More about Lydia and her Hemangioma she has

Being at Children's hospital for a week and half and finally getting home Friday afternoon felt so good to be home and sleeping in our bed!!! Lydia has been off her schedule since we have been in the hospital and has been eating 2x during the night last night she went from 6pm-2am which I thought was good! I couldn't wait till 9pm to feed her and was just going to see how long she would go yep she made it till 2am which was great! I didn't sleep good last night! Not sure why just have a lot on my mind with Lydia and her Tumor in her throat and praying every min that it's shrinking with the medicine she is on so when she has her 2nd surgery the doctor will come in and say the medicine is working and she won't be needing the major surgery!!! Never thought Lydia would have her first surgery at 2 months old! Never did I thought I would have to say good bye to her before they put her to sleep either! that was so hard especially when the nurse takes her away from me and as they are leaving she goes we'll take good care of her!! I lost it then!!! but by the time I stopped crying the doctor came in and told us the news she had a hemangioma (it's like those red strawberry birthmarks you see on baby's but this is rare that it's in her throat area) by her air way!! which I demanded the doctors to do this test on her because there definitely was something wrong with her cuz she wasn't breathing normal! They wanted me to bring her home the 2nd day I was like we aren't bringing her home till you figure out what is wrong and you do the bronchscopy they finally listened to me and did it! This tumor she has could have gotten bigger by the day and actually would have it's a fast growing tumor and would have blocked her air way and she would have died! The pediatric doctor came in at night after the surgery and said a mother knows best about their kids and I am glad you made them do this! well at first he was like wow I thought the doctors were thinking I was nuts. They put her on a medicine that will shrink the tumor and we do think it's working because her breathing is like night and day difference and she's like a new baby!!!!!!!! We will know for sure March 6th at 7:30am if it really is!!!! She will have a lot of doctor appointments from now till she's at least a year old since this tumor grows for a year or so! She will be seeing the ENT, oncologist, and her pediatric doctor. I guess if she had to have a tumor this would be the tumor we would want her to have she won't need cemo or anything! We are just glad she will be watched with wonderful doctors! We met with the oncologist right away after her surgery and he was awesome! We are going to see him Feb. 20th and then Feb. 27th she has her 4 month check up a few days early and then her pre op physical with her pediatric doctor and March 6th is her surgery!

Be sure to get more updates from her caringbridge site we have made for her :-)