Preparing for a NICU Stay

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.  

Camden had open heart surgery at just two months old. I watched her round the clock to see if she turned blue, or be careful while she ate that she didn't sweat too much (indicative that her heart was working too hard). 

After Camden's surgery, we were expected to be in the NICU for 14 days, but were home in five! It's been nearly six months, and unless you know she had open heart surgery, aside from her barely visible scar, you would never know. She is thriving. Our medical support team was incredible and our surgeon was a God-send. He actually performed over 600 open heart surgeries on children last year, so we knew Camden was in good hands. NICU nurses are angels. I can't imagine the patience, strength, and love it takes to be a NICU nurse. 

1. 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. 
2.  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. 
3. 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.)
4.  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.  

• 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. 

Morgan, 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.