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?
Can you tell us about your beautiful family?
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?
‘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.
Tell us about your "extended stay" in the NICU. That's anything longer than 10 or so days in the NICU, right?
- 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.
- 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.
- 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?
What would you tell someone who has a loved one with a baby in the NICU?