Insane weekend and Ms K needs some thoughts and prayers(long post, some ranting)

Good evening everyone. This post is going to be scattered as ms K is demanding of my time right now. But our weekend has been insane. We went to the doc on thursday and ms k was wheezing with low O2 stats so they sent us to the hossy for xrays and to start neb treatments. We got those done and headed to the big D. All that night I was unsettled and just nerved racked. I asked the good Lord if there was anything that was wrong with ms k to please show it to us tomorrow. So we get up and go and I tell the cardi about her edemia (swelling) of the face, purple hands, and marbled extremities. He says eh i bet everything is fine but if not we will tackle it. Well they could not sedated ms k due to her being sick but she slept through 90% of it anyways. :) What a big girl she is. So we wait and wait. He comes back in and says well mom.. I need an EKG. Okay great. Then says well.... the heart function is good, leak is getting to be good, valve good right now. Then he says.. Mom you were right. Something is not right. SHIT! So he says it is not the heart itself but she has another congenital defect. It deals with a vessel coming from the brain to the heart. He was actually looking to see if an area was blocked causing the swelling.. Nope. Not blocked in fact pouring blood an awfully rapid rate. NOT GOOD. I dont know the name of this defect off the top of my head. I knew it friday.. but alot has went on. So he says Ms K is going to need some extra tests and another surgery. :( So I look at him in disbelief and walk out and schedule her next appt. Then run into our cardi throasix surgeon he says more of the same and says alisha i so did not know she had this. But he gave me more light on this and it is a neuro/cardi problem. So i called one of the docs i work for and describe what is going on. The main symptoms this problem poses is stroke and HEART FAILURE! Umm yeah.. Check done! So now Ms K has to be closely closely monitored for a while until we can get this next surgery done. She will be getting an MRI, MRA, and a MRV done. She will follow up with Neurosurgery in Dallas and her cardi throasix surgeon also. We will NOT allow ms K to have her surgery here in oklahoma bc the thorasix surgeon has to be in on the surgeries. Also this problem is commonly found in syndrome babies which makes me ever more anxious for her results. Dr. K is going to talk to me monday more on what to watch for, expect, and to be cautious of. He stressed on the phone to make sure we keep her away from germs as much as possible bc if they need to the surgery asap they can. So they discharged us from Dallas Cho and we were back on our merry way home and got landed back at baptist. The staff at bapitst were great as usual. The ER nurses fought over who was going to care for her. They dont get alot of special needs kids in anymore bc of oucho takes them. So we got the top people from all the depts. I just got home a little bit ago bc ms K decided eh i want my O2 levels to be 78. Not good. So they got them back where they need to be and we are home with nursing care again. God bless our nurse Beth. She is so sweet. We need ms K to get well very very soon.
I am also in need of prayers for my job. I got a distrubing letter from my job stating they might let me go if i can not fulfill my duties there like i need to. Honestly i am doing my damn best but really right now that is not cutting it for them. With this economy it will be tough as nails to get another job. So i really need mine. I have to have a home to keep my family in. I need them to have just a little more patience and understanding for me as the next operation will take us a bit out of commission. I will be in dallas for about 2 weeks or more. Ashley dear.. I might just have to hit you up and say hello to you, weston, and davis. Anyone else in dallas let me know.. When we are down there we love visitors as our family is all in oklahoma.
Another thing is I need some people in my family to be a bit more understanding when i call and give the updates. I know they are frustrated but I just recieved this news so frankly i am not ready for their.. you wanted this baby comments, or how much more can this small baby do, why do you seek xyz treatments. I am doing my best and trying to communicate what i know and any additonal fly remarks would be appreciated not said to me! Please people.. dont ask me how i do it.... or say omg i could not do that. It really is NOT an option and you just do it.
Ah also cousin X called me tonight to ask how we were doing. I was like eh hanging in there. X was like well it will all be fine... hang in there. Life has it way of working out. You wanted a third baby and you got her. At this moment i felt like saying stick a pole up your nose. Then X proceeds to let me know about their child and how they are doing and when is kenadie going to do these things since she is almost 4mo. Okay.. please dont let me snap your head in two.. but kenadie is not a "normal" child as they have already pointed out to me.. so she will do things on her own schedule. When that is i dont know and frankly as long as she is alive i dont care when she rolls over or grabs a toy I am just excited that she is alive, coos, gives me that gummy drooly grin, and snuggles with her momma. All those other things are extras in life.
I know God has a plan for Kenadie and I know that she is one special little girl. I just wish he would cut her a break for a bit. She is teaching me so much about myself though.
As for me right now.. I have many feelings going on. I dont get why.. I guess i will never understand why. Did i do something wrong to get this?! I ate healthy, took my vitamins, stayed on bedrest for upteen weeks, really i am just frustrated. In my heart i know i could not do anything to cause this but my heart still aches. It hurts when people stare at my child.. snicker at her. I about slapped a man when he walked by and said EW what are doing to her. First off dingy i am giving her food and secondly could you have presented that question a bit different? Then as a mom I want to protect her and heal her boo boos. Right now i feel like i am failing her. This just sucks. She just screamed when they did a test on her and she looked at me with those eyes and those eyes say alot. Well i am going to go get my good cry out right now.. and then go on to bed. I am very tired. She has not really slept for the past 3 nights.
Btw.. I have to say how much our pedi rocks. She is just an awesome lady.