Teeth!

Little Miss has two teeth poking through on her bottom gum. She spends a lot of her day trying to find things to shove in her mouth and chew. I will *try* to get a picture of these new little pearly additions but I can't make any promises.

Liviana and I have a lot of conversations. She seems to have so much to say, and sometimes with such seriousness. She also expresses her displeasure quite well. She adores her brother and sister but sometimes they crowd her a little too much and she is quite clear about wanting her space. It is actually funny to hear her and see these outbursts of displeasure...It try not to laugh.

We had a few visitors a couple of weeks ago. My mom was here for a few days for her birthday and Brad's sister and nephew were here for almost a week also. We loved the company and they all of course saw the sweetness that is Liviana. It has been SO hot and humid here and we have not been outside as much as we would like. We met friends at the Splash Park last week and Aria and Miles had a blast. I took Liviana over to get sprinkled a little but that was all of splashing for her. She did look awful cute in her swimsuit.

Liviana is making moves to crawl but most of the time she goes backward instead of forward. She has this awkward side crawl, kind like a breath stroke in swimming. She lays on her shoulder and puts her little tush in the air and pushes forward. I have not doubt she will get the legs and arms working together soon though and be all over the place.

Enjoy the pictures. We seem to like polka dots around here. She is showing off a couple of her cloth diapers and covers. She likes cloth on her tushy :). The picture in the polka dotted dress if from my mom's birthay (Nonna).

Happy 6 Months and Spine Obsession

Can you believe Liviana is 6 Months old? She has developed so much in just the last week or so. She grabs at anything and everything in her sight. She is so interactive....she is coming such a little person. She is SO happy and anyone who has the joy/privilege/luck to be around her will be touched by her.

She continues to make strides towards crawling. She has crawled backwards a couple of times (well scooted really). She uses her arms to move from side to side but has not quite gotten the hang of going forward yet. She actually lets out this really sad, pathetic little whine when there is something out of her reach. I try to help her along with moral support but I eventually move the object closer because she persuades me with her high pitched whimper and big blue eyes.

Liviana has graduated to sink baths. I don't usually get to see her sitting around with no clothes on so I had not noticed the shape of her spine/back while sitting. We of course knew that spinal issues were a real possibility because of her hemivertebrae but I had hoped that she would have an equal number on each side and they would cancel each other out.

In her bath the other night I was struck by the appearance of her back. The left side almost looked sunken in while the right protruded a little. Even when she changed positions it still looked uneven. Later, when I was looking at her again it almost seems like the shoulder blades on each side are no where near lined up. the left is lower and further to center while the right is higher and further to the right. Now, Livi did/does have the torticollis issue although it is MUCH improved. At first I thought it could be from one side being more developed than the other. The issues on her back however are opposite of what I would expect if that were the case.

She has her 6 month appointment tomorrow morning (yes, we have an awesome doc who sees patients on Saturdays). I will talk to her about it of course. She also has her follow up with the Orthopedic Surgeon, Dr. G. in September. I'm sure we will just wait until then because there is nothing they can do about it now, if she is developing curvature.

I have attached a photo of her back. I know you really probably can't see what I see but it is worth a shot. Incidentally, those little marks (dark spots on the left side, there are four total) are her surgery scars since it was done laproscopically. She is so amazingly lucky to have been in the hands of the surgeons here at Children's.

Sweet Baby Seth

Sweet, strong Seth has lost the fight against CDH around 1:15am, July 16, 2008. Please pray for his family. This is their second loss.

I realized I had a bad link for his page but I have corrected it now.

Personality Plus!

Make an on-line slideshow at www.OneTrueMedia.com

Wow! This little girl is developing quite the little personality. As you can see she had her first taste of solid food last night, organic oatmeal. I had intended to wait well past 6 months as she was growing well being exclusively breastfed and I did not want to push her little digestive system too much. She however, did not want to wait. She kept grabbing at my food with a death grip and pulling it to her mouth. She could hardly control her excitement when she would see food on a plate. As you can see, she is thrilled! Aria and Miles, while loving their food, never grabbed the spoon like that, let alone the very first time they ate.

She is sitting up although she seems to want to stand more and will stiffen her legs so I will hold her up to standing position. She is SO strong. She also has started rolling all over the room. It is amazing the floor space she can cover in a short period of time. She is so thrilled each time she rolls and gets a new perspective on things. She also loves hair....playing with it, pulling it and eating it. I think it is because she does not have much of her own :). She has definitely gotten to the point of expressing her dislike also. She lets out a little ornery scream when she wants to be picked up or is unhappy for some other reason. These screams are sometimes hard to distinguish from her happy screams though which often leave me running over only to find a laughing, smiling little babe.

She is such an absolute joy! I am loving seeing her grow and develop. I think that even though she will never remember those first 30 days they have indeed shaped her personality as a strong, roll-with-the-punches, feisty little girl.

More later.....

Look Ma! I can sit all by myself!

I can't believe how fast she is growing and what a strong, amazing little girl she is!

Appointment with Geneticist

We had Livi's follow up today with the Geneticist, Dr. O. who saw her in NICU. To review, Liviana had a Congenital Diaphragmatic Hernia, Multiple Hemivertebrae in the thoracic and cervical spine, a missing rib and a Ventricular Septal Defect. Because of the combination of anomalies they automatically check to see if there is an underlying genetic or chromosomal component.

The appointment was very thorough. We went through our family histories and any issues or concerns with us, Aria and Miles and our extended families. The issue of Brad's height and Mitral Valve Prolapse came up and Dr. O. did a very crude test (physical exam) to rule out Marfans. He got the all clear, which we were already pretty confident was not an issue.

Based on the very comprehensive testing with blood drawn in NICU she does not appear to have a "syndrome" that they have the ability to identify. She said initially, with her combination of issues they wanted to check her for Fryn's Syndrome and that has been completely ruled out. She said if Livi had Fryn's she would not be the normal looking, smiling child today. She said there is the label of VATER which is a combination of vertebrae and other anomalies which do not fall into any other condition or syndrome. Basically, at this point they don't know why or how these anomalies developed and at this point they cannot identify one syndrome or genetic disorder for all of it, based upon genetic testing and seeing her in person.

The relevance of all of this is whether we need be concerned about future issues showing up and whether this is was caused by a genetic or chromosomal component that will be relevant to other potential future children or grandchildren.

She wants to see her again in 2 years. She said if she ends up having other issues appear we would likely see them between now and then.

Liviana weighed 14lbs. 7oz. which is up from 13lbs. 10oz. one week ago. The difference in scale could account for such a large increase. She typically gains an ounce a day so that would be a HUGE gain in one week. Our ped's office uses a digital scale and they used a manual scale today. So, she is around the 50th percentile which is so awesome for her condition (she burns so many more calories with her breathing) and all she went through in the first month of life.

So, all in all the appointment was great. They think she is beautiful and amazing and we completely agree.

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