We have been cautioned that the stay in the NICU will be a roller coaster full of ups and downs. The hard part is that we don’t know what those downs will be or when they will happen.
Today, the doctor called me and the first words she said were “Don’t panic.” I’m not sure of any words that could be better used to cause panic. She followed by explaining that last night, Aubrey was not as active as he usually is and his belly seemed swollen. They did an x-ray and his bowels seemed fine and his lungs seemed fine. However, yesterday, they tried to extubate him (remove the tube in his lungs that helps him breathe) and he did well but the level of C02 in his blood increased. That indicated that he couldn’t breathe deeply enough on his own. Because of that, they intubated him again (put the tube back in). Brise and I weren’t upset by this because we had been warned that this happens regularly. It is a big surprise that Lydia has gone this long on only the CPAP (the next step after extubation).
In addition to the lack of activity, Aubrey had some blood in his lungs. I had thought it was from all the activity he had in his lungs. They treated it will some cold saline and I thought that was that. But they did a whole blood cell count and his white blood cells were elevated. So the conclusion is that they may want to treat his PDA tube.
This led me down a spiral because I didn’t understand how everything was related. So I called on my mother-in-law who is a nurse practitioner to help me. She called the hospital and spoke with the nurses there and then she translated for me. She was very reassuring but I still just was stuck. So I called on my old college debate partner, Patrick Jackson, who is a doctor but one who studies viruses. With the caveat that he doesn’t do anything with children and it’s out of his wheelhouse, he let me rattle off everything I had heard and then helped me translate the foreign language the doctors have been speaking. This is what I have put together:
When babies are in the womb, they don’t use their lungs. Instead, they get oxygen through the placenta. However, they are still using their heart. In fully formed babies , children, and adults, our lungs supply oxygen to our blood every time we breath through little veins in the lungs (capillaries). So, how does an undeveloped baby prevent blood from going through the lungs? They have a tube/hole between the parts of the heart that creates a bypass from the lungs called a PDA. Some babies and most premature babies are born with the PDA still in place and, generally, it will grow closed on its own. Both Lydia and Aubrey have the PDA still in place. We have been waiting for it to close.
For Aubrey, the doctors are watching because they believe the open PDA may be causing a pressure issue or other problem so that the blood that is going through the lungs (because now it is) is being impacted by the PDA causing the capillaries to leak blood. To fix that, they would need to treat Aubrey with medication that will treat the PDA. However, that medication may cause a bowel perforation (which is very bad).
What I think is important is that the PDA is not necessarily an issue so the medication is not necessary. If it does become necessary, I will speak to the doctors and ask them how they monitor for a bowel perforation and what they do to treat the perforation if one should happen.
We know the doctors wouldn’t do anything put any of our babies at unnecessary risk and we are comfortable following their advice. However, only after relying on family and friends to help me process what the doctors were telling me was I finally able to take a step back from my anxiety.