Claire has had a little better day today. Her day nurse switched her replogle to her nose and she rested much better today. It's still uncomfortable for her, but she is not gagging on the tube. The C. Diff test results came back today and were negative, so Claire has moved to a regular room and is no longer on contact isolation. She is still not feeding yet though. She will have another abdomen xray at 4 am to see if there is any difference from the one they did at 4 am this morning. That one showed improvement, so we are hoping the next one will too.
I am hoping to be able to head home tomorrow for the weekend. Claire will be in good hands this weekend with her nurses and family watching after her.
We are so thankful to everyone who is helping with the ham dinner tomorrow. We know that it takes a lot of time and sacrifice to make something like this event happen and be successful. All of the planning and hard work is greatly appreciated by so many. We will probably never know everyone who has done something for the dinner or everyone who has purchased a plate or donated something. But please know that whoever you are, you will always be appreciated. And we cannot wait until Claire can hear the stories of how so many people cared about her that they did all of these things for her - a sweet little baby girl from Jones County.
These past 6 weeks have been a journey. Never in our wildest dreams did we think we would be experiencing all of this. But we are so thankful for the wonderful gift God has given us and entrusted to us. She is more beautiful every day and the best blessing we have ever received. You just don't understand what life is like for an ICU baby and his or her family until you experience it. Not having control of when you can hold your baby and for how long, having to call throughout the night and day to check on her progress, worrying from afar about her, being pregnant and giving birth and not being able to leave the hospital with your child, decorating her nursery knowing it could be months before she's able to be tucked in her own crib, not knowing what it's like to hold your child without about 10 tubes and wires attached to her that get tangled every time you hold her, seeing your child's face for a few hours without any tubes attached seems strange, trusting nurses and doctors that you have never met with your child's life every day when you leave her at the hospital, having your child be 5 weeks old and never have given her a bath, having to check in at a reception desk and ask permission to see your child, having to wash your hands 5 million times a day and wear a hospital gown to even be able to see your daughter, living in a place where you hardly know anyone and have to use a GPS to find anything, having your child experience illnesses and pain that even you have never dealt with, and the three of you not being able to be together as a family other than in a hospital room with lots of other people. These things will soon be a distant memory but will have changed our lives forever. Thank you, God, for Claire and for our friends and family!!!! We are so incredibly blessed. Claire is the best thing that has ever happened in our lives and is worth every minute we spend away from home and every dollar we will spend at Duke. We are so appreciative for the awesome doctors and nurses who love Claire as if she was their own child. We just cannot express how much in love we are with our sweet baby girl.
Now that I have written the longest blog post in history, I am headed to get more things done and to call and check on Claire Bear. We hope to see you at the ham dinner tomorrow! Please be sure to thank the cooks, delivery drivers, or anyone you see that has helped to organize this benefit for Claire. And enjoy the wonderful food!!!!!
The Scott Family