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

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!!!