Thursday, April 17, 2008

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.

Wednesday, April 16, 2008

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.

Tuesday, April 15, 2008

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.

Monday, April 7, 2008

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.