Okay so here it goes.. *warning* i am still in self pity mode!

Good afternoon. I hope everyones saturday afternoon is going well. It is a nice and warm 30F outside and winds gusting like hell out. Uhh.. Not good for retail therapy! lol. So when i am too upset i usually place myself in my computer room so my hb does not have to see me cry or my kiddos. And you guess it that is why i am on the computer. I figure if i type it out i am good to go.
Yesterday started out okay.. Usual day in the life of me. Ran late to work and such. So i take ms K to the doc. Talk to the nurse. Tell her my list of issues with ms k. Then i hear a comment outside by our pedi.. "SHE CAN'T KEEP DOING THIS TO ME! I HAVE PAITENTS TO SEE!" My feelings were so hurt. I dont want to call her at every whim so i write a list for when i see her. So she comes in and sits down.. asks me what is wrong. I am very standoffish as i heard what she said. She says wait one min i have a return visit. Brb. Great. She comes back I open up more to her because if i dont tell her what is wrong it could possibly hurt or kill kenadie. I then tell her. My pedi grabs her own head turns it away from us. Then takes a deep breath and says with tears in her eyes.. Alisha I think she is in heart failure again. COME AGAIN?! She said i knew it when my nurse told me you had alot of things you had to tell me. She was hoping the lung xray would clear up thinking it was just the cold. No such thing. She has fluid on the lungs because of the blood being pushed through at a rapid pace. She also listened to her fontanelle (aka soft spot) and heard a swoosh.. You are NOT supposed to hear one! :*( Right now my heart aches badly. The one person i look to for strength was RUDE or so i thought till she opened up to me. Her dh just left her after 20yrs of marriage. So she was having a horrid day. Then she breaks down and says how much she cares for my ms k and how she is so scared her self. I know drs are humans i work with them every day. But sometimes i think we forget they have emotions too and they have good and bad days too. She told us she has never had a patient with this condition and from what she has read it is so RARE. We may not even be able to get treatment in Dallas. We may have to go to the mayo clinic or shriners (chris from sf group if you are reading this shoot me an email please!). I personally am just baffled by this. I am like please tell me i am flipping dreaming. I am so scared i am going to wake up to my child dead or something. Now on top of this i might lose my job. If i lose my job.. i lose my house, car, and well you know how the shit rolls down the hill.. well that is what it will do. Honestly i will focus on that later or try. But right now. I feel like i have been punched all the way back down to ground zero. A minor set back i can handle.. but this?! Not so much. So needless to say i was an emotional wreck at the docs. The ladies that are in the office are just amazing. They comfort me when i am by myself as i was yesterday. Dh went to the funeral for his BFF. Her pedi did tell me to call her anytime and let her know these things so she is not bombarded on thursday and maybe we can solve somethings before our thur/friday meetings. Ah okay will do. We are the last patient scheduled on Thursday though. So no worries about taking too long next week. lol. We may very well be in dallas next week. I guess we will find out in no time at all. Welll i will explain more later. This is just so hard on me.

Not a good appt

and right now i dont feel like elaborating. I am just upset. We are dealing with heart failure again. :( I will try and pick myself up and write more tomorrow on this issue. I am just sad right now.

Hello All!

Alexus watching baby einsteins in her room: Kenadie sitting in her sisters high chair:

Good afternoon. I hope everyone is doing well. I thought i would just say we are dealing with more of the same. I can't get anyone to get my daughter the proper tests she needs for her brain and i am about to be one p'd off momma. My pedi says if we can't get it locally we will have to go down to dallas. Which i think is a crock of sh#$! I mean come on! Then they say they dont want to do the MRI here locally till May. umm hello blood flowing condition is not like a hangnail my friends! Ugh. So yes. Then ms K decided she wants to destat this morning. Not really my cup of tea but she self corrected and was fab. She came to work with me for a few minutes bc i was running late. Everyone coo'd over her. I will update after our appt tomorrow. I am nervous about it but eh it has got to be done right?!

