Wednesday, December 21, 2011

Dark Days along with my Pumpkin update

Sorry blogging followers. As most keep up, the 16th was just last week and that marked the 4 month anniversary of our sweet little angel. I find myself more and more just wanting to be isoloated on that day and days surrounding it. A cloud just comes over me and I just want to be. We got to spend the afternoon having lunch with Alexis as it was a nice day and we actually got to take Mackenzie out and just sit with her. We sat there for a little over a hour. We got to meet the wife of the man who lies closet to Alexis and that was nice as she told us a little about her husband so now we know a little bit more of the man who lies near her.

getting ready with daddy to go see sissy

Mommy with both her girls..

sunday also fast approached and the day just slipped from me as i was running all day and scott and i even attended his region christmas party. It felt good to finally be in the mix of things as I assisted where i could. But come 1 am it hit me that it was my first Sunday that i didnt go and see Alexis and it totally crushed me. I layed in bed and just cried. I just felt so horrible that i let life get in my way of going and sitting with my angel. I was devasted. Needless to say, i went straight after work and just apologized as much as i could.
Yep you guys read right, I went back to work this past Monday. Although scheduled to be off till the first of the year, I thought that as dad and i go back to work at the same time, that wont be a good time for us to transition into a schedule with her so it would be eaiser for us to gradually do it and since i have most days off for the holidays, it would be easier for me to go back since im only working a few days out of the week. And both of us being without pay right now is getting a little old as well. So far so good. A little hetic first day back but that was to be expected..

Well Mackenzie's 2nd MRI finally happened today. It went a whole lot smoother than her first one. They only had to stick her one time to get a iv and they did it after she was sedated. We got to the Children's Hosptial by 730 a.m. and got all registered in. They took us to the back to get us all ready and introduced to all the doctors and nurses and all kinds of different people. The childrens' hospital is super nice and has such vibrant colors on the walls. They brought in little toys that they thought Mackenzie would like so for those who donate to the hospital, keep them coming becaues they do truly use these items. They also had a lot of wagons/push cars in the hallways which i thought was pretty cool as well. We got to go back about 945 for them to go ahead and put Pumpkin to sleep. I held up so good until that part when we had to kiss her goodbye as we had to go back into the waiting area. We loved her and said a little prayer for her and I just cried. Pretty proud of myself though as that was the only time i did cry.They said it would take over a hour and then she would go to recovery so we waited. Here though, parents have waiting room and then if you come with more family then they have a nother waiting room for them. They only allow 2 family members in the actual children's area as to not overcrowd it. The other sucky part of the day, in recovery, they only allow one parent. I knew Scott wanted to go but he knew that she would want mommy so I ended up going back. That was really hard deciding on who should go back and it really sucked it had to only one of us. No exceptions. Needless to say our little pumpkin was up and wide awake and was being loved on by the other nurses. She got really fussy as i was walking in but mommy had the magic paci with me and as soon as i gave her that and in my arms she went, she was fast asleep.
RESULTS: It is a vascular tumor. They said that it is larger than they first expected. It actually fills up the entire orbit of her right eye. Its called something like a hemogematic tumor. something like that. They said that it looks like her nerves and bones are actually molding arounding it so that is semi good as it is not affecting anything negatively yet. It's kind of like her body is actually catering to the tumor. It is a beign tumor but we were told that it will get bigger and there is a chance that down the road at least first 2 years of life, that it could come back again. They think it was something she was born with, it just became more noticable over time. The good news is, she wont need surgery to repair and that it is treatable. The semi bad news is that there are only 2 doctors(they are called interventionlist radiologist)  in columbia who are able to treat this kind of tumor but we are unsure yet if they will treat someone as small as she is. So once they see her images and get the history of her and if they dont feel comfortable treating her then our only other option that we have been told about thus far is another doctor but he is out of philidephia, pa. He is the actual closest childrens doctor who operates on these types of tumors. So right now her images are going to be disbursed and consulted with these doctors to see if she needs immediate treatment, or how long she can go without treatment and if they need her to get bigger or if philly here we come. Dr.Bradley said that it is a pretty decent size tumor but from what she can see right now, we are in the best case senario. Treatment is going to consist of injection shots to the vessels. She will need more than one treatment. Pretty much they will inject a fluid direclty to the vessels and it's suppose to collapase the vessels.  Its kind of like the procedure of how to get rid of vericose veins. We dont know how many treatments she will need until we hear from the other doctors but they do know for sure it will be multipe over time. We hope to hear something in the next few days but with the holidays coming up they said it could be the first of the year before we hear anything.
Pumpkin gowned up for her MRI. She was not happy, she wanted a bottle, they even had small little caps that were handmade. too cute.

We have settled into a room for the night since they had to sedate her and since she is under 60 weeks, it's policy that we have to stay for over 24 hours. Mackenzie has been doing great. She has been sleeping most of the day in my arms as the bed is too big for her and she doesn't like laying in such a open space so dad had to go and get her bed that she sleeps in. She is eating pretty decent and bowel movements all seem to be working good. Doctor has already made rounds for the night and said that she looks really good. If it wasn't for her age then we could go home but they had to follow policy. Rather be safe than sorry.

Her "crib", yeah not happening.. It creeps me out just looking at it.

Thank you  everyone for the  support and prayers. Thank you for caring and loving our little princess just as much as we do.

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