So, in my last post I didn't mention anything about the babies continued use of oxygen at night because I was hopeful that I would soon be able to report that they got the okay to come off completely.
Well, it turns out that both babies will be on oxygen only at night for at least 2 more months. It has been a frustrating journey but I feel like we've finally gotten some understanding into why this is actually necessary. For a long time it seemed like our pediatrician was just being hypervigilant and over treating our children. I am of the mindset that if my children seem healthy, then they most likely are and I don't want any interventions unless absolutely necessary.
Both Joel and Elaina have successfully passed their overnight oxygen test which is usually all that needs to happen to get the order to stop oxygen. However, our pediatrician was still concerned about some dips she saw in their oxygen levels a few times at night. So, she ordered a sleep study to be done for Elaina. We had that done on July 23rd. I took her up to Children's hospital in Denver that evening and she was hooked up to about 30 different wires. Is was a horrible experience for her. She usually sleeps like a champ at night, waking once to feed but sleeping well the rest of the night. Well, the night of the sleep study she woke up screaming every 20 minutes, she was stiff and uncomfortable, had a terrible time trying to nurse because she had this rhino horn type thing sticking down from her nose over her mouth, and then in the morning when all the wires were removed she had a big goose egg and circular red mark on her forehead where one of the electrodes was jabbing into her skull all night. I left the sleep study praying that we would never have to return.
the happy girl completely oblivious to what is about to happen
this was the end result, she was so miserable and who could blame her!
About a week later we received the results of the sleep study. The recommendation was for a pulmonary evaluation by a pediatric pulmonologist. From my knowledge of medicine as a registered nurse, the results honestly didn't seem that concerning, but my pediatrician still wanted us to see a specialist because as she said, "I am jack of all trades and not an expert in anything". She didn't know how to read the data from the sleep study and was unable to answer our detailed questions. I set up an appointment with the specialist hoping and praying that we would see a doctor who would be able to see the truth, and if my babies are fine and healthy then we would stop needing to see doctors and we wouldn't have to have a second sleep study done.
Yesterday was the appointment with the specialist. God answered my prayers in a very clear way! We saw a doctor who was very down to earth and who looked at all the information and asked us a lot of questions about what we as the parents notice about Elaina's sleep and breathing patterns. He also explained the results of the sleep study. In the end, he told us that he is the type of doctor who tends to be on the side of less interventions. He said that both Joel and Elaina are having episodes of periodic breathing which is quite normal for babies in high altitude, and that oxygen at night is the best and only thing they can really do until they get a bit older and outgrow this issue. He explained that most likely without oxygen they would both be fine but it is better to be safe than sorry because if one of them would die of SIDS without oxygen we would always wonder if we could have prevented it simply by putting oxygen on. After his explanation, it made so much more sense to me why they should still be on oxygen. The best part of the appointment was that he agreed we do not need to do another sleep study, hallelujah! He wants to see the babies again in 2 months and indicated that if they are doing well and thriving at that time, most likely he would be okay stopping oxygen.
I left that appointment feeling like a weight had been lifted and felt like God had answered my prayers in a very clear way by allowing us to see the doctor that we did. Hopefully in 2 months I will be able to report that both babies are oxygen free at last! In all of this though, I am extremely grateful that this is the only health issue we are facing. There are lots of parents out there facing so much worse with their kiddos.
