We ended up staying two nights so they could monitor her, test for respiratory viruses, and see how her feedings were going. She has still had a little bit of difficulty with increased gravity feeds through her g-tube; it has been a little slow going. But recently, now that we are home (even though she has been sick), they have seemed to improved a little and she's tolerating a little bit more. Hopefully this can continue and we can get her eating more during the day so we don't have to get up and feed her at night. That is hard on Lily and mom and dad. Lack of sleep for a prolonged amount of time is rough, as many of you moms know. I feel like we are kind of back to a newborn stage again. Waking up a lot to suction/do her cough machine and feed her during the night. Poor girl. It's so hard to see her uncomfortable and we just want this cold to be over. Your prayers would be appreciated. These last few weeks have been tough. They have been hard on us all and the lack of sleep is definitely wearing on us.
Pray that Lily would continue to tolerate feedings and more volume so we wouldn't have to feed her at night, that she would recover from this illness quickly and her secretions would lessen, so she could rest comfortably. Pray that we continue to have the strength and the patience to take care of her the best we can and enjoy her for the sweet, happy girl she is. Illnesses are so hard on kiddoes with SMA and a simple cold like this just knocks them down harder than a kiddo without SMA.
Thank you all for your support and prayers. Although we don't always understand why Lily has to go through this and it's so hard to see her so uncomfortable, we continue to pray and trust that God has a plan for her, for us all. And we have reason to hope and to believe that she may be healed and her body will be strengthened. The last few weeks have just been hard on all of us and sharing about this journey we face with SMA means sharing about the good and bad and what we go through, even though sometimes it is overwhelming and sad. To end on a positive note though-Lily's pulmonologist, Dr. Starner told us in Iowa City this week that Lily was a strong Type 1 SMA and that we were very lucky that she was already 10 months old and not needing any respiratory support (bipap, vent) at this time and especially during illness. Praise the Lord for that. We have a very strong little girl!!
Lily has been sucking on her lower lip a lot lately---this is a common face for her :) Love that girl.