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!

Hi, Miss Smarty Pants!

I must admit, I am very biased. I think my kids are beautiful, wonderful, smart little people. Liviana, of course is no exception. She is, by my mommy standards...a genius.

Little Miss has started waving and saying "Hi". It is the cutest thing ever. She says Mama and has many other jibber jabber sayings that I'm sure are quite profound and meaningful. I am so proud of my little sweet pea. I need to try to get her on video waving and saying "Hi". I will make that my new goal for the week.

I have always noticed how incredibly observant Liviana is. I wonder sometimes if her days laying in the isolette and crib at the hospital have made her skills of observation beyond those normally found in an infant. Maybe she learned how to maximize observation from because of being a passive observer in her previous environment. I realize how much she observes when I see her begin doing things she has watched Aria and Miles do. She sat for at least 10 minutes the other day trying her hardest to put Legos together. She was not just banging them on each other, she was turning them over, lining them up and trying to put them together. She also will put them, with success on the big Lego board, but has a harder time putting two blocks together.


Sunday, I heard her making her growling sounds and when I glanced at her, she had picked up the paw that goes with Miles tiger costume and was waving it around and growling at Miles. She has seen him with his costume on waving his hands, er paws, and growling and she was imitating him even though he had not had his costume on for several hours. So, stinking cute...and brilliant :).

She is pulling up everywhere and anywhere, beginning to cruise along furniture and this morning I caught her with one leg up on the bottom step trying her hardest to get the rest of the way up. She puts everything in her mouth and I will see her picking up something she shouldn't as it heads into her mouth I'll say, "Livianaaaa" and she will look at me, start chuckling and drop it. I wish everyone could see her adorable little face and smile.

Okay...enough of my bragging. I am just so proud of her. I am so struck each day by how "normal" she is. I never, at this time last year could have imagined more perfect, sweet, adorable, funny, precious, healthy little girl. We are so truly blessed.

She now has three teeth...the two on the bottom and one on top. She is still just exclusively breastfed. I have not started her on solids and she is doing great and growing well. I can tell she is getting taller. I think she is going to be a tall, skinny little girl, imagine that.

We have lots of snot going around the house right now. All of the kids have a lovely runny nose, a tell-tale sign that winter is approaching. Livi seems to have it the worst and I am hoping that she does not get pneumonia like the last time a little cold went around the house. She really did great last time so I'm optimistic we will get through this unscathed.

There is so much going on with Liviana's CDH pals. Carter made his appearance almost 2 weeks ago in Blue Devil/Tarheel land and is resting his lungs on ECMO and charming everyone with his rockstar hairstyle. Little Nayeli is expected to make her debut today or tomorrow and Sydney is not far behind. Little Ava Helmick reherniated and has had an extremely difficult time post-surgery. Please keep her mom Terri and Ava in your thoughts and prayers. I have added a link to their blog at the right. We also had lunch and an extended afternoon with Angle Elli's mom last week. It was wonderful to meet her and I can see what an amazing mother she is and how lucky Elli is to have her.

More to come soon.....

Amy

Changing of Seasons and Memories

Fall is in the air. Upon the first glimmer of fall about four weeks ago I found myself feeling very emotional. The change in the air, the sound of leaves, the smell of fall, all brought me straight back to this time of year last year. We are coming up on one year since we got Liviana's diagnosis (October 12) and I never would have thought it would have impacted me as it has.

It is amazing to me how something so simple as a season change can force so many emotions and memories to the surface. I could not escape it. I found myself right back in Wichita, first getting our CDH diagnosis, crying all the time, fearing for the life of our daughter at every minute of every day, not knowing where she would be cared for, not knowing how we were financially going to handle all of it, not knowing what the future held for our family that was to become 5. Would we still become 5 or remain 4 with only memories of Liviana? I remembered Rainbow House and our appointments in Omaha, trying to find a home, trying to stay positive for Miles and Aria despite my overwhelming fears and anxiety. I had a friend recently ask about Halloween and what the kids did last year. I had to stop and think for a minute before remembering that Halloween was spent in Rainbow House while we looked for a place to live.

It really took me several days to fight against the constant memory of last year. As the days have gone on and the season gets more and more evident I have been distracted from the negative emotions by Liviana's smile, her laugh, her keen observation of her environment, her crawling (that started this past Saturday) and her growing butterball belly. Liviana co-sleeps with us and I am replacing those memories from last year with the memory of her sweet little hand on my arm at night as she snuggles close. I am focused on this amazing little girl who has no idea the powerful impact her short life has had on us.

Next year at this time I may still be taken back to those challenging and emotional days, and that is fine. I know however that new memories will be created this year, of her crawling, her growing, her overwhelming desire to eat the grass outside when she is in the yard. I will never forget the challenging times but I am so amazingly grateful and blessed that we are able to create new memories that are so joyful each and every day.