Quarantine before it was cool!

We received our discharge paper after spending a week in the NICU. She was still tiny and was sinking in her car seat, so we had to add an extra layer of padding. That didn’t matter; my daughter was beautiful, and I just wanted to hold her all the time. (Some clarification: that while at the NICU, her doctor ordered a genetic test, but when we left the hospital, we didn’t know we had a 22qtie). Additionally, this little girl suffered from reflux, which made her milk come out of her mouth and nose. I was terrified; I had never experienced anything like that. The worst part is that I was still blaming myself for this and wishing that I was the one going through that.

My daughter had difficulty latching to her mother, which might have been good because the thin breast milk would just come right back up. When we left the hospital, we left with a tub of thickened baby formula -it was the one she could keep down the longest- some premie diapers, and the relief that we were able to leave the hospital.

We brought her home, and she spent time in the arms of her family, who loved her. Everything was falling into place, orso we thought. Soon after my mom and siblings left, we stopped at Buy Buy Baby to pick up some thickened formula, more diapers, and more premie clothes. As we are walking in, my daughter stops breathing once again and turns blue. This time, she wasn’t returning to her normal color. I was screaming inside, cursing everything and everyone. I was blaming her mother because she was holding her, but in reality, I was just blaming myself. This time, we had to call 911 to get some help.

When the paramedics arrived, this wonderful angel returned to her normal color. That’s just how it goes. We finish shopping and make our way home. The days became a vicious cycle; she would turn blue, come back to normal, spit her formula through mouth and nose, and she would not sleep. Her mother would not sleep either, she was afraid that she wouldn’t be able to hear her soft cry. It was like that until her two-week check-up, only a week after we were discharged from the NICU. We check in with the front desk and are immediately taken to a room. I thought, “Wow, being early pays off.” But that was not the case. The doctor enters with a tissue box ready to explain the genetic test. The diagnosis was official, 22q11.2 Deletion Syndrome or DiGeorge Syndrome.

The doctor went on to share what that meant and explained that my daughter’s immune system was very low. We experienced a quarantine before it was cool. We would hang out in a room where only her mom, the nurses, and I could be in the same room for the next two weeks. Mom stayed with her through the night, and I went home to put my other daughter to bed.

When I would go to the hospital to hold my daughter, I would have to put on gloves, a gown, and a face mask to protect her.

By this point, I had learned to stop looking for someone to blame and enjoy the moment. And that is what I did. I would spend 12-14 hours in the hospital and go home. I felt alone; my friends were nowhere to be found. I don’t blame them; they knew very little about the situation. But still, I felt alone.