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

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 💚💚💚💚