A mini update

Good morning. First off my dh needs some prayers. One of his bff's passed away. I got a call yesterday morning at 545am from one of his friends. J said alisha i have to let you know that L passed away. OMG do what.. please make sure i am awake. So he said it again. Then he started bawling saying i just need my friends. So i called dh at work and had to break the news to dh. Then dh called him. This is one of the guys that stood beside him when we got married. His drinking buddy, clubbing buddy, and the reason we are together. The night we met him, L, and J were all out clubbing and they were drunk and hungry. I was working at denny's and had been J's waitress for a long time. They came in and i was like omg.. He is hot! L was like hey you come over here and be our waitress. So I did. And then i was like eh you i think your hot.. And well 6 years later and 5 kids later (3 daughters, 2 angels) here we are! So my dh is kinda taking it hard. I am just trying to be there for him when he needs me.
So now the rest. Ms K is doing okay. Weight wise we are still about the same. Respitory virus.. still got it. A little rattly (if that is a word). She now has an O2 monitor at home. We keep her on that when she sleeps and when she is looking purple in her extremities. She is such a happy baby for the most part. Loves to give you those gummy smiles. Sometimes i cry my eyes out just seeing that gummy grin. This baby loves me so much to share that with me. She is certainly a momma's girl. She will put up with her daddy but when momma is in the room.. it is tough as nails for her to be with anyone else. lol. We have our team meeting on Friday this week. And frankly i am NOT looking forward to it. I should have not googled anything about her medical conditions but I did. Thanks to Dr. K for telling more about the pros and cons.
Oh ms K has found her hands! She is club fisted alot.. But this past weekend she opened them and looked at them and SQUEALED! She loves her hands. She also tried to grab my nose of all things. Man she needs those nails CUT! lol. I am so excited for ms K that she is doing this. Today also in the car she was just cooing and giggling. She usually is pretty fussy. So it was nice to talk with her on the way to my grandmas.

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.

Good Morning.. we are leaving for dallas today!

Good morning everyone. I wanted to start my blog off with a pic of ms K from the v-day heart banquet. She is very sleepy in this photo. She got lots of lovins and attention. :)
So ms K has her sedated echo tomorrow. I am praying we still get to do it because she has a really wet cough. If her condition gets worse tonight i will take her into dallas children's hospital before our admission time. I sure dont play with ms k and her medical antics. LOL.
So our week has been okay. She has had a couple incidents. But nothing too traumatic. She almost got herself an er visit when her nail beds were purplish on Tuesday. I dont play around with that business. She got to meet the govenor of oklahoma. I will post a pic when i can. The MLH (mended little hearts) group went and had their pics done with him and he signs a bill yearly for them. I had to leave so my mom was there to be with her. She also had a surgeon visit on tuesday for her G tube.. He wants to give her a different size of mic-e button. So i will talk to the pedi today about that. He was impressed on big she has gotten. I swear she has had a HUGE growth spurt. Length wise. Weight wise she is still hanging around 11.5lbs. Well i will try and update when we get down there. It is looking like we will have to stay at a hotel tonight because the rmh is filled up.

Hello!

Hello.. I hope everyone had a great Valentines day. Mine was okay. Ms K did okay over the weekend. She was pretty sleepy and was today also. I still dont have an answer from her cardi as to when we are going down there. Tentatively Friday afternoon. But again we shall see. She has had a bit more blood in her tube. So my mother is taking her to her gastro surgeon tomorrow. Hopefully he will give us some answers. Also ms K is having her pics taken with Gov. Henry tomorrow with the heart kiddos in our support group. Thursday is her pedi appt where i am going to raise some concerns that i have about her. If it is not one thing it is another right?! Her weight check today went okay. Same weight as thursday so at least we are not losing right. Well i will update more tomorrow. I am exhausted today for some reason.