Well HE#@!

Hello there. My ms kenadie decided she wanted to complicate things just a bit more. Yesterday's appt went okay. Her weight was hanging steady. So her doc decided to give her vacs. Before she gave the vacs i told her i thought something was off with kenadie. She said okay that we would watch it. Well last night she decided to spike a 101.5 fever and be very very cranky. So I called the on call nurse she told me to call the doc so i have to call the on call nurse to get ahold of her. She says be in the office at 815am this morning. So we do. They take a pee sample and ms kenadie is still running a fever. Do a chest xray and it is a bit fuzzy and hazy. So they decide to do blood samples that we are waiting on. Her urine test was spilling out white cells in it. So that equates to an infection. So they gave her a shot of antibiotics and now we wait to find out if she has to go in hossy for antibiotic drip or we can do oral. Her cbc will tell us the story. She has also lost 2 oz in weight overnight so her doc was a bit skeptic. She was trying to decide on throwing us in the hospital now or wait it out. I chose the wait it out method for right now. Until we have a firm answer. Just because like she said the hospital is a germ breeding ground and she has a piss poor immune system right now so we can't afford her to get anything she does not already have. Oh while they were doing her xrays they noticed that her gi tract is thickening and they are going to have to watch that and make sure it does not do anything funky.
Ah funny story.. the xray tech that did my daughters chest xray said "did you know she has wires in her chest?" oh my people i was so tempted to say no but i said yes. I mean seriously.. did you think i did not know?
So anywho.. we are waiting on the doc to call and let us know what is going on. She said bw would probably come back in the morning.
Now i have a mini rant. I am feeding kenadie this morning in the office.. a lady tells her dh that i should cover her up and her child should not have to see that. Umm do i tell her to cover her baby when he eats?? NO! She told him it is unnerving.. IT IS A FEEDING TUBE PEOPLE! NOT AN ORGAN HANGING OUT! I can understand.. It took me a bit to look at it. But really it is not horrid looking or anything. Plus do they really feel the need to say stuff loud enough to where i can hear it? My child is precious in every way in my eyes. So really i dont care just makes me irritated at how stubborn folks can be.

We are back from dallas!

My ms kenadie while getting her tube feeding before going to see dr. nutchent in dallas. :)

So we finally made it back from dallas. We were greeted with a wonderful ice storm on monday preventing us from coming back home. Then on tuesday more of the same and the highways were shut down. Then dallas got hit on Tuesday night wednesday morning. But by the afternoon we were determined to come home and drive slow. So a drive that should have only been 3 hours turned into about 5 hours long. Not cool for a baby who is having issues with her G tube. Sunday night her G tube started bleeding around the site and is causing pain to her. So that made for a fun and interesting trip. The ladies at the RMH were awesome when she was being cranky. There was always someone asking to take her off my hands. One of the mothers said it helped her cope since her baby was in the NICU due to prematurity and she could hold and love on kenadie. I was like girl go ahead. :)

I spoke with kenadie's pedi last night on the phone and we chatted about the update and what to do. She would like kenadie to go ahead and have the chromosonal testing done just to rule that out. I personally dont care what the results are as long as we have an answer and how we can go about getting her treatment under control. kwim. When we talked she said she thought kenadie did not have the outward appearances of syndromes but she has seen babies without them. So we just have to remain positive about everything.

I love my baby so much and it really takes alot out of me to know something may be wrong and to see her in pain. I get so frustrated and angry with the whole thing. My heart just kind of aches right now. One thing we are doing right now is just trying to live our lives normally. As normal as you can get with doc appts and nurses being in your house.

well i will update more when i get back from her appt. it is at 130pm cst. sorry it is so scatterbrained.

