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I hate nighttime. I really dread it.

Evenings are wonderful, though. Ethan comes home from work, Daisy excitedly reports the big events from her day and begs him to play store or school with her. We always sit down for dinner as a “whole family” as we call it. Then we begin our lengthy bathtime/bedtime routine including book time, snuggle buggle time (special time for Daisy and me) and song time (special Daisy and daddy time). Ezra generally falls asleep somewhere around 8 pm and I usually have an hour to do as I please. I SHOULD sleep during this hour because it is the longest stretch that Ezra will sleep, but it is so hard to give up time to respond to email, write this blog, call friends/ family, watch mindless TV, or actually have a conversation with my husband… Usually around 9:30 I come to my senses and head to bed.

We have to start a feeding drip for Ezra around 10 pm. We do a slow drip through the night, which has helped him sleep a bit better. Now instead of waking up every 30 minutes, he will wake up every hour. Most nights there are a couple of hours where he is wide awake. Last night he was up from 2:30- 4 am. Sometimes he is very fussy during these awake periods. Other times he is smiley and engaging. I do my best to enjoy these middle of the night play sessions, but I am honestly so desperate to sleep at that point that I try to will him to sleep! Then there are the really scary times. Like most babies, Ezra wakes up crying. I pick him up and immediately try to nurse him back to sleep. Often, he will go back to sleep in a few minutes. Sometimes during the night, he starts doing a quiet little cough and gasps for breath in between the little coughs. Ethan is such a huge help during these times because it is too scary to handle it alone. Last Tuesday night (and again this week during a naptime) Ezra woke up and started doing an extremely weak, soft cough without any inhales. Terrifying.  Ethan immediately put Ezra on the cough machine and it woke him up enough to get his breath back. I was home alone with Ezra during the naptime incident and was panicked. Because I am not comfortable using the cough assist machine, the only thing I could think to do was zerbert his cheek… thankful this brought him around and he started inhaling.

We have learned to not only live day to day… but I honestly feel like I am living hour to hour. I just never know what Ezra is going to present with and his symptoms get so much worse at night. Did I mention how much I hate nighttime?

Quick Daisy story… a very dear friend of ours came to visit last weekend and brought Daisy a beautiful baby doll. Of course Daisy was over the moon and fell instantly in love with this doll. The doll had a cotton string coming out of her neck, for some reason and I asked Daisy if she wanted me to cut it off. She said, “oh no, mommy… that is my baby’s tube”. She is processing all of this stuff going on with Ezra in her own way… She is aware of things that no 3 year old should have to be aware of. She is such a sweet kid and we are so thankful for the normalcy she brings to our lives. Daisy loves her little brother and I can not articulate enough how much little Ezra loves his big sister. He lights up when she comes into the room and she can get him laughing just by turning her attention to him. It is beautiful to watch…

Ugh. Just saw the time… I should head to bed. Wish me luck.


PS: One last thing- Ethan is the manager of a really great band called The Band of Heathens. The guys have very generously started a fundraiser for Families of SMA. They have released a single from their new album and by giving a small donation to FSMA, you can get a free download of the song. Check it out here: . And if you aren’t familiar with The Band of Heathens- they are definitely worth a listen : .