Saturday, January 17, 2009

Happy 1st Birthday Liviana!

In honor of Liviana's 1st Birthday I have written her a letter and made a tribute video for her. Make sure you have your sound on. Enjoy!

My Dear Liviana,
I can't believe it has been a year already. I swear it was just yesterday that I was planning for your arrival with a combination of joy and fear. So small, yet so strong, describes you perfectly. You took CDH on head first and never looked back.

I prepared for every possibility with you. I researched anything and everything related to CDH so we would be prepared for the worse, yet hope for the best. I never anticipated you would kick CDH as hard and swift as you did. Not only did you beat CDH but you surprised us with heart and spinal issues that barely phased you and still don't today.

When I look in your eyes I see someone who already has learned an important life lesson...the lesson that life is too short, anything can happen, live each day as if it were your last. With your smile, your daily joy and your amazing interest in everything around you I feel as though you already know what you have been through. You already know that it could have easily been different and you could be an angel above with all the other CDH angels. I feel as though the CDH angels who have gone before and after you are with you, cheering you on each day.

I thank you for so much Liviana. I thank you for inspiring me. I thank you for challenging me. I thank you for making me smile in an instant. I thank you for bringing joy to your brother and sister's lives. I thank you for tucking your sweet hand under my chin each night as you sleep. I thank you for your loving gaze up at me as you nurse. I thank you for the peace you seem to exude. I thank you for teaching me about facing fears and being strong. I thank you for the hugs and cuddles. I thank you for teaching me about CDH and giving me hope that together we can fight it. I thank you for being such a fighter. I thank you for your spirit. I thank you for your sense of humor. I thank you for your feistiness. I thank you for being in our lives each and every day. I can't imagine a single moment without you.

Happy Birthday sweet girl. You made it here with strength, grace and perseverance. I look forward to what you will continue to teach me and bring to our family for all your years to come.

Friday, January 9, 2009

Brad's Surgery Update

I decided to just post his update here for ease and simplicity.

Good news first...no apparent cancer in the initial frozen sample. They also ended up NOT doing an entire lobectomy and just removed the part that was infected. The doctor said he had several areas called "Blebs" in the upper left lobe. He also had an apparent unknown infection, inflammation and his lungs were stuck to his ribs. He had to separate his lungs from his ribs and removed the area that had all the issues. No wonder he has been in so much pain.

I did not get to see him before I had to leave. I left his bag for him and will probably get up there first thing in the morning with the kids. This is such good news. The doctor kept reiterating that he did not know if this would take away his pain. He said he is not about removing his pain. I have to think it will though, even if the doctor is not in the business of pain removal.

We will need to await toxicology to find out the unknown infection. It must be something obscure since tests already done have come back negative. I am betting on something fungal but we will see.

Ironically when I did a search on Blebs I found that it is sometimes linked to Congenital Diaphragmatic Hernias. They can cause a collapse of the lung. Brad and Liviana now share incisions from surgery in the same place. I always knew they had a special bond :).

He will probably be in the hospital for 2 days. They said he can go home once his chest tube comes out.

Thanks everyone for your support! It means the world to us! I am doing a Happy Dance tonight!

Monday, January 5, 2009

Sour Apple!






Do you see that ticker...the one above this post that says how old Liviana is? Is that right? It can't be right. I really cannot believe she is almost 1. I swear I was pregnant with her just yesterday, sitting by her isolette in the NICU just yesterday and bringing her home, just yesterday. This has been the fastest, most fearful and most joyous year of our lives.

Liviana amazes me every single day. She is getting so big and active. She is so smart and still such a keen observer. I can' really tell she is growing. On our scale at home she is 19.5lbs. She really doesn't look it at all. She is a petite little lady. When people see her walking in public they are going to freak out and think she is a 6 month old. About that walking...she takes steps here and there like a pro but she has not made the decision to go bipedal full time yet. I'm in no hurry, as it will add to my daily challenges but I'm sure she will be there before her 1st birthday.

I'm working on a video and post in honor of her 1st birthday. It is an emotional and rewarding endeavor and I hope you will all enjoy it upon completion.

A quick update on Brad's situation. He is having surgery this Friday, January 9th. They will be removing the upper left lobe of his lung. He is expected to be in the hospital for about 3 days. They said that once his chest tube comes out he can go home assuming all is well, which is usually 2-3 days. I am hoping the doctor's surgical skills are better than his bedside manner, which left something to be desired. I'm going into this positive even though I can't help but be worried about he process. This is almost 1 year from when Liviana had her repair surgery that directly impacted her lung function. Brad will also be having his done laproscopically just like Liviana, in the same place, with the same incisions. What irony! If he has too much scar tissue they will have to do an open surgery which I really hope does not happen.

Keep him in your thoughts and prayers please as well as the kids who have a hard time when Daddy is not around (especially little Miles).

I will likely move the update on surgery over to our other blog but I will post the notice and link here on Liviana's blog for all who want to follow.