Just an update from dallas

Hello all. So we are in dallas right now. We got down here about 730 pm last night and we are at the ronald mcdonald house. Everyone who has seen her comments on how big my little one is getting. We seen dr nutchent today. And well we dont have any answers right now. He wants to do a sedated echo on 2/16/09. He says we can then get a good measure of pressure in her heart and see what exactly is going on. Should she go into distress before then they would obviously move it up. He said if you look at her outward appearance you would not know that the lil miss has a heart defect. But this is the same baby that you really could not tell she was in total heart failure either. Then he thinks we have another issue dealing with weight. He says it could be something hormonal, malabsorption, or some minor disease. Okay you can not just throw out a disease word and expect me not to freak out. But i am trying to stay calm till we have answers. It is just that kenadie does not do so good when you throw % at her. Only 1% of babies have a congential heart defect and 3% of those have to have them repaired and of those 3% only .5% go into heart failure before their operation. Hmm let me see here... We are not doing so well with percentages. So no rolling the dice with my kid. So i am left with no answers again. We dont understand what is going on with ms kenadie. My heart and my mind and really exhausted right now. I am trying to be strong for her but i am just tired.
Being here at the ronald mcdonald house (rmh) is really a humbling experience. It helps in a sense and then just makes me down right pissed. I mean why does a 1yro have to have cancer???That child has not even gotten to go potty on a regular potty. Ride a bike, have fun with mom or dad? I just dont get it. And you know through this process these moms here have never made us feel like our problem is small. They just support you through it. I do ask for prayers for the kiddos here. There is a few cancer kids and a few transplant kiddos. WEll princess kenadie is sounding off. Gotta go.

Okay so i tried to brave face it

I guess i tried to hide and put my brave face on. Really right now i am scared out of my wits. I can't stand the fact that i have to watch my child's breathing. Some nights i am so scared to close my eyes for 5 mins in fear that she goes into heart failure. Once you have been there it changes your life forever. I seen her sweat tonight and it was like enough.. I can't take it anymore. This baby deserves a break and fankly i think this momma deserves a mental one also.
I was listening to the mary tyler moore theme song and she will make it after all. :) In fact that is what got me to crying.. I know she is going to make it.. Just tonight i am hurting emotionally and mentally and i am exhausted emoitionally and mentally. sometimes i feel like i am going to break into pieces mentally. like i have had enough and i am done. but i know i can't quit. i am her mother. i am supposed to be her rock and her strength. frankly this sucks sometimes. Just right now.. I guess i just need to cry it out.. kind hard to type while crying but hey the key board needs a good cleaning.

well i leave you with the video i was watching and listening.. i am going to cuddle up to my pillow have a good sob and just pray we get some answers and hope that all will be just fine. I will keep telling myself that she will make it after all. Btw i used to play the mtm theme song when i was pregnant and going through my issues too. I always told my self i could make it after all!
oh and another thing that bothers me a bit.. i am back at work.. so i get the lovely pleasures of coming in on the residency floor of the ob floor. you get to hear of how they dont want to be pregnant or their baby is annoying them. or you see some lady you know who is had one too many hits on crack with a healthy baby. really life is seeming so jaded and not fair to me right now. my friends child dies of brain cancer, another one of my friends children has kidney cancer, and my daughter has heart issues.. and this seems fair HOW????? People keep telling me God has a plan.. I am really trying to believe it. I know these children are so special and will touch many lives but it just does not seem fair. okay well enough for now.. i am tired and i am going to try and get some sleep while aaron is taking his shift of watching kenadie breathing and stuff.

Well CRAP!

So as you can tell i am very frustrated! I was going to come on and be upbeat and what not. But after i got off work, done with school, and went to my gma's house i picked up kenadie and her hands were clammy and she was sweating. I asked my gma how long has she felt sweaty and she says oh since about 5pm right after i tried to make her eat from a bottle. My heart dropped and i wanted to scream NNNNNNNNNNNNNNNNNNNNOOOOOOOOOOOOOOOOOO! SWEATS = BAD! So i called Kenadie's pedi who had me take her respiration rate, capillary refill rate, access her retraction of her breathing and check her bluing. All checked out okay beyond the resp rate which we figured would be off due to her having these symptoms. So now ms kenadie wants to have heart symptoms again. What crap! Some how i was just hopeful that we would go down and all would be fine.. Well in my imaginary world anyways. My pedi told me to watch her tonight and if i think it gets worse or anything she will direct admit to the hospital and have her flown down asap. So at our appt today she lost another .5oz and our pedi was very frustrated she could not understand what the heck is going on with her. She did not lose this much weight when she was in heart failure the first time. But she did decide to wait until monday for us to go to dallas. Then she told me to call and let her know what is going on down there. Before her appt i was like if they mention repair i am going to say WAIT! But now no way.. Fix it now!
Oh btw.. her insurance approved us till feb 15th. Then we have to go see someone local.. yeah right and the sky is green all the time. We are doing another appeal then too. Well i will update more tomorrow when i have dry eyes and i am not so frustrated where i want to throw something.

