Kenadies update and another surgery

Hello all. Unfortunately we are still in the hossy in dallas. Well good news is her heart is looking great and her fluid levels around it is great. She unfortunately is not gaining weight right now. But the doc said we would see weight loss before weight gain. Today she destated in her sleep which scared the bejezzus out of mom and i. Her doc thinks it is because of her reflux.So that leads us to why we are going to possibly have another surgery. They are wanting to do a neonissin on her to fix the reflux valave so she is not able to asperate in her sleep. We have been there a few times now and i certainly dont want to go back there again. They are going to mediflight us back to baptist and deal with the issues at hand there. The crappy part is we are looking at yet another month of being in the hospital. I seriously dont know how much more the hospital i can stand. I want my baby HOME AT MY HOUSE! This week will mark 2mths in the hospital.
We have many follow up visits on her heart here in dallas. But we are praying that all will continue to stay fine on that.
If we can get some more prayers it would be appreciated. Oh yeah her bp is still yo yoing right now.

Merry Christmas and ramblings..

Hello all. First off Merry Christmas. Ours was an okay christmas. Just thankful i have my baby and family.
I have to apologize first off for the lack of updates. But my body finally just gave out on me. I slept and just layed around for the longest time. Just laying by kenadie's bedside. So we have had a couple set backs. Her upper lobes of her lungs are puffy and hazy. So they are doing therapy to help her with that. Then she is having problems eating. Her O2 levels drop a bit when she eats and she chokes. So now they pushed back our going home time. They are going to do swallow studies to see if she has a swallow problem or just acid reflux. If it is just that then they are talking of still doing a neonis surgery on her so she can keep down her feeds and she wont asperate.
Her bp keeps doing this up down thing right now which is totally normal for a heart baby that has been on bp meds for a long time. It is like her body withdrawls from it.
So on a tentative going home date.. yeah that is still determined. When kenadie had her surgery the surgeon said about 5 days then she could go home. I told myself not to get my hopes up. But i did. So now i am a bit sad about that. Today marks 7 wks in the hospital. I am so ready to have my baby at home!
Oh yeah something great happened. We went and checked in the Ronald Mcdonald house and the house manager told me that she wanted to take me shopping. So after i got settled i went up there and she took me to this room. It was filled with toys.. Omg so many. So she gave me two trash bags and told me to fill them with toys for my girls. Such a blessing since i have not had time to go and get stuff for the girls other than the one gift that i had waiting for them where they were staying. So i can't wait to get home and have our christmas. Also my 4yro birthday is on the 29th.. so i can't wait for her to see what we have for her.
Well that is our update for today.

Update on ms kenadie

Hello all. Sorry for the late update. Sleep deprivation got the best of me last night. Her surgery took about 4hrs. She was extubated around 745pm last night. The first tie did not go so well but the second time went good. Her left lung is kinda on the cranky. So we are trying to keep her calm and resting so she can heal. Her blood loss is okay. They gave her two units during the procedure and will be watching her blood level to see if she needs more. Her chest tubes are doing good.
The surgeon came in this morning and he said kenadie is doing okay. she has some puffieness on her chest and her tube is draining at a steady rate this morning. He did not feel comfy taking out the central line or the art line. He said depending on her we have a day or two more in the icu. They dont like to nail down a day bc she could make up her own mind. She will be having more xrays and tests today.
This experience is so humbling and lord i am ready for this to be over. There are alot of babies on this floor and they could use some prayers too.

Scariest time of my life

Right now is the scariest time in my life. I am trying to keep my mind all preoccupied while waiting for the surgeons updates. I hate that i have no control and that i have to depend on someone else to take care of my child. I am scared of something going wrong and losing my baby. She has my heart and i am so scared.
I keep wondering did i make the right decision. Did i do what i needed to do for her? Did i mess up? My heart just aches.

She is in surgery

She is in the OR right now. We came down to pre op at 7am and they took her about 745. They called to tell us she is under sedation and that she is doing fine. Just a minute ago they called to tell us she ison the bypass machine for her heart and her lungs. (standard protcol) We need tons of prayers that she will do great. The first 48hrs are the most crucial.
alisha

My little drama queen!

