We lived in a multigenerational house. My husband and I and our children lived in a house with my mother and my elderly grandparents. Because of this, we spoke with the pediatrician about what we could do to make our environment as healthy as possible for Phoebe. He suggested that everyone who lives in the home should receive the flu vaccine and the adults should receive the adult pertussis vaccine. Since my grandparents had a home health aide that came to help care of the them a few days a week and a visiting nurse who would come once a week, it was recommended that we make sure they had received the flu vaccine as well. It was emphasized that people who had not received the flu vaccine posed a great risk to Phoebe. So we made sure our friends and family were aware that even though we respect their choice to not be vaccinated, we had to refuse them from visiting Phoebe for the first two months once we came home. As much as people wanted to come and see her, they understood that what we were doing was in the best interest of our tiny baby girl.
When Phoebe was 24 hours old she started to show signs of jaundice (yellow color of the skin from bilirubin). The protocol for jaundice is to do a heel prick blood test to check her bilirubin levels at set time intervals which could vary every four hours all the way up to every twelve hours. Depending on how her levels were doing would determine whether or not she would be discharged with me the following day and whether or not she would need to go under the lamp for phototherapy to help reduce these levels. The number they were watching for was 12. They did not want to see her number go above that. Through out the night they kept checking, but her level kept rising.
The morning I was being discharged, Phoebe’s levels had gone up to 14. They had already placed her under the phototherapy lamp when they came in to tell me that they would not be discharging her. My heart sank. I was going to be leaving the hospital without my baby. And what was worse was they couldn’t tell me when I might be able to bring her home. It all depended on how well she responded to treatment. I hated the idea of leaving without her. I hated that she wasn’t even a full 48 hours old yet, and she was already facing her second medical issue.
As I started to pack my things I began to cry. And it was not easy having to explain to every nurse and medical professional that I was not experiencing baby blues, I was just heart broken that I couldn’t bring my daughter home with me. Those exceptional people completely understood and told me that if I wanted they would set up a room for me to come back later that night so I could stay near her. Knowing I could come back did help a little. I determined that I would go home, see my other girls and get the preemie clothing and diapers we needed. Phoebe had dropped down to 4 lbs 13 oz, so I knew that the newborn clothes and diapers would not fit her at all. I had my plan in place, and when I had finished what I needed to do, I would then return back to the hospital to be near my girl.
After I finished all of my errands and was preparing to return to the hospital I received a phone call from the pediatrician about Phoebe. Her levels were still high but were starting to come down. She understood that I wanted to come back up to be with my baby, but encouraged me to make my visit short because the best thing for Phoebe was to be under the phototherapy lamp. I explained how I wanted to spend the night, and she told me that it would be best for me to spend my night at home, in my own bed and that she would call me in the morning with an update. I reluctantly agreed, and headed to the hospital with my husband.
When we got to the hospital, we were led into a small room off of the nursery where we waited for them to get Phoebe out from underneath the lamp and bring her to us. Once I had her back in my arms it felt like everything was going to be ok. I soaked up every minute of cuddling with her and telling her all about the clothes and preparations that we had done to hopefully bring her home soon. We stayed for only twenty minutes, and by no means was that long enough. It broke my heart all over again to leave her there. I just had to keep reminding myself that the phototherapy is what she needed to get better.
I had a rough night sleeping once I got home. I kept tossing and turning and thinking about my innocent little child up at the hospital.
In the morning the pediatrician called as she said she would, and Phoebe’s levels were still coming down, they were at 11, but she wanted to keep her under the lamp for another eight hours at least. My heart sank more because I knew I couldn’t go pick her up then. The ray of hope she offered was that if her numbers were even lower that afternoon she would discharge her to come home that evening. She said she understood that I wanted to come up to visit but explained again that if I could hold off until after the afternoon blood test Phoebe would get the most out of phototherapy. It is definitely a very difficult task trying to stay away from your own child when all you want to do is hold them and protect them. It is also difficult to accept that there are some things you just cannot protect them from. It was agony but I kept myself busy at home, jumping every time the phone rang hoping it was that call saying Phoebe could come home.
Finally, at 3 pm the pediatrician called. Phoebe’s numbers were down to 9, we would need to do follow up blood tests at the hospital the following morning to make sure her levels were still going down, but she had responded so well to the treatment that she no longer needed it so they were discharging her to come home! Finally my baby girl was coming home!
At only three days old she had overcome her second health issue. What none of us realized was that this was only the beginning of Phoebe's medical journey.
Photo: Back to visit Phoebe the day I was discharged and she had to stay