So i called the on call last night

So last night when i got off work it just was not setting with me well that kenadie had lost 2 oz of weight. So i decided to call the on call last night. Which i must say i do not like the on call protcol because you have to talk to an operator then a nurse and then she decides if you need to speak to the doc. Okay so i told her eh my child is a heart baby and dr johnson said to call her if i needed her. So i did. So doc J calls me back and says so glad you called me. Then she ran through her noodle of what could be causing this and then said bring her in my office tomorrow at 1130cst to see what is going on then i may admit her due to weight loss and go from there. If the conclusion is her heart then she will have her flown back down to dallas so that they can deal with that there. In my opinon i want to go there anyways so i have the confidence that she will be okay. I know how they work and i know their client care. And i must say i have a wonderful pedi that agrees with me. So i will be taking her to the doc here in a little bit. Part of me is hopeful then part of me just says whatever will happen will happen and i have no control and i just have to have faith that all will be just fine in the end. So i will do my best to try and update when i can.
alisha

Ms kenadie update for today!

Hello there. Well the home health nurse called me with our update for today. Obviously kenadie did not recieve my message that she is supposed to gain weight and not lose it! She has lost 2oz since monday. That is not helping our case for her heart repair to wait. We were hoping with weight gain that the lil ms would gain and we could argue our case to wait a couple months. That may not be on our platter now. Her cardi and pedi are both out today so i have left messages and i will see what they want me to do tomorrow. I am wondering if we are going to going down to dallas sooner than monday. My pedi says she will shoot us down there quicker than you can say i and she does not care what the insurance has to say about it. :P Speaking of we have not had an update from them either but from working in the medical field i know they move about turtle pace or slower. Ms kenadie has been sleeping alot again also. This concerns me. I know babies have their sleep routines and peaks and valleys of awake time but i also know what too much is for her too. So i wait till tomorrow and then find out what to do. Btw the pic above is my little queeny sleeping in her car seat on the way to an appt the other day. She does have quiet the cheeks. :)

A pic of the double K's.

So i promised a pic of my cousin's baby and my baby together. Here they are. He is such a handsome little boy.. Can't wait till ms kenadie can come play with him again. She was about 2wks old and he was a couple days old in these pics. They were at the same hossy together and exactly 3 floors up (i mean exactly.. same room # different floors ;) ) I am so excited to see them grow together and play together.

