🤣🤣. I pumped in the car, driving down the highway, in the airport, in a make-shift lounge, the designated lactation rooms, the restroom, at work, family and friends homes, right before a concert (no seriously). Antoine and I had date night to a concert while Nia was in the NICU and we had to time my pumping sessions perfectly in order to enjoy our night out. So pumping session had to happen right before going into the concert! 🤷🏽‍♀️

Traveling by Airplane

When traveling by plane, pumping can be a little interesting. I know some moms have no shame in pumping in the middle of an airport floor/our in the open- hey the milk has to be released but if you want a little more privacy see my tips below.

1. I tried to pump before going to the airport and if I had at least a two hour layover, I did pump while in airport… Now this can be tricky.

2. Prior to traveling, I checked out the airport(s) via the internet for designated mother/lactation rooms. Not all airports do at the moment. However, a recent federal law was passed last year mandating all airports to have at least one designated lactation room and it can’t be a restroom. However, as of Spring 2019 I found myself in airports that still did not have designated lactation rooms.

https://www.usatoday.com/story/life/allthemoms/2018/10/12/nursing-rooms-breastfeeding-moms-now-required-major-airports/1613690002/

The below website is awesome for designated lactation/nursing room locations in U.S. Airports

https://momaboard.com/traveltip/airport-nursing-rooms-united-states/

Must Haves for Pumping While Traveling (air and land):

1. A portable pump- I own two Beleef Pumps (one for home one for work, purchased on Amazon for under a $100 bucks and can really empty your breasts

2. Storage Bottles or Bags- Used to Store Milk … If you have 3 oz bottles for flying, TSA won’t have to test your milk as it falls under the 3-1-1 rule (Note: if you must have your milk tested by TSA Officer ask them to change their gloves prior to handling your milk)

3. Sanitizing Wipes (Wet Ones)- To wipe down area where you will be pumping

4. Water Wipes- To clean your pumping parts after pumping

5. Cooler bag or pack to store milk and pumping parts

6. Ice Packs- preferably refreezable hard plastic packs as they can last about 14 hours

Key Reminders

1. Breast Milk can be refrigerated up to 4 days without freezing

2. I tried to keep my roundtrip via air no longer than 4 days to prevent running the risk of needing to freeze my milk only to have it unthaw before i got home, which can lead to wasted liquid gold- milk.

3. I tried hard to ensure my trip travel times are no more than 10 hours by plane, but sometimes delays happen, and then the spirit of desperation and mama bear will come into play to save the milk- after so much boob exercise/work and sleep deprivation (See #5). If you are traveling with your baby of course you can give him/her the milk. I was unable able to do so due to Nia’s un-repaired heart (at the time). So I did my best to protect my milk.

4. Check to make sure any hotel you are staying has a fridge.

5. If you are in situation where there is an extended layover or unexpected flight delay, I recommend asking a restaurant in the airport for additional ice. People are usually generous when you mention what it’s for. Don’t be ashamed- preserve liquid gold at all costs!

This way of pumping while traveling worked for me. I am sure there may be better ways, but after 19 months and 5 days, May 2,2019 (officially an EP alum now), including surviving a 118 day NICU stay, three unexpected hospital stays, open heart surgery with Nia AND being a professional – working mom, senior manager, I definitely found some great ways to travel and work yet maintain my milk supply. I did whatever I could to preserve my precious liquid gold I worked so hard to make.

I am thankful that my breasts and breast pump finally were able to divorce on good and mutual terms! 😜

Please feel free to share my tips with other hardworking pumping/nursing mamas who travel.

Thanks to @exclusively_pumping for highlighting my exclusively pumping journey!

Exclusive Pumping on Instagram: “Erica (@nias_journey) made this beautiful collage to celebrate 19 months of exclusive pumping, and I love it!⁣ .⁣ She says:⁣ .⁣ After 19…”

Blessings,

Erica

ELS

Pics from my pumping while traveling life including Nia’s not so close to home medical appts…

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! 😂😂😂

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 💚💚💚💚

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!

img_0254

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