Saturday, May 18, 2013

A Blessing sprinkled with a little pain...

Things have been going so good for Little Miss Liberty! She has been exploring the wonderful, beautiful and BIG world! So many "FIRSTS" for her! Every day is a new experience for her. Whenever we are out, I think, "I bet this is the first time she's been to a place like this!" We were at a grocery store and she was so excited to see so many watermelons! It was so adorable.  Her english is coming right along. She's about 50/50 when she speaks. 50% English and 50% Chinese. So we are having a much easier time communicating. We have a friend who teaches ESL who is going to work with her this summer. We are super excited and appreciative for this!
Many times people ask me how she is adjusting and we honestly have to say that it has been a pretty good experience. It is difficult when she does something she shouldn't and we are not to be able to explain why she shouldn't do it. Like why she has to hold my hand in the parking lot or why she can't play with a knife. We tell her why but she doesn't understand why. Then we feel bad because we just have to force her to do it or not do it. I know it will come with time. But it is hard.
She eats well. She sleeps well. She plays well. AND she repeats well!!  Going back to the "why" issue, sometimes we say to her "sshhh" like when she is interrupting adults or talking way to loud in a quite place. So now if she is talking and someone else talks, she tells them "sshh!" It is so hard not to laugh because it is so comical! Or she will tell me, "time out?" Kind of like when I ask her if she wants a time out when she is misbehaving.  From the mouths of babes!
Moving on to her health. She has been as healthy as can be since she got here. Her physician told us she had more vaccinations than an US born child. So thank China for being on top of that! We also found out that there is nothing wrong with her leg. (She has a funny walk sometimes) but she is just flat footed. We can deal with that.  But we did have an appointment with her cardiologist and he performed a Cardiac Cath on her. We were informed that she needed to have surgery sooner...not later. Most babies with the condition she has go through the corrective surgery at 6 months old. She's almost 5!
When we went in for the Cath, she was so enthralled by all of the attention we thought she'd be fine when separated from Mama so I told then to skip the oral Versed. Boy, did I make a mistake! When they took her from me, she was crying and screaming, "MAMA!!!MAMA!!" I thought I would die! And the "Worst Mom of the Year" goes to....ME!!! I told my mom that she will always get the versed before hand!   When she woke up, she would not even look at me for almost 2 hours. She was ticked at me for leaving her. After a bit, she forgave me and was such a good girl during recovery. She is such a busy little girl, I thought it was going to be very hard to make her understand some how that she needed to lay flat for 6 hours! I know from experience, some adults can't do that after a Heart Cath!
The Cardiac Catheterization didn't really show anything they weren't expecting except her right coronary artery comes off her left coronary artery instead of coming off her aorta. This causes a slight problem because her pulmonary stenosis sits directly behind this area and the right coronary artery rides across the aorta. :( He said he hasn't ever seen this before.
This week we went to see the cardio-vascular surgeon that will be performing her corrective surgery. He is such a nice guy and comes very highly recommended! We have the upmost confidence in the team at Advocate Children's Hospital in Oak Lawn.  He explained everything to us and told us that once he gets in there, he will determine if they are able to fix the pulmonary stenosis (blockage in the artery going to the lung) or if he will need to put in a conduit from her right ventricle to her pulmonary artery. If the latter happens, she will have to undergo another surgery later in life because the conduit will not grown with her. :( We are praying they don't have to put in a conduit! That will be the 5th time she will have to be opened! :(
We are so blessed that she is having her surgery here in the US. First, because we love these doctors and they know exactly what they are doing. Second, the staff at Advocate Children's Hospital are remarkable! I am not exaggerating when I say from the minute I walked in until the minute I walked out, every single person I came in contact with was super nice and professional! I was so impressed! And third, I know Liberty, although in pain, will have her family who loves her by her side comforting her and caring for her every step of the way!
Prayers on May 23rd and for the recovery weeks that will follow are much appreciated!