Updates and my first day back at work

Good morning everyone. So first the update on ms kenadie. Well since getting home my dear child wants to be a drama queen and try and get herself another hossy stint. She lost 3oz during the week last week and yesterday we went and weighed and she weighs the same. UGH. Her doc is giving her another week and then she says we might have to go back in to re-evaluate her feedings and what not. She is hanging around the 10lb mark. I say she just wants to be a girl and watch her figure. ;) As for her heart murmur well it is there still and it is soft so i guess soft is better that really loud. They will be doing all her tests on monday when we go down to dallas for her follow up. We will also find out if we have to stay or we can come back for her care.
I do need some prayers on this. My insurance is now refusing for kenadie to get treatment down in dallas. They say we have the services in oklahoma but the services here almost killed my child! I can't let this happen to her and i wont. So we need all the prayers we can get to please let them approve our appeal so she can get her treatment otherwise we will have to pay it all out of pocket and well my pockets are already empty as it is. Also i do not want that heart surgeon here to even wink at my daughter. Her heart surgeon knows her and knows her heart. I faxed my appeal letter to my doc and she is faxing hers and mine to the insurance company and we should know an answer either thursday or friday morning.
Also my two older girls have got colds and somehow i got it. Imagine that. I really need prayers that kenadie does not get it. Heart babies have issues fighting off the littlest things esp so close to their repairs.
Yesterday i took kenadie to the store with me to get some pants for work and some yahoo decided they were going to comment on my child. Please people if you dont have a positive thing to say about a baby dont say anything at all. Kwim. I mean isn't that common sense. Plus my child has to eat like every other child in this world. She just eats differently and i know that and i know it is a shock to some people but really do they need to comment on it or act like she has some disease that they are going to catch?! Sorry but i had to get that out.
So today is my first day back at work. I am really nervous but i know it will go just fine. I have called and checked on her and so far so good. I just hate that she was crying when i called. Kind of makes me nervous. kwim. She is in good hands and i need to remember that. Well as soon as i know more i will post. Or if i need to ramble i will post. :)

WE ARE HOME FOR A BIT!

That's right folks. We are home until Jan 26. We have nursing care but oh well we are in the same house. Monday morning the doc walked in and says how does home health care sound? I was like uh it sounds nice. Trying not to get excited and then she says be right back. So she comes back and bam says pack up and leave. Folks we did everything but run out of there. It took us almost 4 hours to get ready to come home. Getting her care arranged then making sure she has her dallas appointments. Then she says i have something i need to tell ya. I was like shoot it at me. So she says that kenadie's heart has pressure on the left side and it has a mild reguritation in it again. The top patch is wanting to act funky. So when we go down to dallas they are talking about doing another procedure to fix it. I really dont know if my sanity can hold another heart surgery but it is not a choice it is something we have to do. So we get two weeks at home before going back in the hossy. Our hope and prayers are that ms kenadie does not have to stay long.
When we did get get home on monday kenadie busted open two stitches. She has a deep infection that caused the stitches to bust. Her doc said had she seen this before we would not have come home. So she took some samples and we are waiting to hear if we have to go back for iv infusion or she gets to get it at home. She also has came down with a cough. Lord please help her keep healthy. Her cardi says we have to try and keep her healthy. Do you know how hard that is going to be? I have two other children. But now my home feels like the hospital. I have sanitizing deals all around my house. And if you happen to come over please dont think i am rude by asking you to clean your hands. I can't take any chances with her possibly having another surgery. (we had someone get offended but really come on now!)
I am typing this in my computer class that i am taking. I forgot to mention my classes have started back. So i am trying to still graduate this spring. We will see if that still happens. When and if it does this mama will be looking for a promo. I am definitely going to have to now that ms kenadie wants to me my million dollar baby. Welll i will type more when i have had more than 1hr of sleep.
I ask for prayers for kenadie's heart and stomache. We would love to keep her home. :)

Well i guess i knew our steps backwards were coming!

So i guess the title is what it says. I could not drag myself to get on the computer yesterday. So the doc came in on friday and was like eh maybe you could go home on sunday with home health. So i was like whatever i am not getting my hopes up because i know my child. So yesterday morning she comes in checks her out.. says lets take one iv out and leave the other in.. wean her on some pain meds and then mom get the lessons on her feeds. Great. So an hr later the nurse comes in to do her vitals and does her temp. 101F.. WHAT?? Come again. So she leaves comes back in an hr.. 101.3F damn! So all day yesterday she ran a temp. And she was already gettnig tylenol and stuff so her pedi is concerned about infection in her insicion because it is already red and warm. So they are now doing bw this morning and a urine analysis to see if her blood count is where we need iv antibiotics versus her oral ones that she was getting. Her pedi seems to think her body is not responding to the oral ones.
Oh and the damn nurse tech took the wrong iv out yesterday! I was pissed. She took out the one that WORKED! So now they have to restick my daughter so that she can have her iv pain meds because her pain is worse today. Plus they have to give her some more iv lasix because she started swelling again last night.
My poor pedi came in our room today and asked about how i felt. Wrong question to ask me. You have your ups and downs in the hospital and well today is one of those down moments. In some ways i feel like i have let my daughter down. She is in pain sometimes. She has all these issues and i often wonder if i should have ate something more or less. Took some more vitamins.. Did something to prevent this! I never imagined that my daughter would have to eat through a tube. Nor did i think that i would sit and worry about my daughters heart every moment. I am just not a happy camper right now.
So maybe we can look at going home this week sometime.

