Sunday, June 15, 2008

Much delayed update






Hello everyone! Let me first apologize for the delay in update. Liviana is doing well. She still has a tiny bit of fluid in the upper part of her left lung but it is much better. You would barely have known she was sick. She never stopped smiling and laughing. We have had two follow up x-rays and doc visits to stay on top of things. This last Friday I took her in because I was worried about how much she was moving her upper body just to breath. She fell asleep on me in the office and was breathing the same way, with a lot of upper body movement so we checked her oxygen saturations and it was 98. Honestly, she may have always had that movement with breathing and I am just so much more focused on it because of the pneumonia. She weighed 13lbs. 7oz. at her appt. last Friday and was 13lbs. 10oz. this Friday. She has been gaining 1oz. a day for a couple of months now but only had 3oz. for all of last week. The doctor said that they typically slow down a little right now but we will keep an eye on the weight just in case. We will be back at her Ped next week to xray and check her pneumonia again. She also has a follow up on Friday with the Geneticist from UNMC who saw her in the NICU. I honestly am not sure what this appointment will entail but I am looking forward to speaking with them further about her Hemivertebrae, CDH, VDS and missing rib combination.

We have had a bit of transition that she too (and Aria and Miles) has handled just fine. We ended up in between house closings and found ourselves with a 3 week period of time with no home. We got lucky and were able to rent a home for 3 weeks that was available for the College World Series and Olympic swim trials. The kids are enjoying the "vacation house" as we are calling it because it is right next to a park so they get lots of outdoor playtime everyday. Liviana loves tagging along in the sling or the stroller and watching Miles and Aria play. We were a little concerned about the age of the home (1857) and dampness in the basement as it relates to Liviana's breathing. The doc said it could bother her a little and to just give her breathing treatments as needed. So far, so good. We move into our new home on June 30th and we can't wait to get settled.

We have been lucky that the Suburb we are in right now is having their annual fair called Papillion Days right next to our home. The past two evenings we have taken the kids down to ride the merry-go-round, eat and people watch. Liviana has spent the time in the sling kicking her legs and smiling at those who pass by. Every single person who has said something to her or about her has called her "Fella", "Handsome", or "Little Guy". Hmmm, on the first night she had on a pink dress with cherries. I'm not quite sure how you could think she looks like a boy but she enjoyed the attention nonetheless.

I surprisingly found myself a little emotional this past couple of weeks with our move. I think it was a combination of moving from the home we brought Liviana home to and hearing from some new moms expecting their CDH babes soon. I honestly have never stopped and taken the time to think about how this entire experience has impacted me. I think that is good, in that I have been able to continually focus on the here and now but it can have the downside of catching me off guard with these emotions. As I packed up our room I remembered the nights laying in bed during my pregnancy thinking about her arrival, how would she do and whether she would overcome her CDH. I packed up her pictures from NICU and the little signs the nurses made for her. I folded blankets that were in her isolette and put her little butterfly ornament sent to me from a CDH mom in her keepsake box. Liviana will never remember these times and as time goes on the clarity of the memories will fade a little for me too. However, it takes such a small moment, a blanket, a message from another mother or a photo to make all of those emotions of fear, joy and the unknown come flooding back.

I have posted some new links to the side for some new CDH babes who will soon make their grand entrance into the world or already have. Kinley is in Kansas City and was born on May 25th. Carter (NC) and Baby Girl Reed (KC) are soon to grace us with their presence. Please visit their pages and send them your well wishes. They are going through a time mixed with joy and fear that I wish no mother or father had to endure. I welcome any CDH parents, past, present and future to contact me.

Enjoy the pictures!
Amy

2 comments:

Fer said...

Amy, I'm glad Livianna is doing better and I wish you good luck with the moving.

Dear6993 said...

Amy,

I wanted to thank you for all your information and links for CDH. I am Kinley's Great Aunt in Minnesota, and this has been such a wild ride for our family. The information has been very helpful, as has reading through Livianna's stages she has gone through. Your children are absolutely beautiful, and I will continue our prayers for all of you.

Thank you for keeping Kinley and her family in your prayers...you are one of the few that know exactly what Kevin and Kathy are facing. God bless you!

Karen Dear, Minnesota