Good News

Liviana does not have an intestinal blockage. After 3 hours and multiple x-rays they do not see any areas of concern in her small or large intestine. They did not see reflux either (as far as I know, the "official" report had not been reviewed yet when Dr. C called me). I am SO relieved.

The process was much longer than I expected. Liviana did great. When I saw the barium in a bottle I was worried she would not take it well since she has NEVER had a bottle before, not even in NICU. She was so hungry from not eating for 4 hours, she did not have any problem at all. After the first "flora" exam we went out and waited and repeated the process every 30 minutes until the barium had moved past her small bowel, which took much longer than expected. Everyone oood and ahhhd over how cute and sweet she was. We had people stopping by the little area we were waiting in to see her. She enjoyed the attention and always gave a big smile for her admirers.

I was really surprised at my negative emotional and physical reaction to the hospital. The smell really hit me when I walked in and got off on the NICU floor to go across the skywalk. It brought everything back to me in an instant. The worry, the fear, the pump room, the bells and alarms, the driving back and forth. I could not get out of there fast enough today.

Despite the worry of the day it was a blessing in disguise. Having three little ones I don't get to spend much time one on one with any of them very often. Yesterday it was just Liviana and I, hanging out together in our little corner. After each exam she would either snuggle into me and go to sleep or she would sit on my lap and chew on her hands, looking up at me. I really, really enjoyed the 3 hours holding her, cuddling her and loving her. I could tell by her calm demeanor that she enjoyed it also. I think however I will have to find a way to share that same one on one time with her outside of the hospital though!

Thank you everyone for your concern, thoughts and prayers. She is doing great and has no plans for surgery again any time soon.

Update from Surgeon appt. this morning

I got a call first thing this morning from Dr. C's office wanting me to go in for x-rays again before our appointment. She had an abdominal, a chest and an upright chest (I had to hold her upright for 10 minutes before they took it). Her diaphragm and lungs still look great. He could see a little distension still in her bowels on the x-ray and has ordered an Upper GI-Small Bowel test for this afternoon. If it shows she is having a twisting in her bowel they will do surgery right away (later today or tomorrow). He also wants to look at her reflux since she has not been on meds for almost 2 months. He is optimistic that she won't need surgery and I am as well. He reiterated that she has malrotation by virtue of her CDH, it is the twisting that we want to keep an eye out for.

So, we head back today at 12:30 for the GI test. I can't feed her until after the test and she ate last at 8:30am. Oh, let's hope she stays sleeping until we go back or she will be one upset little girl.

Dr. C. also said he was planning on calling us anyway. I thought, why would our surgeon be calling us for no reason.....He said the hospital wants a family to do some radio spots and he thought we would be a good choice. He said he would give them our name and number. I think it would be great to have that chance since I could also spread the word about CDH at the same time. Maybe you will see Liviana on a billboard someday.

I will update after I get the results from the test today. Please keep us in your thoughts and prayers.

Abdominal X-ray Yesterday - Update #1 & #2

My mommy gut was telling me to have Liviana's bowels checked through x-ray. There was nothing major, she was not vomiting or having major signs of problems. She would start crying like she was in pain and usually 5-10 minutes later she would have a bowel movement. She seemed more uncomfortable in sitting position and she has just been fussier the last couple of days. Dr. Cusick stressed to me the possibility of her bowel twisting, especially because she had her surgery done laproscopically and does not have the benefit of scar tissue in the abdomen to keep things in place. I figured we were better safe than sorry.

I called her doctor's office (pediatrician) and they told me to take her to Children's to have the x-ray done. That was around 5pm yesterday. I have YET to hear back on the results. I have called my pediatrician's office twice and they said they have not gotten the results yet and have called a couple of times for them. I am a little frustrated and just called her surgeon's office to have them see if they can get the results. She has had enough x-rays for me to know it does not take that long for someone to read and report on them. The nurse said that Dr. C is in meeting and she will have him call me when he gets out. She did say that she heard someone call from radiology earlier and they were faxing over results from an x-ray yesterday on a D-hernia baby. That is likely her and it worries me that they were sending them to her surgeon's office since the order came from her pediatrician.

I will certainly let everyone know what I hear back from the doctor.

*****UPDATE*****
I still have not talked to the doctor but our pediatricians office spoke to our surgeons office and got the report. Her bowel is not showing a "major obstruction" but is showing some dilatation or widening. Dr. C is supposed to call and let me know what they want to do. Thinking about her having to have surgery again has me in tears. I'll update after I speak with him.

*****UPDATE #2*****
Dr. C called. His manner is so calm and reassuring. He saw the x-ray and the report and after asking me a million questions he said he is not overly concerned but he wants to see her tomorrow morning (He also gave me the option of taking her to the ER tonight). He said that dilatations can be seen one day and not the other. I will update everyone tomorrow. I truly cannot imagine having to send my little girl into surgery again and see her intubated again. I hope this is nothing serious. Keep her in your thoughts and prayers. I will provide update #3 tomorrow after our appointment.