I got to hold kenadie today!

That's right. I got to hold the princess. That made my day. She is also out of the icu too. We are back on the regular floor. Can't tell ya how happy i am about that. Part of me liked the icu because the nurses there just watched her like a hawk and did all of the care. Now they are like mom you do it. And they keep forgetting her feeds. I dont know how to mix the stuff and connect it. I did with her NG feeds but now she has totally different tubing and what not! Ah i so want out of this place. I like this hospital but man i am getting tired of everything.
Kenadie still has fluid on her lungs. They are giving her breathing treatments, iv lasix, and will be doing chest therapy soon. She is on oxygen but only a little bit. She likes to destat when she sleeps. They dont have her in a sedated state anymore. But they are giving her tylenol with codeine and toradol. Her wound site is pretty irritated so we are praying really hard it is not an infection trying to come out. Not what we need! We actually see a light of some sort.
We are going back to dallas after she is healed from this. They say it will only be a day or two. Just for observation and to run a battery of tests on kenadie's heart. I fear that u/s machine so much. It has delivered news i did not want to hear way too many times! Hmm maybe if i give it a swift talking to then it will listen! One could be ever so hopeful.lol.
So i am the "mom" on the floor. The nurses asked me if i feel comfy helping those moms who are overwhelmed with their hossy stay and just help them find things. Bc sometimes you get tired of asking those darn nurses everything. Honestly i offered to do it. Something to make me busy and to feel like i am helping other families. This hospital we are at though they dont have long term patitents. Their patitents stay at the most a week or so. We have far blown those records out of the water. But any hospital stay can be overwhelming so me being the personable person i am have offered my services to them. I helped this one momma who had a 6wker in the hossy with double pneumonia and rsv. She was so devastated and just overwhelmed. She was tired of the hossy at 2 days. So we sat down and chatted.. Talked about our babies. Things we wanted to do. And i checked on her daily and just gave her tips on how to survive and cope. At least some things i have learned thus far. I would like to think i made a nice acquaintance. Btw she got discharged yesterday. Kinda miss them already. They were part of my coping also. :)
Well we are going into week 10 of this mess. Oh i am getting questions like can i donate toys for the girls. We have PLENTY of toys for the girls! Thanks for offering. We do appreciate it. I am not asking for anything but if you feel the need to donate we could use fast food giftcerts as we dont have time to really cook a meal and well hossy food gets old sometimes. Or just a gc in general as we can get whatever the girls need as they pop up. Again I AM NOT asking for anything we have just been getting emails asking. Thanks again so much for all the support from everyone who reads our blog. We appreciate it so much.
ETA: She just pooped for the first time on her own! YAY! Smelt like her uncle zeph but we will take it! They were concerned as her bowels are really full. They gave 3 suppositories and an baby lax thing yesterday and got very little out so they were on alert for a bowel obstruction. But as i was typing her update i smelt something FUNKY! 1oz of poo. (they make us weigh her diapers)

Not going to dallas for right now

Hello all. So last night was a really long night. Kenadie went into respitory distress so they had to give her IV lasix to try and pull some of the fluid off her chest so she could breathe better. As for the echo. There is pressure on the left side of her heart. So her cardi said we will watch it and once she is recovered from this surgery then they will have her come down and they will run more tests down there.
Right now she is on a no stimulation rule. She is only allowed to have stimulation during a diaper change and a feeding through her G tube. They want her to rest and heal. They still have her pretty much sedated.
They upped her feedings on her tube and have lowered her iv fluids.
I personally am emotionally tired. I want to see the end of this but somehow the end just does not feel that close right now. I know it is just me focusing on the now. But i guess i just need to have my pity moment.

