Newborn Baby Care Cystic Fibrosis: Quick Time-Saving Tips

Congratulations on your bundle of joy! Caring for a newborn baby is a joyous and emotional experience for every parent. However, raising an infant with cystic fibrosis presents a unique set of challenges and emotions. 

Each birthday remains a cause for celebration, yet it can feel like time stands still, especially when you’re unsure of what lies ahead. 

The vast amount of information available, along with many unanswered questions, can be overwhelming.

In this post, you’ll discover essential tools and strategies to save time and reduce heartache. 

Let’s explore the world of cystic fibrosis care for babies and understand the reasons behind your child’s condition.

It’s also important to remember that you are not alone on this journey.

Your family, friends, and community are ready and willing to support you. 

I have also found numerous Facebook communities that can help make this process easier to navigate and accept.  

Helpful Tips That Help!

In addition to all the support I received from the communities, I also noticed several tips and tricks that were extremely helpful for parenting a newborn baby. 

I am excited to share quick, valuable information to help you with your daily routine. 

It’s fascinating how a routine can become so natural that you may not notice the difference until you are around other families who don’t have a child with cystic fibrosis (CF).

I always found it interesting how many people wanted to learn more about Anthony’s condition. 

Over time, managing it became normal for us, and we operated on autopilot. It’s a routine and a part of life.

I am grateful for this blog, as it allows me to share helpful information with anyone seeking support. 

Let’s come together to discuss the challenges and solutions that arise when you have a newborn baby with CF.

Starting with the first section, let’s address your everyday concerns and questions about cystic fibrosis.

Things such as feeding challenges, weight issues, hospitalizations, solutions, and more!

Feeding Challenges Encountered With a CF Newborn Baby

My baby seems to have trouble gaining weight. Is this common with CF?

• The answer is yes, it is familiar with CF. Weight gain was a common issue that I had with Anthony when he was a newborn. The reason this happens is pancreatic insufficiency. 
• The pancreas doesn’t produce enough digestive enzymes, especially those needed to break down fats, leading to poor nutrient absorption. 
• Therefore, a nasogastric tube was placed in Anthony’s nostril.
• However, 2-month-old Anthony showed everyone on the floor how strong he is. He pulled it out twice, resulting in them opting for a Mickey button instead for his tummy when he was four months old. Talk about persistence!

Solutions!

• Your newborn baby will require a high-calorie intake and may need supplementation, such as formula or breast milk fortifiers.
• Working closely with a CF-specialized dietitian will meet your baby’s needs. Frequent and smaller feedings are a great strategy because they help lessen gas pains.

How do I know if my newborn baby is getting enough enzymes?

• Studying your newborn baby’s stools is a great way to know if your newborn baby is getting enough enzymes. You will notice the signs of malabsorption, including oily stools and poor weight gain.
• It is crucial to administer pancreatic enzymes with every feeding. Applesauce will become your new bff!
• The different methods of enzyme administration for newborns include capsule contents mixed with a small amount of acidic food or liquid.

Hospitalizations/Overnight Stays

• Ensure that you get plenty of rest before your newborn baby’s hospitalization. 
• Have family members offer a helping hand if you have other children at home.
• Create a list to ensure you pack your newborn baby’s essentials—soft blankets, a t-shirt that smells like you, and anything from home.

Respiratory Support

What are the early signs of a chest infection I should watch out for?

• Key symptoms include increased coughing, changes in mucus color and consistency, rapid breathing, fever, and decreased activity.
• It is vital to have an early intervention and promptly contact their CF care team. I am grateful we had this for my son when he was born.
• Thankfully, not all babies with CF will cough up phlegm. Interestingly enough Anthony pooped it out which was a blessing!

How can I help keep my newborn’s airways clear?

• It is vital to follow chest physiotherapy (CPT) or airway clearance techniques (ACTs) as recommended by your care team. 
• Various saline nebulizers are used depending on the treatment your newborn needs. My son takes Pulmozyne, Sodium Chloride, and albuterol as needed. When he was younger, he would take Tobramycin every other month to combat the MRSA in his lungs.

Lastly, nothing is more important than a clean and healthy smoke-free environment. Secondhand smoke is more dangerous than firsthand smoke.

Bowel Issues

My baby seems constipated. Is this related to CF?

• Meconium Ileus is a possibility at birth, and constipation can be an ongoing issue. 
• This is why monitoring bowel movements and reporting any concerns to your baby’s pediatrician or CF team is essential.
• There are potential interventions, such as stool softeners, which can be prescribed by a healthcare professional. 

Skin and Hydration

My baby’s skin seems salty. Is this something to worry about?

• Not at all! Salty sweat is a hallmark of cystic fibrosis (CF) and a key diagnostic indicator of the disease. The first time I noticed this was when I kissed our newborn babies’ tiny forehead. Talk about salt life!
• Adequate hydration is vital, especially in warm weather or during illness.
• There is also a potential for electrolyte imbalances, and the guidance of their CF team.

Time-Saving Baby Products That Made a Difference

Feeding & Nutrition

1. Hands-free bottle holders: For multitasking during feeds.
2. Digital kitchen scale with high precision: For accurately measuring formula or breast milk fortifiers.
3. Small, airtight containers: For pre-portioning enzyme beads, with clear labeling and storage instructions.
4. Easy-to-clean high chair or feeding pillow: For comfortable and efficient feeding sessions.
5. Serving Tray: This tray helps prepare for daily medical routines. You can place it on a rolling cart and stroll it around your home!

Respiratory Care

1. Portable nebulizer: For easier treatments on the go, if applicable and prescribed.
2. Comfortable and secure vest or other ACT devices (if already introduced and age-appropriate).
3. Humidifier: To help keep your airways moist, follow the cleaning instructions carefully.
4. Baby monitor with respiratory tracking features (if available and desired).

Hygiene & Comfort

1. Wipe warmer: For more comfortable diaper changes, especially if skin sensitivity is a concern.
2. Diaper cream applicator: To minimize mess and ensure even application.
3. Soft and breathable clothing: To avoid skin irritation.
4. Infrared thermometer: For quick and easy temperature checks.

Organization & Tracking

1. Whiteboard or app for tracking feedings, medications, and bowel movements.
2. Small, labeled bins or organizers: For keeping medications and supplies readily accessible.
3. Comfortable and supportive baby carrier: For keeping your newborn baby close while freeing up your hands.

Conclusion

Managing a newborn with Cystic fibrosis requires patience, persistence, and a strong support system. 

As a parent of a thriving child with cystic fibrosis, I encourage you to lean on your CF care team, family, and friends. 

Your strength and love for your newborn will make all the difference. My son is now 11 years old and doing amazingly well! 

He has clear lungs and passes his breathing tests and throat cultures. I can’t believe how quickly the years have flown by, but with faith, nothing is impossible. As they say, it takes a village. 

I don’t know how I could’ve done it without Anthony’s Father, his Grandmothers and Aunts, and the family’s support to help. I would love to hear more about your experiences as a parent and caregiver. 

Please share your tips, and I will credit you in my next article. Follow my Facebook page here and join my group today. Let’s connect!

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Disclaimer: 

Although following our instincts can be helpful for babies with CF, I recommend always following the specific guidance of your child’s CF care team.

These are suggestions based on my personal experience and may not be suitable for every family.

Please consult your child’s doctor for medical advice.

Resources:

https://www.cff.org/medical-professionals/infant-care-clinical-care-guidelines

https://www.babysfirsttest.org/newborn-screening/conditions/cystic-fibrosis-cf#:~:text=Early%20signs%20of%20CF%20include,Constant%20coughing%20and%20wheezing

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