After 64 long — and sometimes scary — days in the neonatal intensive care unit (NICU) and three surgeries, I remember hearing those magical words: “You’re going home tomorrow.” I looked at our nurse and asked her to repeat herself because I was in shock. We were actually in the middle of our “going home” classes. I ran back to the room to grab my coffee and walked in as our doctor was telling our nurse that our girl was ready to have her PICC line removed and that we could go home the next day. The emotions I felt were insane. I immediately started crying tears of joy.
Let’s rewind for a second — when my husband and I first got the news that we were carriers for CF and learned that our daughter could potentially have it, we had no idea what we were getting into. Granted, my husband has a cousin with CF, but we didn’t know what parenting a child with CF looked like or what that meant for our girl.
We definitely weren’t expecting a meconium ileus — a bowel blockage — which required surgery at 3 days old to remove a small part of part of her bowel, a stoma and fistula, her prolapsing that stoma several times and forcing an early reversal surgery (surgery number two), and then a third and final surgery to repair a tiny hole in her bowel that was causing her stomach to be distended. Luckily, once that was fixed her body began doing what it was supposed to, and we were on the right track. We restarted bottle feeding and she was taking it like a champ. We’ve never had any issues with that — this girl loves her bottle.
About a week and a half after her final surgery, I finally had the guts to ask that daunting question: “What is our timeline … to go home?” The doctor looked at me and said that if she continued the way she was, we would be home in two weeks. We headed home a week and a half later.
The day that we went home was an absolute blur. We stayed at the hospital the night before because we got moved to the pulmonary floor to eventually be discharged. But, the pulmonary floor didn’t have the NICU camera — that’s the main reason we stayed. My momma heart couldn’t handle not being able to physically see my girl. Could I have called to check on her? Sure, but it wouldn’t have been the same. To say we had little to no sleep would be an understatement. But looking back, it prepared us for being at home because on this floor we were free from all the wires and monitors. If we had to begin caring for our girl without those wires and monitors for the first time at home, I don’t think I would have slept at all.
But back to the point, the day we went home was crazy. I felt very confident when I left the hospital, but I had a meltdown after we got home because I was terrified of messing up her medications or her formula. When we came home, she was on several medications, including salt, a medication for her bilirubin, multivitamins, and enzymes. Some of the medications were twice a day, some couldn’t be mixed with others, and I was immediately overwhelmed.
Now that we’re home, we have a great routine in place, and I now have some tips and tricks I would like to share:
- Write things down. When you’re in the NICU, at appointments, at home, etc. I have a dedicated notebook that I can use to write things down as I think of them. I have experienced the realization that I was going to ask a question during an appointment, only to space and totally forget what that question was once we’re there. So, I’ll bring a notebook and write down things as I think of them, and then check things off once I have asked or called about it.
- A tracking app. Seriously, it’s my favorite thing. There are many apps to choose from, but the Huckleberry app is my personal favorite. I record everything and I love that you can customize what meditations you’re giving. After originally planning to print a check-off schedule, I remembered the app. This app has been the best thing I’ve found. You can track medications, feeds, diapers, solids, pumps, activities, and sleep. I knew I would need to record how many diapers we needed, what kind, and what they looked like. I’m sure I’ve missed some things, but it took off a lot of the pressure I was feeling because I could look back on the app and see what medication she received and when.
- Creon® and multivitamins. I noticed taking Creon and multivitamins was upsetting for our little one. The one thing that has worked for us is putting them in her applesauce, which I measure out and put in the fridge. Game changer! It’s not as harsh on her tummy and she doesn’t spit it up nearly as often as she was when we were putting it in her bottles. (Again, check with your CF care team to make sure it’s okay!) I love using small containers for the applesauce because it makes it SO easy to travel! And no mess! Plus, it allows me to have her applesauce ready to go for the day which makes feeds so much easier.
I hope that one (or all) of these tips can help someone out there!
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