Pictures

Here are a few pictures of Miss Rylie Roo.

Update

Drew is doing great!
She is still hoarse and is coughing alot but other than that everything is fine.
She is starting to eat more out of her bottle and now eats 1 whole jar of babyfood at a sitting. She is now up to 12 pounds 8 ounces. She was at 11 pounds 13 ounces when she was discharged a couple weeks ago.

2 OUNCES!!!!

She drank 2 ounces yesterday!!!!!! That is the most she has ever drank. I sure hope she keeps it up.
She is doing great with her baby food too. She is up to half the jar.
Keep up the great work Drew!

Had her first bite of food

She did not care for it too much. She refuses to eat the rice cereal so we went straight to veggies. She LOVES peas. Still not doing good with the bottle though. I am hoping that after eating for a bit that she will realize it is okay.

WE ARE HOME!

They released us around 2 pm yesterday.
Rylie was so extremely excited when we walked in to get her and then she saw Drew and could barely contain herself.
Once again thank you all for the support!

Finally!

After 3 long weeks.
They are releasing Drew tomorrow! The doctor came in today and took out her last iv line and her stitches. She is back to her self and sleeping great at night.
Rylie is also so ready for us to come home. Every night when we talk to her on the phone she asks if we are coming to bring her home “tomorrow”. We are so ready to get to something more normal.
Drew’s next surgery will not be for at least 3 more months, not very long. They will just keep an eye on her till then and decide whether or not she needs the last surgery at that time.
A big THANKS to all of you who have followed us down this road with Drew. Your prayers and support mean the world to us.

Trying again

Drew's doctor came in today and said they will try to send us up to the PEDS floor tomorrow morning. So please pray she stays healthy. We may possibly go home Sunday or Monday!!
Drew is doing great and ALL smiles all day long. They took out her oxygen cannula and that made her so happy, she was a whole different child compared to the past week.

Please keep us in your prayers. Thank you!

Heart Cath Images

Thursday

We will not be going to the peds floors today. Yesterday the general surgeon changed out her feeding tube in her stomach to a different tube. She had a little bleeding on the outside of her stomach early in the day. The rest of the day she seemed kind of restless and at 6 pm she threw up about a liter of old blood. It was just pooling in her stomach till she finally couldn’t stand it anymore. She is fine now and shortly after the whole episode she was smiling and feeling MUCH better. That just pushed our stay a while longer b/c they had to stop her feeds. We are just ready to be home.

Tuesday Update

We were able to hold Drew this morning. The Doctor informed us that we would be going to the PEDS floor with Drew on Thursday. Hopefully we will be able to go home early next week.

Her X-ray’s have been clear and she has been holding her feeds well.

Sunday Update

Drew was intubated again on Thursday night; she was having a problem clearing the fluid in her lungs. Her tube is being pulled out this morning.

Edited to say-
They extubated her this morning and she is doing great. They put her back on oxygen and she is not happy about it. They did another xray at 4 pm today and it was still clear. It has to stay clear for quite a few days before they will take anymore steps forward.

Her breathingtube is out!!!!

They took her breathing tube out yesterday morning. I would have updated sooner but Drew has been keeping us very busy. They had to put a cannula in her nose to give her oxygen so she is not thrilled in the least to still have something on her face. She has been super fussy these last few days. We are still not able to hold her b/c of some of her iv lines and she is to young to understand why. Hopefully in the next few days we can hold her. They finally also started feeding her today.
Steve and I had a talk with her doctor last night and he said we may go home as soon as this coming Monday. We were shocked that we may go home sooner than we thought.
Besides the fussiness she is doing GREAT!!!!