Caring for Mamas Whose Baby is in the NICU

In honor of Prematurity Month and March of Dimes, we're bringing you a series of posts on prematurity and the NICU from mamas who've experienced it firsthand. All proceeds from the first 1000 All Over Ointments sold go directly to March of Dimes.

Tell us a bit about you, Brittany. What do you do?

Hi! I’m Brittany Jarman, a San Diego based mama and photographer. I love being outside in the sun, dressing my kids, and eating yummy food. I started my photography business, Reality, and Retrospect, a few years ago and love doing all sorts of shoots: commercial to families to weddings. It is amazing being able to work for myself while staying home with my kids. I was able to put my husband (and myself) through law school doing something I truly love.

Can you tell us about your beautiful family?

I have been married for five and a half years to the perfect guy for me. He is always patient with my super obnoxious requests and is the best travel buddy ever. I have loved watching him become an amazing dad to our 3-year-old son and our 1-month-old daughter. My little boy, Jay, loves trains, pancakes, and the beach. Cecelia is about as perfect as any baby can get and rarely complains even through all of her surgeries and procedures during her NICU stay.

I am amazed at how nice people have been throughout this whole experience. We have had so many visitors (who have brought both Cece and Jay presents), meals, and countless calls, texts, and messages. My friends made me a NICU survival kit with a cute bag to carry back and forth. I have had so many people step in to help take care of Jay and make sure he is having fun while I spend most of my time at the hospital.

The thing that has struck me the most though is the number of people who have told us we are included in their prayers. Not only friends and family but acquaintances and even virtual Instagram friends who I have never met in person. It feels like the most personal and best gift when people tell us they are praying for us, and we can definitely feel it with how many blessings we have gotten throughout this experience.

Let's get to it. Can you tell us a bit about your super recent NICU experience, Brittany?

Cece was born one month ago. As I was holding her skin to skin she sounded extra raspy so the doctors tried to suction her. They couldn’t get the tube down very far so they took her down to the NICU to see what was going on. I didn’t think it was a big deal and then I started getting some scary texts from my husband. At that point, we had no idea what was ahead of us. They immediately found that Cecelia had a tracheoesophageal fistula and esophageal atresia. Basically, the top part of her esophagus just ended in a pouch (which is why they couldn’t get the suction tube down), and the bottom part coming from the stomach was attached to her trachea. She had corrective surgery at 1 day old.

‘Two steps forward one step back. There are constant blows and changes while you’re here but you’re still always going to be moving forward and getting closer to leaving.’ 


Along with this they found several other problems and diagnosed her with VACTERL association which is an acronym for random birth defects that often happen together. They show in all sorts of ways but luckily Cece’s condition is a slightly milder case than it could be. V is for vertebrae: she has a growth on her spine that hopefully will not need any intervention but could mean that she will have scoliosis when she grows up. A is for anus: she has an anal fistula that will need to be surgically fixed when she is 3-6 months old. C is for cardiac: she has a large VSD (hole between her ventricles) that will require surgery between 3 and 6 months. TE is for tracheo-esophageal: She already had the TEF/EA repair but has a few other problems with her trachea that will need surgery as well. R is for renal and L is for limbs; luckily both of those are normal.

Realizing that we weren’t going to be able to take our baby home, or that she wouldn’t even be in my room with me at the hospital was so hard to grasp at first. It’s amazing though how quickly your thought process can change and make it seem like this is always how it was meant to be. Originally we were supposed to be here for only 2-3 weeks, which at the time seemed like an eternity. That was before we knew how serious her heart problem was and before they discovered her extensive trachea problems. We have been here for 4 weeks now. At one point we thought we would be here for 2-3 more months, but now it’s looking more like 2-3 weeks! Her Drs are hoping to get her home before her next three surgeries to give her time to grow and get stronger before they have to do anything more. When we first got to the NICU I had a friend whose baby was also here. She told me the best advice that I’ve gotten. ‘Two steps forward one step back. There are constant blows and changes while you’re here but you’re still always going to be moving forward and getting closer to leaving.’ I couldn’t agree more. 

Tell us about your "extended stay" in the NICU. That's anything longer than 10 or so days in the NICU, right?

There are a few things that I would recommend to moms who have babies in the NICU long term. 
  1. Take photos and videos every single day (which of course I would say since I’m a photographer but there’s a good reason). That way, when you are wondering if your baby’s breathing has changed or want to see her progress you have physical evidence. I keep track of Cece’s surgical site with photos, all of her breathing changes etc.
  2. Realize from the beginning that YOU are your baby’s consistency. My husband and I had a hard time with the constantly changing nurses and Drs. I finally realized that I am the only one who is here with her every single day so I need to be the one on top of her case. Don’t be afraid to ask the Drs to do things or bug them to help your baby move forward. You know your baby better than anyone there.
  3. Make yourself at home. Especially if you know you are going to be there for a while. Bring in the clothes you hoped your newborn would wear, get organized (my OCD goes crazy in this tiny room jam-packed with medical equipment). I have brought drawers to organize all of our things, her own shampoo and lotion, clothes and blankets. It took me a while to realize I could do this but it makes such a difference.

How have you felt supported through your family's time in the NICU? What has been most meaningful and helpful? 

I am amazed at how nice people have been throughout this whole experience. We have had so many visitors (who have brought both Cece and Jay presents), meals, and countless calls texts and messages. My friends made me a NICU survival kit with a cute bag to carry back and forth. I have had so many people step in to help take care of Jay and make sure he is having fun while I spend most of my time at the hospital.
The thing that has struck me the most though is the number of people who have told us we are included in their prayers. Not only friends and family but acquaintances and even virtual Instagram friends who I have never met in person. It feels like the most personal and best gift when people tell us they are praying for us, and we can definitely feel it with how many blessings we have gotten throughout this experience.

What would you tell someone who has a loved one with a baby in the NICU?

Do SOMETHING. It doesn’t have to be big. A simple message or text to say that you’re thinking about them. I always struggle when I see someone going through something tough that I will bother them if I contact them or will end up saying the wrong thing. But really anything helps. Or take them chocolate chip cookiesthose are always welcome. Brittany, thank you so much for sharing your NICU experience with us. We hope your story and advice is helpful to other mamas going through something similar. You can read more about safe skin products for preemies, what to put in a NICU care package for a friend, how to care for mamas whose baby is in the NICU, and the story behind Tubby Todd's collaboration with March of Dimes for Prematurity Awareness Month.

You can donate to March of Dimes through Tubbytodd.com by purchasing the Limited Edition All Over Ointment with a March of Dimes purple label. Makes the sweetest gift for your friend or loved one with a NICU baby.

 

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