It's Official, She's a cuddle bug

Liviana has always been very lovey but she has turned into a huge, smiley cuddle bug lately. When I pick her up from sleeping or just hanging out in her swing she immediately burrows into me, cuddles, smiles and snuggles in close. She is so unbelievably sweet. I wish everyone could see her big smiles and the bright twinkle in her eyes when she is happy. She is so amazingly precious. She is at that age where she will stop nursing spontaneously and look up at me and smile and coo. I could just eat her up.

I am working with her everyday on her exercises for her neck. The physical therapist was rather nervous about her having the hemivertebrae so she said we would not be aggressive with her 'in case' the neck issue was a result of that rather than muscular issues. Some days she does great and does not get too upset and other days she is quiet vocale about not wanting to do her exercises. I can see a little progress so far. Hopefully things will continue to improve.

Saturday Liviana and I went out on our first "real" outing. So far she has just been to doctor's offices and the hospital. We ventured out to the exciting world of grocery shopping. Within a few minutes of being in the store she started crying in her carseat. Luckily, I brought her sling and I put her in that, facing outward. I probably looked like a rather standoffish person because I could tell people were looking at her and smiling. I, however tried to avoid seeming like I was welcoming people to us. I figured that was easier than asking people to not touch her since I did not want germs spread her way. After about 6 aisles she no longer was happy facing outward so I turned her towards me, where she quickly fell asleep. My sweet girl.

Liviana is growing! I don't know her official weight but I'm sure she is over 10lbs, probably close to 11. I also have noticed in the last few days she seems like she is growing alot in length. Her clothes are getting too short for her and she is almost ready to move up in size. She is still, of course, small. Many, if not most, CDH babies are towards the lower end of growth charts. The often have a harder time gaining weight because they burn more calories breathing. As long as Liviana maintains a normal growth curve we will not be concerned if she is on the low end of the spectrum.

Now that it is beginning to warm up we will be heading out more for walks, to the park and the zoo. I think we are all beginning to go a little stir crazy so the outings cannot come soon enough.

I hope everyone is planning to watch the game tonight. KU has the chance to become the National Champions! Just typing that gets me excited. Our KU flag waves proudly here in Huskerland! Rock Chalk Jayhawk!

Now onto the difficult news. Sweet, beautiful Faith Grace Miles lost her battle with CDH on April 5th at 3:48am. She was just one day shy of 1 month old. My heart aches for her parents Amy and Steve. Please keep them in your thoughts.
Sadly, another sweet babe, Drake Michel also lost his battle on April 6th. He was born on February 18th and fought so hard. Drake and Faith are surely playing together somewhere and smiling down on everyone. This is such a devastating diagnosis and it takes far too many lives. We are so blessed to have Liviana with us each and every day.

Take care everyone......More later.

CDH AWARENESS DAY!

I intended to get this posted sooner but my little zoo crew at home had different ideas.

Today is officially CDH awareness day. While we should be spreading awareness every day, today gives us the opportunity to take time and be intentional and be diligent. I ask each of you who read this to tell 5 people you know about CDH. Tell them that it affects 1 in 2000 babies, more than Cystic Fibrosis and more than Spina Bifida. Tell them that the survival rate is a frightening 50-60%. Tell them that there are only 100 hospitals in the country with ECMO machines, which are crucial lifesavers for many, many CDH babies. Tell them the often lifelong challenges these little ones can face after overcoming the hurdle of surgery, learning to breath and getting home from NICU. Tell them that you know a babe who has survived CDH named Liviana but there are many others who have become heavenly angels.

My hope is that more people in the medical community will learn of CDH and begin researching the potential causes or genetic links. I want more doctors in more hospitals trained and experienced with CDH. I want more hospitals to have ECMO available so families can stay closer to home and so undiagnosed babes will have a better chance at survival. I want radiologists and technicians well-trained on what to look for so families can prepare and medical staff can be ready for these little ones arrival. I desperately want for not one more family to face this often devastating diagnosis.

I have been typing this with one hand with my sweet angel snuggled in my arms. I feel blessed to have her here and hope that her presence in our lives can make a positive change in someone else's life.

Below are a couple of ribbons that you can copy to your website or e-mail signature.

Hope for the Hoskins

It is time to give back the help that others have given to us.

I became aware of the Hoskin family through a dear friend of mine, Kara. Jeff and Allison Hoskin are from Wichita and have three children, Preston, Parker and Bailey. In 2006 Jeff was diagnosed with Leukemia and after many treatments is in remission although not officially "cancer-free". While the family is thrilled that Jeff is in remission their joy turned once again to fear as Allison was diagnosed with Hodgkins Lymphoma in the Summer of 2007. Imagine mom and dad both having cancer and three young children. Allison eventually responded to treatments also and seemed to be in remission.

Kara received a call this past Monday telling her that Allison's cancer was back and it had moved to the area around her kidneys. They have taken Allison 12 hours away to Mayo Clinic in Minnesota where they will begin aggressive treatment that essentially means killing off everything in her system, including her own immune system, through high dose chemotherapy and then adding her own harvested stem cells back in so her system can attempt to rebuild itself.

