Clearing The Fog: Advice For New CF Parents

Whether it is your first child or your fourth, a new baby brings physical, mental, and emotional exhaustion. Mothers are dealing with fluctuating hormones and the recovery period after labor or a C-section, and both parents might not be getting much sleep. But for new CF parents, this postpartum period has an additional layer of stress on top of an already exhausting experience. Many parents are still grappling with their baby’s CF diagnosis. They might be learning what this disease is for the first time and all the additional needs their baby will have.

Learning our daughter’s needs

While we knew months before our daughter was born that she would have cystic fibrosis due to prenatal genetic testing, it still took us a few days after her birth to fully realize the realities of having a baby with CF. Margo was in the NICU for 10 days for issues unrelated to CF, and for those 10 days, we utilized the wisdom and assistance of the NICU staff. While I would not wish a family to have to spend time in the NICU, in some ways it was a blessing for us. The incredible NICU medical staff helped us slowly adjust to her medical needs as we got to know our new baby.

Margo’s new CF clinical team was communicating constantly with the NICU staff about how to immediately get her on the right track for care. We met with a respiratory therapist, who explained airway clearance and demonstrated on a doll how we would eventually perform it on a newborn. We started giving Margo enzymes at five days old. At that time, she took one 3,000 Creon with each meal, every two hours. I will never forget the first time we gave her the pill. Many of the nurses gathered around us as we opened the capsule into a spoonful of applesauce— most had not seen a baby so young eat with a spoon.

I will always feel indebted to the NICU staff we encountered during those 10 days. They helped us ease into our new life with support and lots of encouragement.

Creating a new routine

Once we left the hospital and brought our baby home, no amount of support could help prepare us for the combination of new parenthood and cystic fibrosis. Margo weighed 5 pounds, 12 ounces at birth, and we knew the importance of helping her gain weight. I breastfed Margo and we supplemented with formula for additional substance. I was instructed to feed her every 2-3 hours, waking her in the night. Again, all typical newborn things.

Before we could feed her, there was the process of giving her enzymes, which was a task in itself. It involved scooping the applesauce into a bowl, opening and emptying the capsules into the applesauce, and adding a pinch of salt to ensure she was getting sodium. I would then spoon-feed a very sleepy infant cold applesauce, and then make sure she was awake enough to nurse within 45-60 minutes while the enzymes were active. My fingers were always crossed that she didn’t spit up, knowing that would affect the enzymes in her system AND she’d lose the valuable nutrients from the breast milk. This process on repeat every two hours was a lot to handle at first, particularly when dealing with a foggy mind.

Adapting to life as a CF parent

Margo drinking her bottle in the NICUAnother hurdle for us was performing manual chest physical therapy (CPT) on a barely six-pound newborn. While we knew this would be a regular part of our new routine, it still came as a shock when we actually started doing it twice a day. Margo mostly slept during it, but there were some positions she hated and she would scream throughout them. It was stressful and I’ll be honest — I was very resistant to CPT at first. While I knew it was non-negotiable, it took time and practice for me to become comfortable with it and want to take it on.

During the first year of Margo’s life, we had monthly appointments at her clinic, in addition to the regular pediatrician appointments. Our CF care team is wonderful and was particularly exceptional during that time period. As new parents and new to CF, we didn’t know whether something was happening because it was a newborn thing or a CF thing. Our team answered every question, big or small, whether we emailed them or asked them during our appointments.

Helpful tips for new CF parents

Leaving the house with a newborn requires a lot of stuff. Add in CF, and that’s another component to think about. We quickly learned to have multiple bottles of Creon in different places: house, both cars (being mindful of temperature), purse, and diaper bag. Other critical items for us: applesauce, clean spoon, small bowl, bottle in case she doesn’t want to nurse, sanitizing wipes. Eventually, we found our groove as new parents and this all became second nature to us, but we definitely had some hiccups on the way. Once you realize there are no enzymes to be found and a baby who will need to eat in about 10 minutes before she starts screaming, you don’t make the same mistake twice.

Meagan and her husband with Margo and all their packed up CF supplies

Here are some tips for new CF parents that we found helpful along the way:

  1. Buy a small six-can fridge for your bedroom. We stored the applesauce in the fridge to help with the 2 AM feedings. We also kept several clean bowls, spoons, and enzyme bottles upstairs as well.
  2. Keep the diaper bag packed with essentials: enzymes, applesauce, spoon, bowl, bottles, and sanitizing wipes. We had a checklist taped to the door and would double-check the bag before we left.
  3. Applesauce squeeze pouches are the best for on-the-go feedings. We actually figured this out late in the game and dealt with a lot of leaky plastic applesauce containers over time.
  4. Take your time in becoming comfortable with CPT. Communicate with your partner about your feelings if you’re feeling resistant or uncomfortable about it. Try to make it a family routine—sit together in the same room while one partner performs it, so the other can get used to it, even just visually. We would watch our favorite shows together during this time or listen to music, and try to make it as relaxing as possible.
  5. Teach someone other than you and your partner to do CPT. This is something that I wish we could have done sooner, but unfortunately we didn’t have family close by and we felt it was a lot to ask of our friends. Even if you assume no one but you will perform the CPT on your child, the weight of being the only caregivers feels less heavy when it’s shared with someone on the outside.
  6. Try to connect with other CF parents with kids 0-3 years ahead of you. Either they are going through the same experience of learning and balancing new parenthood and CF, or they are well practiced and can share some much-needed wisdom.

Take it day-by-day

Take comfort in the fact that, as with any new routine, it will get easier with time and practice. You will make mistakes and quickly learn from them. We had to make lots of quick stops at grocery stores to grab applesauce because we forgot to make sure we had some. Another time while traveling, we had to pack up an entire meal from a restaurant and head back to the hotel because we forgot enzymes.

As I write this article, I am nearing the end of my second trimester of pregnancy. We will be welcoming our second baby girl at the end of January 2021. Just like any other expectant parent, excitement is mixed with some nervous energy. There will be one major difference this time. Due to genetic testing, we know that our baby will not have cystic fibrosis. While I don’t like to say that this will make the newborn stage easier, I can say for certain it will be different this time around. No two newborns are exactly alike, so I’m sure we will still have some learning to do as we get to know the newest member of our family.

What tips do you have for new CF parents? Share in the comments below!

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