Preparing for a NICU Stay
Hi Morgan! Tell us a bit about you.
Tell us about your beautiful family of four.
Four years ago, I married my amazing husband Chandler, or "Muscley Arms," as I call him, and we now have an almost three-year-old son, Covey (Covington) and a nine-month-old daughter, Camden. Our boy survives on a diet of Pancakes and fruit snacks (facepalm), loves all things trains, tractors, and race cars, and is literally my very best friend. My daughter is a happy, strong-willed, doe-eyed, Gerber Baby-charmer with a love of just about everything. Most importantly, she's healthy. But it wasn't always that way.
Could you tell us about your stay in the NICU with your daughter?
The next morning we got our diagnosis: Tetralogy of Fallot (the same one that Jimmy Kimmel's son had). It's a defect that consists of 4 different heart defects. She had a large Ventricular Septal Defect/VSD (hole between the bottom two heart chambers), this was potentially the most severe, and if not corrected, she wouldn't live beyond three years old. She also had right ventricular hypertrophy, or an enlarged right ventricle (it was working to hard pumping blood and therefore the muscle was growing too big), an overriding aorta (the aorta is the tube that takes oxygen to the lungs. It was slipping through the VSD hole and her oxygenated blood and deoxygenated blood were mixing. This was making it so that her blood was not getting enough oxygen, and why the nurse told us to watch to see if she turned blue. ToF babies are often called "Blue Babies," because their hands, feet and lips are often blue from not getting enough oxygen.) The fourth defect is a Pulmonary Stenosis, or a narrow Pulmonary valve blocking blood that needs to go to the lungs to get oxygen. When babies have a Pulmonary Stenosis, they usually need open heart surgery every 5-10 years, for life, to replace the valve as they grow. They can't play sports, and tire very easily with simple tasks. Needless to say, it was a devastating diagnosis. Her little walnut sized heart was a mess with a total of 8 defects.
"Her little walnut sized heart was a mess with a total of 8 defects."
"NICU nurses are angels."
For other moms who are anticipating a NICU stay, can you share how you were able to prepare mentally for a NICU stay and surgery?
- Pray & ask to recognize tender mercies The only thing that got me through the darkest days was prayer. Until Camden was two months old and had her surgery, we were not able to take her out of our house. It was the height of flu and RSV season, and even a small cold could have killed her. We weren't allowed to have visitors, and we weren't allowed to send our toddler to other people's homes/daycare/preschool to avoid him bringing germs back home. I relied on God all day every day.
- Enlist the help of a support system (family, friends, online groups) Sometimes its hard to share difficulties, but I say, shout them from the rooftops! Create awareness so that you can build a strong support system that can support you while you pour all of your efforts into caring for your baby. Family, friends, and strangers from across the world prayed for us, and even donated blood to Camden for surgery! We joined a Facebook group that was just for the parents of babies with heart conditions.
- Learn the vocabulary and be the most knowledgeable person in the room about your child's condition I was a Pre-Med major, and so I think that totally gave me a one-up on the "lingo" when talking to doctors and surgeons. When it comes to your child's condition, Google is your best friend. Learn all abbreviations and terms (the medical ones) associated with your child's condition. Be the most knowledgeable person in the room, next to the surgeon. Take notes if you have to. (I documented our journey on Instagram, so I could refer there if I needed to.)
- Keep your mind busy (#wearredforcamden) Focus on the baby steps of progress, or you will go crazy. We knew that sitting in the waiting room during Camden's four-hour surgery would be torture, so we created a hashtag, #wearredforcamden. A few days prior to her surgery, we invited all of our friends to wear red on the day of Camden's surgery. On Camden's surgery day, we were INNUNDATED with photos, and so busy thanking everyone on social media, that her surgery seemed to be over in the blink of an eye.
How should parents prep for a NICU stay? What stuff should they take?
- Pack your hospital bag. Socks, baby mittens (so they can't tug on tubes and wires), blankets that smell like home, and a comfort item (binky, etc.). Camden had SO many tubes and wires that clothes were impossible. You will need a going home outfit. (Don't be like me and forget one). Pack stuff for you and your husband. Comfy clothes, snacks, fuzzy socks, pillows, a breast pump (so important), tablet, or laptop (for entertainment) are my MUSTS.
- Arrange childcare for siblings, or plan to alternate schedules with your partner Children under 18 years old are not allowed in the NICU, so having childcare for any siblings is imperative. We don't have family close by, so our nanny saved us. She took Covey during the day and a few overnights so that we could be in the hospital with Camden, or get sleep at home alone. Chandler and I also took turns sleeping at the hospital. If you've ever stayed in a hospital, you know that sleep is impossible. There are too many nurses coming and going and too many machines beeping. It's so important to take care of yourself, so take a break to go home and get sleep.
- Utilize the Ronald McDonald House Along with our nanny, the Ronald McDonald House Charities SAVED US. The charity and all of its amenities are FREE to use for families with children staying in the NICU, and they usually have a location right on the children's hospital campus. RMH provided Chandler and I ALL of our daily meals, drinks, and snacks for free. They offer rooms for families who have to travel (like hotel rooms) so that they can be close to their baby at bedtime and not spend a fortune on hotels. There were napping rooms, showers, yoga classes, a library, and even Easter Baskets for our kiddos since we were in the hospital over the holiday.
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.