As you can imagine this is extremely difficult for the family. Allison is 12 hours from home, from her family, from her 3 children. This entire situation is of course an emotional and financial toll on the family. They need to be there as they can with Allison. The cost of gas, food, lodging and travel expenses are mounting. They need help to be there for Allison and get her back home with her children.

You can help but visiting the Hoskins website here. Even $5 can help. They have paypal setup on their page to take any donations and assistance you can offer.

I have three children of my own and I cannot imagine the difficulty, fear and pain of his situation for the family.

Please help if you can and remember to keep the Hoskins in your thoughts and prayers.

Amy

Little Miss Spunky

I have often called my daughter Aria by the nickname, "Spunky". Since Liviana's arrival I have also realized that she too qualifies for the nickname. My mom looked up the definition to spunky and this is what she found: Showing courage; possessing or displaying courage; able to face and deal with danger without flinching. Yes, that is definitly Liviana and pretty much all CDH babies.

I apologize, once again for the delay in posting. I have many updates since it has been so long.

Liviana had an Orthopedic Surgeon appointment on March 13th. He said that she did not have any evident curvature in her spine at this point. He said she did have multiple areas of hemivertebrae on each side in her thoracic spine. If she ends up having an equal number on both sides they will cancel each other out and she won't have any curvature. We are redoing x-rays in 6 months when we will be able to tell more. She also has some anomolies in her cervical spine (which is up towards the neck.) He concurred that her head turning issue is likely torticollis and recommended physical therapy. We had to reschedule physical therapy because of childcare issues so her first session is this Friday. I have already been working with her at home and see minor improvements already. There is still a little part of me that worries that the neck issue is related to her vertebrae issues. We will know fairly quickly if she does not show improvement from the PT.

At our OS appointment Liviana weighed 9lbs. even! She was also 21.5 inches, although that is the least accurate measurement. At her 2 month appointment the next day she was 8lbs. 15oz. The difference I attribute to a digital scale vs. a manual scale and not weight loss. Either way she is gaining wonderfully, still about an ounce a day. She is still in the 5th percentile for height and weight. Our pediatrician is not worried at all. Given everything she went through in her first 4 weeks they would not expect her to be average or higher. Our doc thought she would eventually catch up because she would continue to go through a growth spurt at a point where other kids would not. She is perfect either way.

She breezed through her 2 month check-up. She is doing wonderfully, happy and healthy. She has some dry skin issues but that is easily remedied. She has been off of her prevacid for almost a month now and is doing fine. I decided to try her off of it because I suspected that some of her discomfort was from the medication and not the reflux. She does have minor reflux issues still but nothing to warrant medicating.

She spends most of her days in the sling accept when she is taking a long nap, at which time I will put her in her bouncy seat. She smiles so much and gets so excited when one of the kids is coming to chat with her. She has rolled over a couple of more times and is tolerating her tummy time. She is sleeping great and slept until 5am the other night before she woke up to eat. Lucky me!

I am so excited to see her growing up. She still has really blue eyes and I think, accept for shade changes, they will be staying that way. Now we have a blond haired/hazel eyed, brown hair/brown eyed and brown hair/blue eyed; Hmmm, what a strange, yet beautiful mix of children.

With spring approaching I am getting excited about taking the kids for walks and to the zoo. Liviana loves her sling and will do great hanging out seeing the world while I push the kids in the stroller. I have taken a couple of outings with all three kids and it was much easier than I imagined when I was pregnant. Like I said before, it seems like Liviana has always been with us and the transition has been pretty easy.

Now, onto other CDH babes.

Sofia Rose was born March 10th in Kansas City. She is currently on ECMO but is improving and hopes to have surgery in a couple of days. Please keep her in your thoughts and prayers. You can visit her blog through the link at the right.

Cadenne Hope was doing great at home after having g-tube surgery and taking full feeds by mouth, Yea Cadennne. This past week she started spitting up all of her feeds and is back in the hospital. She may have an infection, they are still investigating. Please keep her and her family in your thoughts. Her link is to the right also.

Ned has had his third surgery and is doing great. What a superstar to go through hernia repair, heart surgery and bowel surgery and be doing so well. He is starting feeds and on the road to going home. Yea Ned!

Please keep Emerson in your thoughts. She is at CHOP in Philadelphia and has recently started running a fever again. They have discovered that a previous infection (E-coli I believe) has attached to the patch used to repair her hernia. They are now deciding whether to do another repair surgery now or give her antibiotics for 18 months and do surgery after the course. Please, please pray for her family. They just want Emerson home. You can visit her page by going to Carepages.com and entering OliverUpdate.

There are so many other babes. I will be adding more links on the right with carepages so you can follow others.


Awareness Day
Congenital Diaphragmatic Awareness Day is March 31st. I will be adding more info on awareness day this week. I am waiting to organize myself :). I wanted to give everyone a heads up though. You don't have to wait until March 31st to spread awareness so get to it :).

That's all for now. We have to get dinner ready. More this week with more photo's also. Much love.....Amy, Brad, Aria, Miles and the angel Liviana.