So last night around midnight kenadie woke up screaming. I am paranoid about her ng tube and it is a good thing i am. I checked it and sure enough she had pulled out 13cm of it out. I hurridly pushed the stop button on her feeds bc i was scared of it going in her lungs. The nurse came in and examined her then the charge nurse and then xray came. The lungs looked pretty. WHEW! I was SO nervous. They put a new tube down and she was POED! But she had to be a drama queen for a bit. I told her enough of her drama stunts. We are done with those!
So this morning she is a sleepy little girl bc she was awake for a bit yesterday. Usually if she has an awake day the next couple of days she is so exhausted. That is from her heart condition.
All her vitals and what not look great this morning. she had her pre op bw done so we are set there. We are just waiting for those to come back and then we start preparing her for the
OR tomorrow morning. They will be coming and getting her around 6am or so for pre op room downstairs. The procedure itself takes 4hrs or so. I am dreading tomorrow but excited to look forward the future.
Thank you everyone for your prayers and support. We ask for many more as we head down this journey.

We are here and have a date and time

So we made it to dallas yesterday morning. We got a call at 1am friday morning saying mediflight was on the way to pick us up. They arrived around 345 am or so. So we went to wileypost airport and caught our flight then flew into love airport and took another ambulance here. The crew was so nice and sweet to kenadie. Once we got here we got greeted by many nurses and docs. The level of care here is something else. You get a totally different feeling here. We had another echo where the learned the pressures in her heart are higher than this past week. So they are cocerned about that. While in the echo the dr came in and told us that our surgery is monday morning 730 am. Not once have we heard oh she is so small we need her to gain weight. Nope.. It is the opposite. It is oh we do this all the time here. The surgeon came in today and was so nice. I got this great feeling about him. So that makes me happy. The nurses make us so happy and they have a room just for telemetry monitoring. They see a drop you have nurses running in here. The floor we are on is just cardiac kids. And the nurses are specifically trained just for that. I was so scared coming here but now i can't tell you how grateful i am that we are here. When i got off the mediflight i had this overwhelming calming feeling and then i knew we were going to be okay with her.
So today the surgeon came in and said yep we are going to fix her. Sign this paper and that one. Then he accessed her and told us how beautiful she is. He was really nice and personable. I feel pretty calm about him working on my child.
I miss my other girls really bad. Genesis wants to know when momma is going to come home and i told her that we will be home after sisters heart gets fixed. Alexus is still broke out in her rash so i feel bad that i am not there to comfort her also. But i do know that she is in great hands.

So i have a few moments

So... i have a few moments on my hands. We have a room now at Dallas CHO. They are waiting on mediflight due to the fog here in oklahoma they can not fly in. All flights at the airport have been delayed due to it also.
We are so boggled right now with all this. There was alot that went down yesterday. The surgeon let us know that he was going on vacay and that is one reason why he did not want to operate on Kenadie. Frankly i think that is so unprofessional. Not cool. That is all i have to say. He made me so angry that i can not see straight. There is more but if i went into i would have to smack the man. One thing was that he said i was "pushing" the surgery and not trying my best on her weight gain. So i am glad i know he is a terd so he does not work on my child.
I feel so lost as far as the holidays go. I am going to miss my daughter opening her gifts on christmas. The first christmas where she can tell me what she wants and "santa" made sure that he got what she wanted.
I know people have bigger issues and problems.. But why i really dont get this. After 2 losses i just want my baby at home with my family and enjoy my holidays with them. I keep telling myself that God has a reason and that he has a plan for Kenadie.
Well it is looking like we are going to go tomorrow. The fog is not going to go away until tomorrow morning. So another night here.

