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!

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.

Merry Christmas and Happy Holidays

I hope everyone had a wonderful Christmas with family, friends, food and fun. My house is a complete disaster but my heart is full of love and happiness.

Liviana is doing so well. She likes to stand by herself but accept for one, random time, she is not taking any steps without holding onto something. In her own time. She has quite the sense of humor and loves the baby doll that her Nonna got her for Christmas. She loves going over and turning up the volume on the TV stereo and laughing hysterically. I think I'm going to have my hands full with this little one.

Brad has another appointment on the 30th which they are calling a "surgery consult". They are wanting to remove the upper left lobe of his lung. I was unable to go to the first appointment so I will be in attendance and will be asking many questions this time. I will keep you all posted. How ironic that lung issues challenge us in Liviana and Brad at the same time of year, two years in a row.

All CDH babies, especially those special angels are on my mind this holiday. Their strength inspires me each day.

Cramming it all into one post

I'm a little slow getting to our Thanksgiving post and Livi's appointment this week. I think I needed to rest from the week of cooking, eating, birthday party and guests. Thanksgiving was great. My brother and his wife and my mother joined us for the Holiday. I think I am a gourmet chef so I spent quite a bit of time on menu planning. We went non-traditional but still really good and memorable.



Aria's 4th Birthday was the 25th and we celebrated on the 28th, the day after Thanksgiving. I still can't believe she is 4 years old. That seems like such a milestone to me. She's not a toddler anymore. Where is the time going? She had so much fun. She had been talking about her birthday since Miles's birthday in September. I'm still trying to figure out how to balance Liviana's blog with our family blog but I have thrown in some birthday party pictures also. Liviana is wearing a dress I bought for Aria when she was livi's age and never got to wear. It fit perfectly with our pink and brown theme.



Liviana had an appointment on Monday. It was a delayed appointment (or early, however you look at it) because her pediatrician was on maternity leave (her 6th child!). At 10.5 months she weighed 18.5lbs. and is 28inches long. She is a petite looking little lady but doing so well. She was around 40% on her weight and 50% on her height. She thought she looked great and was very impressed that she kept waving "Hi", is standing by herself, has amazing fine motor skills (she puts caps on water bottles and puts legos together) and is so perfectly "normal". She will have her next appointment around her 1st birthday which is right around the corner.



Brad has his repeat CT Scan early tomorrow morning. They rescheduled his appointment at the lung cancer clinic for the 18th which means he would have to wait that long to get the results. We have "connections" though and we will be getting the results Friday at the latest. I'm worried if they still show the mass on the lung that the holiday will cause a delay in a biopsy being done. I am certainly going to push for everything to be done quickly. We really can't keep waiting with so many questions.



I really cannot believe that it is a year later and Liviana is almost a year old. I remember this time last year like it was yesterday. I swear the kids watched Rudolph the Red Nosed Reindeer just yesterday, I swear I was big as a house and consumed with fear for Liviana's future. I swear I just gave birth to her yesterday and watched as she was intubated and taken to NICU. This has been the fastest year of my life and one filled with so much joy and love. We have grown so much this year and despite the stress and challenges brought to us we are better for all of it. We can be thankful for all we have and then some.



There are other CDH babies celebrating their 1st birthdays now also. I remember their arrivals and am so thrilled to see how far they have come. Emerson turned 1 today and Cadenne turns 1 on Saturday. Happy Birthday little ladies! You have added much to the world and many gray hairs to your parent's heads.

I will update after we get Brad's CT results. Please hope for positive results. I hope everyone is doing well, staying warm and staying loved.

Brad is home...without answers.

Brad was released this afternoon. We don't know any more information but he is not in as much pain right now and that is huge progress.

The diagnosis is being left at one of two things; One, is lung cancer and two is something obscure that infected his lungs, likely through work. It is not pneumonia. The infections disease doctor was in and had such a perplexed look on his face. Brad is only 32 so they certainly don't expect to see a tumor like this at his age.

He is home on an antibiotic (a pricey one at that), steroid and inhaler. He has a regular family doc appointment on the 20th and a CT Scan and Lung Cancer Clinic appointment on the 4th of December. They told us not to freak out about the Lung Cancer Clinic that they see people with other obscure lung problems but I really can't help but not.

He lost a pound again and is back to 179 lbs. (He is 6'9 for those who did not know) so my goal is to fatten him up and keep him from thinking he can run off to work right away.. His mother arrived last night and I did not warn her about his appearance and I think she was a little startled last night when she saw how thin he was in the hospital.

He is still on a nicotine patch and said he doesn't have a desire to smoke. This has definitely gotten his attention on many levels.

I meant to ask for a copy of his x-ray or CT Scan and forgot. The best I have is a drawing a doctor put on the dry erase board. The large blacks spots in the upper lobes are the areas in question and there are smaller spots of it below as well.

He did not have doctors orders to not work so he is out checking in on a couple of jobs right now. Unbelievable! I don't know how I am going to get him to relax.

Thanks again everyone for your support. We are not out of the woods but I am SO glad to have him home. Miles's reaction of joy was priceless. The kids missed him so much.

Liviana's Daddy In Hospital

I wanted to post a quick message letting everyone know that Brad is in the hospital. I won't go through all of the details but he had been having strong chest pain and back pain as well as other miscellaneous problems. A CT Scan has revealed a little pneumonia in his left lung as well as a 3.2cm mass in his upper left lobe. They have not done a Brochoscopy or Biopsy yet to determine what the mass is yet. I suspect that will be tomorrow (they are waiting to see if antibiotics improves the area. He is also currently under TB isolation at the hospital because the mass was unknown and they could not rule out Tuberculosis. I don't think he has TB but they are following protocol by imprisoning him in a small insulated room which has him not a happy camper.

I am exhausted and emotionally spent. He is at Methodist hospital where Liviana was born and she "kind of" was in the hospital (since the Children's NICU is on the Methodist Hospital side). It is surreal being back there worrying about the mortality of a loved one. My greatest fear is obviously lung cancer since Brad smokes. Don't worry, I have mentally Bi***** him out several times. I will move to verbally when he is feeling better :).

Please keep him and the kids in your thoughts. They miss their daddy so much and I know he hates not being able to see them also.

I will keep everyone updated.

Not So Scary Tiger

This Halloween was the first time the kids have dressed up and experienced the joy of going door-to-door and having perfect strangers toss candy into their bucket. Liviana was a little tiger, as was Miles. Aria was adamant about being a princess, a fairy princess. Here are a few pictures. First from our trip Thursday night to the Children's Museum trick-or-treat night, complete with snacks from Whole Foods and next from trick-or-treating last night. Our littlest tiger was asleep half way into our walk around the neighborhood. I will have more Halloween details today on our other blog.



Liviana is such a keen observer that she hardly made a peep while at the Children's Museum until we got away from the crowds. I kept trying to get pictures of her and she seemed to distracted with watching everything going on around her. I got these half grimace smiles from her while she looked around.



Livi was also very upset when I tried to put her little paw gloves on her hands. She does NOT like her hands messed with so we scrapped the paws, making the little tiger less scary of course.



Enjoy the pictures. The kids sure did have fun!