Avery home again, Emily still in hospital

Hi All,

Hope this email finds you all doing well. We are blown away by all of your support and advice during this neverending saga. I stayed at the hospital (Pediatric floor) in the room with first Emily then both girls for 8 days. It may be insane but I never even went outside in those days, the only time I left the room was if Bob or my mom was in the room with them. This is how little faith I have in the monitors and the medical staff's ability to monitor the monitors/babies.

Once again I was pushed to voice my displeasure with the lack of monitoring the girls. Alarms would go off constantly, some real events some false alarms. However, no one came into the room no matter what. Guess they figured I would handle it. They basically didn't do anything but check vitals and were around in case they needed CPR. Keep in mind they eat every 2.5-3 hrs and hardly ever at the same time. I was starting to expect my paycheck for being a nurse to two patients. I fed them (which is why we were there - feeding issues), changed them, catered to their every need, etc. etc. etc. Hours would go by without seeing a nurses face. What if I weren't there? When we were admitted they said we could either stay there or go home, our choice. There is no choice......although it meant I literally never closed my eyes. Finally, I was about to collapse (after asking the nurses for help and getting pushback).

This time instead of trying to resolve directly with the nurses or staff I went directly to the social worker and actually got results!!!!! After this I got help. Bob is up there now with Emily and I am at home with Avery. Avery is HUGE! She weighs 6lbs 8 oz. -- she gained 4+ ounces in one night! She is doing well. With diagnostic testing and help from the Speech/Lang Pathologist we have learned to feed her to help her apnea/bradycardias. Her problem is that she LOVES to eat, gets too excited and gulps.

Emily weighs 4 lbs 14 oz. She is doing better with help in eating techniques, but her congestion is terrible. She has Nasopharengeal Reflux -- the milk goes behind her nose, creates mucus and clogs her nose. Babies only breathe through their nose so this is a problem. She burns so many calories trying to breath and keeping her heart regulated that it's hard for her to gain weight. The only solution is suction. I make the nurses suction her nose before every feed so she can breathe and maybe eat better. After she eats her nose is stuffed again.....milk. More to come, but basically just watching and waiting on her. For now she will stay in the hospital. Please pray for little Emily. The dr's say it's just a matter of time before she will outgrow this problem, but she pretty much hates life right now.

Heather