Our world turned upside down again

So the cardi came back in today. He said that the doc here does not feel like he can do kenadie's surgery. There is a surgeon that comes down from dallas to do the complicated operations. WTH happened to the best surgeon??? I feel like we were lied to and strung along. So the consensus is that she is going to be transferred to dallas tomorrow or friday. Then they will do the heart surgery on monday. My only problem with this being is that my daughter will be 4hrs away from my family. I will be going down there with her and so wll her dad. The only problem with this is that he will not be getting paid and neither will i. But i am sure it will all work out. Please pray for our family and my daughter. We need some peace and comfort at the moment.

You would know it!

So the cardi comes in this morning and evals kenadie. All is about the same. She lost a bit of weight this morning so he was not happy about that. Then i am like WELL???? He says the surgeon is in the OR right now. What?! So we have to wait until he is done with this case which is about noonish or so then he will talk to him about it. But i did get his recommendation out of him and that is that they want to fix it this Friday. But i am not going to shoot out emails and say we are going to do it bc i know how this can go. BTDT before. The resident is such a sweetie.. She says we should just puree a steak and put it down her tube. She is such a doll.
I will update as soon as i know when the surgery will be.

Some pics and today's update

the day of kenadie's baptism

a couple days ago

Hello all. So the cardiologist came in today. He was being a michevious turkey! He would not give any insight whether or not we are doing the surgery on friday. Frankly i am going to beat it out of him if i dont get an answer soon! I am tired of the wait and see game and the yoyo thing with the weight. I only wish i could not put on lbs like she can't. lol. She is now on continous feeds due to her burning too many calories trying to eat on her own. We tried half and half and she did okay but still lost weight. That sucked! So he is trying this. So he came in this morning and i was like SO? He was like nope nothing out of me till tomorrow morning. DAMN YOU! So i am very frustrated.

We have enough blood thanks to my co-workers and my fil. I so appreciate all the donations.

Well i will update more later the girls just came up for the holiday dinner they are having here.

December 19th tentatively

So dec 19th is it tentatively. Never know for sure with these folks.He said supposedly he will give us a for sure answer on wednesday. They wanted to see if they could get her to gain some more weight. Unfortunately we lost 2oz last night. why i have no idea. I told the nurse i am ready to scream. I am so frustrated with not having any certanity in our lives. So anywho. The procedure will take about 4hrs from beginning to end then she will be in a medicated paralysis state until they extubate her. We are expecting a 3-5 day picu stay then back to the surgical unit.

Day 26 in the hospital

So today is day 26 in the hospital. The cardiologist and his fellow came by this morning. They were a bit disappointed that she did not gain much weight since they increased the volume and the calories yesterday. It really sucks. She gained a 1/4 of an oz. They wanted 2-2.5 oz or so. Tomorrow morning they are going to present her case to the surgery board around 730 am. They will argue their pov and the surgeon will put out his pov and then they will come up with a date to fix her ticker. Please pray that the meeting goes well.. that we have an answer. and it is the right plan for her. We desparately want our baby home with us and be a family again. I want to forget this bad dream.
I will update with the answer as soon as i get it.

Sorry for the delayed post

Hello all. Sorry for the delayed post. I am at home for a quick second. We got transferred to our new hospital and i HATE it! But i will write more about that tomorrow. So one day the doc says yes we are going to operate the next says no then yesterday he says yes definitely and today was i hope to wait till after the holidays but we may not be able to. Dude do what you have to and stop waisting mine and Kenadie's time and not to mention her health. She has lost 5oz in the past couple of days. So now they are giving her stronger feeds. We NEED her strong for this surgery. Her daddy is going to go donate blood for her. So that makes me feel better. The surgery board meets this friday. I will let you guys know when and what when i find it out. Please pray for my sanity also. I dont like this hospital one bit. But it is where the experts are in her condition.

So our plans have changed again!

