It is probably safe to say that while we are all glad that neonatal intensive care units (or NICUs) exist to help care for the smallest and sickest babies, no parent hopes to find themselves there. Having a baby in NICU can be a stressful, scary, and isolating experience for parents, including one couple who was brave enough to share their most personal pictures from that time.
After years of infertility treatments that included five failed IUI cycles, one round of IVF, and a miscarriage at 10 weeks, Stephanie DurfeeĀ and her husband, John, were thrilled to be expecting a rainbow baby. But just like the couple's road to pregnancy, Adeline's birth story was difficult when she was born 14 weeks early at just 1 lb., 8 oz.
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After Stephanie developed severe preeclampsia with neurological issues, doctors feared that she would have a stroke if Addie wasn't delivered ASAP.
Addie was born three months early and spent nearly the entirety of her first two years in the hospital as well as 114 days in the neonatal intensive care unit with her parents by her side. As this strong little girl has had to fight through surgeries, misdiagnoses, and medical setbacks, her mom wants people to understand what it was actually like during those terrifying first 16 weeks in honor of NICU Awareness Month.
To show what the NICU is actually like, Stephanie shared heart-wrenching photos that captured the pain she endured while fearing for Addie's life.
In addition to the poignant images, Stephanie shared on InstagramĀ the moment she received a call from theĀ NICUĀ telling her that she and John needed to pack an overnight bag and get there right away because Addie wasn't doing well.Ā
"When we got to the NICU, there was a crowd in her corner and the cover was off of her isolette. As we approached, we saw their long faces," Stephanie wrote. "They gave us a look that almost had an air of sorry-for-your-loss. You could see the worry and concern on their faces. This didn't help. This didn't reassure us in any way. Whenever something has gone wrong up to this point, we've been somewhat reassured because they didn't flinch. They didn't seem concerned. This was different."
"She wasn't moving. Barely opened her eyes, and only once."
When Stephanie approached, she saw just how "terrible" Addie looked with her usually pink skin taking a "greyish-blue" tone. Addie already had a ventilation tube placed down her throat, and Stephanie saw that her belly stretched so big that it looked like she could see every vein. "It tugged at every string in our hearts," she wrote.
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Despite Stephanie's shock over her baby girl's condition, Addie's doctors and nurses told her that she actually looked better than she was.
"I'm glad we didn't see her at her worst. I could barely stand seeing her like this," she wrote. "It felt like all of the progress she'd made in the days prior came crumbling down, in an instant."
On this day, Addie was diagnosed with necrotizing enterocolitis, which is a life-threatening condition that causes intestinal tissue to die. "The number one reason why preemies die in the NICU," Stephanie wrote. "She survived … only 50 percent do."
During this heartbreaking time, John wrote about what it's like to be a NICU dad as the women in his life both fought to be strong while suffering.
"Understandably, mama has been so single-minded in her focus on being there for Addie that she forgets to take care of herself. She doesn't slow down. She doesn't let up. She's stubborn. Addie has inherited that stubbornness and I know that's what will get her through her stay in the NICUĀ …" John wrote on Facebook. "As I've watched her fight, grow, and progress over the last three weeks, I have a feeling in the pit of my stomach, a voice telling me in the back of my brain, that she's going to be OK. And not just OK. She's going to be special. Not just because she's my daughter. Not just because she's a miracle. Just because."
John was right!
As this grateful family continues to celebrate how far Addie has come, they hope that sharing their pain will help to raise awareness for other families that are just starting their unthinkable NICU battles.
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