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Wednesday, July 28, 2010

St. Louis Day 7

This post was sent in by Nicole Parris.

St. Louis Children's Hospital has done a wonderful job in making us feel at home. There are several retreats throughout the hospital that allow us to get away without actually leaving the hospital. On the same floor as the NICU there is a Ronald McDonald Room; we can do laundry, watch TV, play games with Tanner or visit with other families over a cup of tea. In many ways we already feel settled even though our future residence is still unknown (we are on the list for the Ronald McDonald house but the list is long). On the 8th floor there is an outside area to get some sun and take in the view of the city. Since most of our time is spent indoors, this is a place I visit often to help catch my breath.

The flight was bumpy for Wrenn but the doctors at the NICU did wonders getting her stable those first 48 hours. I was unsure about how she'd do on the trip and say what could have been a real goodbye back in Orlando. I think it will take a lot more than that to knock down my little firecracker. She is still fighting hard and is making us proud at how well she has transitioned to her new home.

As our roller coaster ride continues, I am thankful that we are surrounded by such wonderful nurses and doctors here in St. Louis. They have already learned that Wrenn is feisty, which I am told is a good thing if you are in need of a transplant. I'm sure the nurses will be experts on Wrenn's personality very soon! :-)

Wrenn was switched back to the ventilator this morning and is stable. She is still on minimal sedation but continues to open her eyes and memorize new faces and voices. She listens to her CD's, some familiar (like the one Aunt Carol gave her back in Orlando) and some new (a CD from Jaimie; a nurse we had the first few days Wrenn arrived). :-)

If possible, I hope to hold Wrenn in the next few days. I am cautious and don't want to do anything that will upset her. I rely on the nurses to advise me on this when the time is right.

Tanner is enjoying his time in the sibling daycare room and visiting his sister's new private room. One of our new friends, Liz and Dan, based here in St. Louis, brought Tanner some books and toys to our hotel. I cannot thank them enough for taking the time to do this. You guys are awesome. :) HUGS

Wrenn received your cards and letters this week. As usual, the prayers and kind words always come at my darkest moments. Please keep praying for her lungs to heal, answers to come our way, and of course, the perfect set of lungs, should that be her path.

Jason and I feel the love and support from everyone involved and we thank you for carrying us through this difficult road. I will update as you as time permits. :-) I want to again thank Lisa M. and Nicole N. for everything they have done for our family and this blog. ((((HUGS))))


LisaH on July 28, 2010 at 11:18 PM said...

Nikki, I'm glad to hear that things are going as well as they can be for Wrenn right now and I hope that you are able to hold her again soon.

Just_Jennie on July 29, 2010 at 12:19 AM said...

I am just in tears. I am so happy that Wrenn is doing so well... Continued prayers! (((HUGS))) to all of you!

Anonymous said...

We miss her back in orlando and the nurses speak of her often. i am glad u and ur family is adjusting well to the change. i will continue to keep her in my prayers. Love april c. rn

Anonymous said...

You are amazing that you can write such great prose to keep us up to date on what is going on. It will be a journal you can treasure when Wrenn is home and doing well! Ronald McDonald better find you a room! What a wonderful, caring place you are in! Hope you can hold her soon and that will help both of you. Tanner is amazing! They are at that age.......Andrew was like that with my dad and then my mom! Love and hugs to all, Sandy

sophanne on July 31, 2010 at 9:06 PM said...

So glad to hear she travelled well. Hang in there!


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