Dear a child with "a double bubble that equals trouble" (duodenal atresia ),
For the first few days of my sweet daughter's life, we had no idea that she was sick. Tess is my fourth child. She got a perfect score on her Apgar exam. At 4-days old, I took her to the hospital Emergency Department (ED) for dehydration. The doctors thought she had a simple jaundice problem. We spent a couple of days under the "bright lights" and were getting ready to be discharged to head back home.
One of the scariest things about my experience was how quickly things started to fall apart for my newborn daughter. I nicknamed it "her dive bomb towards death." At one moment I was crying because her low temperature meant that she had to spend more time under the warming lamp. After 72 hours of being under the bilirubin lights to treat jaundice my arms were aching to hold my baby girl!
A few hours later, baby Tess was moved to my local hospital's Neonatal Intensive Care Unit (NICU). It seemed like every minute brought more bad news. My child looked so awful. The thing that scared me the most was the nurses' facial expressions. They went from friendly and reassuring to extremely grave. I knew I was suddenly thrown into this unfamiliar role of being a "mom whose kid was dying."
When we got the final diagnosis of duodenal atresia, it was a huge moment of hope for us. I didn't realize it though, at the time. I focused on how awful it was going to be to have a teeny, tiny newborn get major abdominal surgery. I was very frightened that we were moving to Children's National Medical Center. To me, it seemed to say that my daughter Tess was "weird" and "one of the sickest babies in the entire DC area."
I'm Catholic, so I begged the doctors not to move the baby until after we had an emergency baptism for her. That was easily accomplished because we were at a Catholic hospital. (I think that even non-religious hospitals always have a Catholic, Protestant, or other religious leader on call for emergency situations like this). While we were baptizing my daughter, I felt very strong and confident. This was the one thing that I could do for my sick child and I knew it was the most important thing in this tense and chaotic moment. Immediately after the baptism, my husband left to drive to Children's National because there was only room for one parent to ride in the ambulance.
I was all alone in a room with my green, listless baby girl; I immediately started to fall apart. My legs felt weak and there was no chair for me to sit on in the small NICU work area. It was one of the worse moments of my life. I didn't recognize this sick infant in front of me. I didn't have anything to do, or any role to play in her care. I felt so useless and scared.
Into this scene walked those red shirted, heavy booted Children's National Transport nurses. My lead nurse was named Janice. Janice and her team were calm. They were steady. They were cheerful. I remember how Janice talked about how my daughter had a pretty face and congratulated me on being a new mom. They carefully explained everything that was going to happen. I remember just feeling this total sense of hope and relaxation at once. "If this is what the people at Children's are like," I thought with the first feeling of hope I'd had all day "my daughter is going to a good place."
That's what I feel about Children's National to this day. It's a good place.
It's a good thing that your kid is here! Doudenal atresia is 100 percent treatable with surgery. My daughter Tess is cured for life. She walked out of a 3-week NICU stay with only the instructions of "take a little ulcer medicine for a few weeks." She's about to turn one next week. To look at her you'd never know that she was ever so sick at birth!
The thing I like most about Children's National is that they don't just take great care of the sick children, but they also take great care of the whole family. We were greeted like old friends every time we entered the NICU. My oldest daughter got to visit her sick youngest sibling in the NICU. The joyful picture I have of their sweet interaction is a photo I'll cherish forever.
So my advice to you, is simple. You can do this! Your kid can do this! You will be amazed at how tough your little newborn is. During this very tense situation, please try your best to eat, sleep, pray, and take just a few breaks each day outside your baby's NICU room. Give love to your baby's other parent, as well as to yourself. This is hard for him (or her) too.
Now that we're safely out of all danger, I actually treasure a few beautiful memories we had inside the NICU. During the midst of it, however, I was so upset and angry that my youngest child wouldn't have the sweet, happy "babymoon" of her older siblings. Yet once I put together her baby book I had a shock! Baby Tess had a lot of strangers meet her during her first month of life, but she also received so much of their love. Her baby book is different from her older siblings, but no less wonderful. Love exists in the NICU!
Teresa's mom, Abigail