The First 6 Months Home from the Hospital

The first 6 months of Mackenzie's life was not necessarily easy, but it was the start to this winding road that we have gone on. We didn't really suspect anything was going on. We learned in the NICU that she was referred to Early Intervention through our state. When they tested her, we found out that she was significantly behind on a lot since they don't adjust for prematurity. We found out that she wasn't eating properly and since she wasn't eating properly and her entire suck, swallow, breath pattern was out of whack. At the end of January, we had our first experience with BRUE which is a Brief Resolved Unexplained Event. She was having blue spells, stridor, and some other symptoms including not breathing or gasping for air. Her PCP referred us to an ENT who did a scope while she is awake and found that she has something called Laryngomalacia which is a floppy airway. Originally, they felt that it didn't need fixed, so they started us on Pepcid since she was having reflux and if it didn't work then they were also going to refer us for a sleep study. 

A month later and we saw ENT and they ordered a sleep study. We met with her doctor at the sleep clinic and about in April we had a sleep study. Now, if you know anything about sleep studies, it takes at least 4 weeks to get the results. So, we were doing everything we could to keep her elevated enough while she slept so the reflux didn't make her cough badly or even stop breathing briefly. We got the sleep study done and while waiting for the results she ended up in the hospital. She was sick and ended up needing an IV in her head which was interesting to say the least and she wasn't tolerating the breast milk and the formula she was getting because she wasn't gaining weight. There were a lot of hospital stays with the first hospital that treated her due to her not gaining weight. I really wanted a GI consult because she was throwing up and losing weight. In May, she had COVID-19. During that time, I was terrified for her because of her breathing issues and being so small. She also showed no symptoms of the cold.

We got her sleep study results later in May which stated that she had severe obstructive and central sleep apnea and required oxygen at night. We would have to go back for a titration, and we learned that she required at least .25 liters of oxygen. After an illness she ended up needing .50 liters at night. At this point, I was still asking for a GI consult because I knew something wasn't right and that it was not just her sleep causing issues. We finally got a GI consult in July or August. I just thought finally we are getting somewhere and was angry that it took so long for her doctor to listen to me. At that point, I was looking around for new doctors for the kids because I was tired of the system treating me like I am the issue when in reality it was my daughter’s issue with gaining weight. We didn't have answers yet but in November we got the answer we were looking for. You are just going to have to wait for my next blog post because that is when we are going to get more information and add at least two more specialists to her team.