Let me first say that your life in the hospital is never stable and never the same. Okay so yesterday the pedi came in and did some bw. Her blood levels are not where they would like them to be. So they are going to have to do a blood transfusion when she has her surgery. Then i noted she was a bit on the yellow side again and kinda pale. So they checked some more bw and one of the values was not good what that means i wont know till today when her pedi comes to round. Her pedi said yesterday that we might get transferred either this afternoon or tomorrow morning. We will have most of answers today around 4-5pm cst.
Kenadie will be getting the tube put in her belly after all. Her pedi thought no but her cardi said it is for the best so kenadie could have a chance to heal and not use all the calories on eating and what not. So whatever is for the best i am fine with.
Last night was a bit on the rough side as kenadie was throwing up yesterday frequently. She only peed out an oz so they were concerned about that. She got introduced to pedialyte. Let me tell you that is DISGUSTING STUFF! YUCK! I dont blame her for not drinking it.
Today ms kenadie got baptized by the chaplain. She had on a pretty little dress. My mom, Tammy our nurse, and I were there to witness it. The chaplain was quick about it and did a great job! We took some pics so when i find the time i will post a pic of her. Well i will update as soon as i know the whens, if, and what nots about everything.

So our plans have changed

Okay so our plans have changed a bit. The doc canceled our cardi appt this week and we were supposed to go back in two weeks. So yesterday i am trucking along thinking we are still getting our G tube on Monday or somewhere around there. Well the nurse comes in and says kenadie needs another echo. Okay fine. So they do it and something is off and the lady needs her bp. Next thing i know my pedi is calling me saying kenadie is going to have her heart surgery next week. Dr. Rizook does not like that she is not gaining weight accordingly and the surgeons will not do a G tube until her heart is fixed. So monday we are getting transferred to another hossy where they will do the surgery.
Had i wrote this post yesterday i would have been in histerics. Today i am trying not to think about it till the time comes to where i have to. I have had my mom and my fil tell my family just bc of all the questions and what not.. it is just to much right now. I mean i seriously got asked if this surgery was necc.. UMMM NO IT IS TO MAKE HER HEART LOOK PRETTY.. YES IT IS NECC!
All i ask for is prayers for her, her surgeon, my peace, and for my family.

I dont know how i feel tonight

This morning started out with some hope. The doc had talked of us going home this weekend. And i knew not to get my hopes up but i mean she was doing okay. The doc talked to us more about the G tube but i had it in my mind that my child is fine and does not need anything like this. Well around 9 the vomitting started. Then again this afternoon. After every big feed by mouth. My heart just crushed. She is so tired and sluggish now. I mean i just dont get this. When we think we are doing good we go back the other way. So now the doc says we are going to have to do the tube. Now it is finding a surgeon that is going to touch her.
The last time she threw up i had to just walk out of the room when the nurse was cleaning her up. I am so frustrated for her and i both.
Well while typing this my child decided to throw up again. UGH! I personally am just so frustrated and they wont put the ng down right now so she can get somethin to stay in her tummy bc the doc wants to see about her weight in the morning! I am so frustrated i can spit!

Oh i could spit!

Okay so from the title you can tell i am not the happiest of campers. Kenadie lost 4oz of weight last night. So the no tube thing did not go so well. The damn docs and everyone keeps asking me if i have enough supply. What do they not get that i put out about 12oz a sitting! I mean hello! Then the doc says are you sure your latch is right. Umm yes but you are more than welcome to evaluate that. Then the lactation consultant says well i think she is not getting the hind milk. Well too bad i had not already thought of that along with her pedi. We have been doing that also. so her pedi says if she does not gain today then they are going to discuss operating on my child and putting a tube in. HELL NO! That is all i got to say! NO NO NO AND NO! This doc keeps trying to write my freaking child off and i am two shades away from tell this doc just how i feel. I am suppose to speak to her pedi today and will discuss how i feel. I know there is not much i can really do about it until she comes back on service on friday.
This is the same pedi that wanted to put my child in a children's home. Oh i about beat the crap out that one! If i have to have 24hr nursing care at my house for her then that is what i will do. Whatever it takes and whatever is best for her.
Tomorrow is our cardi appt at 2pm cst. I am ready for it and just ready to get it over with so we know what is going on with her heart. So that is my update today. Please pray i dont knock the lights out of this pedi!