Good Evening!
Hope you all had a great day! Riley was able to get out of the room today for a swallow study. She had been having trouble with her oral/bottle feedings and so the team wanted to make sure she wasn't aspirating any of the milk. As it turns out she was aspirating a small amount during feedings. They tried to give her thickened milk to see if that would help and it didn't. Unfortunately for kids like Riley, it is difficult for them to figure out how to coordinate the sucking, swallowing, and breathing to allow them to eat.
We will be giving her another week or two before trying to feed her orally again to give her time to grow and mature. Don't worry, she still gets her full feeds via her NJ tube.
On a very happy note, I had met a family in the MSICU whose son had been there since just after birth. He is now over 2 years old. They have received the happy news that they are being discharged Thursday to a local hospital in South Carolina. It was amazing to see the strength of this family where the mother lived here in the hospital, and dad lived in SC with their daughter for the past two years. I am so excited for them, and can't even imagine the joy they are feeling right now!
With this setback in feeding, we will obviously be here for several more weeks, but truly all that matters is that we will be bringing her home at some point. What can be better than that?
Sandy and Brian,
ReplyDeleteWhile I know you would say that the two of you and Chase are the lucky ones for having Riley come into your lives, and you most certainly are, it goes without saying, that Riley could not have found her way into more loving arms than what you and Brian have embraced her with.
Your love and strength has not only been a gift to Riley, but it has been a gift to all of us whom have followed your journey these past few weeks. You have shown us all the courage and wisdom that we could only wish we would have ourselves, if we were in your shoes.
But, we also know, that behind your outward strength and totally impressive positivity, lie moments of fear, terror and whatever other challenging emotions come with seeing your child endure what Feisty Riley Mae has endured. None of us can begin to imagine what it has been like to be in your shoes over these past few months.
We continue to send prayers and wellwishes, and we anxiously await Riley's arrival to her home at 647 Rogers with her big brother Chase Milo.
Love you,
Auntie Mary
Auntie Mary has said it all with her post. We echo her thoughts and words. Thank you for sharing the wonderful news about Grayson....I will say a little prayer for him and his family as this new chapter unfolds for them with both happiness and new challenges ahead. Love you all! "Mom"
ReplyDelete