A pic before surgery yesterday

Here is ms kenadie before her surgery yesterday. She had one of her new hats that jamie made for her. She is getting to be quiet the butterball. 9.5lbs. Well i thought i would post that while we are waiting for answers. They are taking her back to the icu here in a bit.

Please pray for ms kenadie's heart!

Well folks we had to know our two steps backwards was coming. Her tummy surgery went great but when he got in there he seen a pocket of fluid and decided to drain it. Well last night she ran a fever of 102 and her hb was 190. Not good on a mended heart. So they finally got that settled but her doc heard a murmur today. A semi loud one. So we might be heading back down south again. We should know this after noon sometime. She is really really swollen and not releasing fluids like she should. I am very very frustrated and emotionally just getting tired. I wont hear from her doc until 4 or 5 this evening. I will try and update but they are putting her back in the icu. Please pray for my baby girl.

Well it is tomorrow at 4pm tentatively

So i just got a call from her pedi and she said that it is tomorrow at 4pm cst. She will be going back to the ICU due them having to cut her open and not being able to do it laproscopicly. They can't do it lap bc it can put her in heart failure and lord knows we already btdt and dont want to revisit that situation. She also is going to have 3 procedures done at once. The fundo, the g tube, and the widening of the poly tube. Needless to say she is going to be out of it for a bit. Please pray this surgery goes over well and we can go home finally.

A kenadie update and 1yr annvy of my second loss

Good early morning. I could not go back to sleep after a scream fest with kenadie. She did the screaming i did the rocking and she finally gave in. So she is still having her issues. Heart wise she is doing GREAT! Fluid levels are on the low side which is great. Heart has a "flying murmur". That equates to come and go not constant. So we are praying no patches are leaking. Her cardi says it is totally normal.
Now for the RSV they think she might have had it down in dallas and her symptoms were being chalked up to post op. Because she had that one wheezing spell and that was it.Enough to scare the dickens out of me that is for sure. She still is stuffy but she has a tube up her nose so that could be it. They will retest her today or tomorrow.
As for the GI well i was presented with vomitt this morning. Nothing says i love you at 3am like barf on me. I told her i pump the breastmilk and give it to her there is no returns on it! LOL. :) Her doc should be here around 7am or so. She is quite the early bird when she has clinic.
Sorry i did not post pic updates. I will try and get around to doing that today. She is not the happiest baby right now due to her reflux. So she keeps me quite busy. Any free hands that is NOT sick is more than welcome to come and hold, rock, and sway her! :)

So today is the 1yr mark of my second loss. 1yr ago today my children's godmother had to take me to the ER where i would have one of the worst experiences in my life. One i care not to relive. I just knew that i was not going to be having a baby in september and my heart ached so badly. I will never forget my angel maddy. I did not have her that long with me in my tummy but you fall in love once that pregnancy test shows two lines, a +, or the words pregnant.

Well i will shoot more updates as i get them.

The nurse is not allowed to say anything else!

So i have not allowed the nurse to come in and say anything bad to me for24hrs. Yesterday we got presented with the news that kenadie has RSV. Not what you want any baby to have much less a heart baby. Depending how it attacks her we might have to venture back down to dallas as that is where her cardi is at. Praying that we dont have to.
Then they did a tummy emptying scan and well it did not go as swell as we would have liked. Her tummy is supposed to empty at the rate of 50% during a certain time period and it only emptied out at 37%. So they are going to widen a tube that makes it a bit faster for her.
So the nurses are forbidden to say anything negative about her for 24hrs.
Oh my people you should have seen the nuclear med dudes. You could tell they were not use to a baby with a tube. They could not get the hint that she was on continous feeds. Continous means all the time! The dudes remind me of bill nye the science guy and his assistant. I forewarned my fil that and he went down there with her for her second set of the test and he had to withhold his laughter!
Well that is about it. I will put up some updated pics tonight.