Monday, September 14, 2009

Ryley 09-14-09

Ryley has had 2 days of alarms now, and I fought with a nurse today to put in a smaller feeding tube. She struggles with and obstructive airway, but because gavaging is faster with the bigger tube that is what they put in. I won, and she no only has a partially obstructed nasal passage. (up to 2 days ago her feeding tube was in her mouth because of this) She was taken off caffeine today, so we are watching her to see if we have a set back, or if we get to keep moving forward. her feeding went well today, but it is moving slower that I would like to see, but she is earlier than Ethan, and I remember it being hard to establish with him as well. I have a fancy little camer that a sweet friend has let us borrow, so I have some more pictures, they will be up tomorrow.

6 comments:

Jared and Liam Craig said...

i dont know much about your last babies and their problems but sounds like this has occurred for you guys more then for one child! you are sooo strong! I look up to you! I did even before Ryley I was always in awe how you always did so many fun crafts with your boys and how you find the time, patience and imagination!!!! simply you are an amazing strong woman! and I know Ryley has got to have your gene's so she will be strong as well!

Kat said...

Just wanted to let you know we are still praying for you and thinking about you guys:)

Sheila said...

I'm proud of you for being proactive in your daughters development. Fight for her when you truly believe in something. Sometimes the medical folks need to be pushed a bit. But don't rush if she really needs time. When we brought Kezi home it was actually more frightening than I thought and wished that I had given her just a bit more time and stayed in the safety zone of nurses around. This waiting time will fade away in your memory when she comes home. All will be well and your family will adjust and rise to the occasion for you. But I do feel your anxiety. Been there many times. You are loved and prayed for. Kiss Ryley for me.

Debbi said...

wow. Watching (reading) you go through this brings it all back so vividly. I want to tell ya that a lot of people are praying with you that she gets bigger and stronger quickly and comes home soon!

Keep it up, Melanie. This will be but a small moment.

hugs.

Anonymous said...

My prayers and thoughts are with you and your family at this hard time. I can't wait to see pictures :)

oleyfriends said...

Hello!

I found your blog and wondered if you had heard of the Oley Foundation yet.

We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at www.oley.org.

In particular you might be interested in the

• Tube Feeding Tips page
http://www.oley.org/tubetalks.html

• Meet Patients Section (try all three links)
http://www.oley.org/volunteers.html
http://www.oley.org/call.html
http://www.oley.org/forum.htm

• Tube Feeding Complication Chart
http://www.oley.org/charts/newHEN.pdf

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY