Libby Update

Wow..it has been two years ago last week that Libby had her big open heart surgery in Houston. She had set backs and actually got a terrible Staph infection in her surgery wound!!! Those were some scary times for sure. She spent 9 weeks in Houston at the hospital fighting for her life. She has done remarkable and I am sure that you have noticed over the course of my blog that she is an active, happy, little-just-turned-five-year-old girl! She and Reagan are the best of friends and enjoy pretending and play dates together. Libby calls Reagan "Sissy" which I think is adorable! Libby learned to swim this summer and was as brown as a Mexican from all of her time out of doors. She has had so much more energy since her Fontan surgery and has honestly been the healthiest of all of the children (there are 7 between our 2 families!!!) Many of you that read our blog and keep up with us often ask me about Libby and some of you have actually met her! Well, I wanted to give you and update on her from her latest Houston visit with her specialists. I was going to paraphrase Gracie's post from Libby's carepage, but I decided to just copy and paste as to not leave out any of the details. My heart is heavy...pregnancy hormones and bad sleep don't help that, but there is so much that I want for this little girl. She is special...special in so many ways! Pray for her as she comes to mind (the Flu is ALL around us right now). Pray for the family, too. Pray for me as I walk this path with them and come along side them to be the kind of friend that God calls us to be.

Here is the Carepage Post written by her Mom, Gracie.
An update from Houston
Posted Oct 7, 2009 9:44pm

Hello Carepage friends and family!

Eric, Libby and I traveled to Houston for a check up with Libby's infectious disease(ID) doctor and cardiologist this last Monday. The ID doc felt like all was going well with her long term antibiotic for the MRSA chest infection she had 2 years ago, and has no interest in trying to stop it now. You may remember that we stopped it about a year ago, and Libby started having funny fevers and being fussy with no source. As soon as we restarted the Bactrim, she was fine. We have so far stayed healthy in this CRAZY flu season, and pray that that continues.

Our checkup with the cardiologist was not as favorable. Lib's heart valve is leaking more, which is what we have been concerned about. There just aren't many options for making things better. It has been operated on 3 times, and the last time Dr Fraser declared that he would not operate on it again. He had done all he can do. Dr Ayres (our cardiologist) feels that he might operate on it again if asked. The thought of another heart surgery is...honestly...sickening. For lots of reasons. A valve replacement is not an option due to her Fontan circulation. We briefly discussed heart transplant again. We are no where close to needing to think seriously about this, but if the valve continues to worsen and can't be operated on, it may be our only choice. Dr Ayres said again that Lib would likely need a heart/lung transplant, which is more complicated, has a longer wait, and a less favorable outcome. The average life expectancy after lung transplant is 3 years, and commonly those aren't even good years. SOOOOOO - we will continue to do what we have been doing and trust God with her life. It is miraculous - absolutely - that she is alive even now! She wasn't supposed to make it this far, and His plan is obviously different! I tell you what - it gives me a fresh appreciation for being thankful for each day we have. Her life is not "normal", but it is good. She is enjoying her new school and is learning a lot. Her energy level has been less, but Dr Ayres said that is to be expected and that she has several patients who can not go to all day school. We certainly hope that that is not the case for Libby as she starts kindergarten next year. But - we will cross that bridge when we get there.

While we feel great sadness at the thought of her not being with us, we are reminded that God has greater things in store for her, and that we will get to spend eternity with her. We would not trade the pain we have felt for the joy we have experienced through her life. We pray for God's will in our lives, and that we can have peace and joy. I heard a song recently by my favorite group, Selah. It is written for one of the singer's 4th daughter who lived only a few hours after birth (which they knew ahead of time) due to many congenital anomalies. It is called "I Will Carry You". It has really ministered to me, so look it up if you get a chance. It is amazing!

Oh - on a lighter note - she is completely potty trained. MAJOR victory!! Not much progress on the eating front, but that is next!

Thank you for loving us, walking this journey with us, and praying for us. This road would be much harder alone.

Love, Gracie