Wednesday, April 30, 2008

Answering A Trach Question...

I wanted to take this time to answer a question I received from one of our readers. I apologize in advance if this turns out to be a novel, but I will try to keep it short and simple.

Kaden was trached at 6 months of age. He was showing signs of respiratory distress and continually needed to be on the ventilator. Kaden would not have survived without the trach. I mean, he could have stayed intubated (the tube down his throat) but that really isn't an option. After traching him they ended up doing test and found out he has a condition in which his bronchial tubes (tubes going to the lungs) collapse. He needed the pressure behind the vent to keep them open. The trach allows him to be on the vent for a long period of time, causing less damage to his airway. His airway is 60% scare tissue from being intubated so many times and for long periods of time. Just this last June we found out that his vocal chords are paralyzed closed. To speak your vocal chords close and to breath they open. Well, since they are closed he will most likely require the trach to breathe for the rest of his life. We should be able to get him off of the vent, though. Remember, he only has half of his diaphragm the other is a patch. So he needs to get use to breathing with this "makeshift" diaphragm. He should be able to do it...oh and he has outgrown the condition in where his bronchial tubes collapse, so that isn't an issue anymore. I kind of believe that Kaden is just so use to being dependant on the vent that he is nervous when he comes off and rightly so. He is on low settings so it is just a matter of getting him strong enough and use to breathing on his own.

As for Ava, well, she would require the trach for some other reasons, some the same some different. As you know she has a heart condition, different from Kaden's lung and diaphragm. However, her heart is not the reason for not being able to come off of the vent. With Ava, she has just shown so far that she does not tolerate coming off. The doctor's have not really found an explanation. One thought behind this is that she is just not strong enough. Breathing is a really hard chore for her heart. She burns a lot of calories just working on breathing (I wish I had the same problem : ) ). She continues to get a lot of fluid built up around her lungs which could also contribute to her work of breathing. Deciding on traching Ava is a hard decision. I have seen her in the past do well off of the vent. Like I said though, she is showing that she can not tolerate it so the doctor believes that she just needs a little more time to gain strength and this would give her that time. I have heard numerous times that when an adult is intubated for over a week, the doctors immediately trach them and when the adult is ready they decanulate them. Traching in some cases (hopefully like Ava) is just an issue of getting the patient strong enough to breathe on their own again. I hope that gives a little reason as to why Kaden and maybe Ava need a trach.

To answer the rest of the questions...
Yes, although somebody has a trach they can eat, drink, and talk. They can eat and drink because the trach is in the airway, not the esophagus. Sometimes patients with a trach need a pacimere-valve (spelling ??) to help them talk. I am not sure as to how it works because Kaden doesn't need one at this point. He can make noise around his trach. Kaden can say ma-ma, oh-oh, map (off of Dora). He can mimic everything, although he is mostly making the ahh sound. We can tell which songs he sings, and who he is mimicking.

Trach care is not that hard. I do admit that I cried the first time I had to do it on Kaden. I was so scared, but I did it and now I could probably do it with my eyes closed (not that I would try). I use to have to have somebody always helping, but I do it on my own now, so can Nate. Kaden is very calm when we do it. He knows the routine. I am not a big fan of trach care time, but it is a part of the bedtime ritual now. I do worry how we will fit in two rounds of trach care (if Ava gets one), but I am sure it will just happen...we don't have a choice. What really worries me is how much room we DON'T have in our apartment. Kaden's supplies take up a lot of space, so I can only imagine what it will be like with Ava's supplies added to our mayhem.

After posting this, you all probably realized that traching Ava is becoming more apparent. The doctor did schedule her for the surgery next week...just in case. So far I guess she has shown the doctor that she has not tolerated the wean from the vent. I am to the point that I just want to tell just to do it. I don't know. It is so confusing making these decisions. We have done it once with Kaden, I don't know why we have to do it again. LIFE!!!, can it get any crazier???? I will keep everyone updated as much as I can tolerate getting on here and typing about it. If I don't post, please don't get too concerned, maybe I will just get on to say..."Hey, still hanging in there."

Thank you so much for asking questions. I love when people ask and not judge. That is one thing I have learned from this situation...I would never judge another parent for making or not making a certain decision. We have no idea what the parents are going through or what their thoughts are about things...or what they have been told by the doctors. Each parent will do what is right for the child. We love Kaden and Ava and would do anything for them. If we would have listened to a lot of what was being said about Kaden's future, we would not have been able to enjoy life with him. I feel that Kaden and Ava will fight until they can't or don't want to anymore, and then God will be there to walk them home.

Tuesday, April 29, 2008

Still Hanging Out

Sorry I haven't posted lately, I just haven't been in the mood. Ava is still hanging out. They may try extubating later this week. If she fails then she will most likely get trached. I will post more at a later time. I just wanted to let you know that Ava is doing alright.

Sunday, April 27, 2008

Crazy Emotions...

First of all...

Thank you mom and dad for staying with Ava and giving me a chance to spend some time at home. I really appreciate it. I love you guys.


I made it back up to KC tonight. Leaving Kaden, Nate, and home was so hard. My emotions right now are indescribable. I feel like I am just crying constantly or trying to hold back the tears. I want to be here for Ava but I also really want to be there for Kaden, too. I really want things to get better for all of us. I want to be a family. I want to go out together as a family. I want to sit at home as a family. I want to us to be able to live our lives without the worry of what tomorrow might bring. Is that too many wants???

It really got to me tonight when I came in and the baby that Ava shared a room with was gone. She had the same heart condition as Ava, but was a little younger. I am not really sure what exactly happened, but I am pretty sure that she didn't make it. I feel so sad for her family. Her mom just left two days ago to go home for awhile (out of state) and then this happened. It really gets to me, especially right now with Ava and how she is . I wish I could just make everything better and have no worries. It just made me realize, again, that things can happen. I kind of get into these modes where I think to myself that things like this wouldn't happen to my family...but sitting in this room with just Ava makes me remember that it can. It makes me sick to my stomach just thinking about it. I know the saying..."live like there is no tomorrow," but it is hard to "live" in a hospital room. I want to know that my baby is going home with us, I want to know that both of my babies are going to grow old and live a happy, fullfilled life, and I just don't know that. I guess nobody knows that...but it makes me sad to know that I have to face the reality of it all, every day.

I have been so worried about how Kaden is handling everything right now. It really gets to me knowing that he can not tell me how he feels. When I said bye to him tonight and explained to him that I am going back to the hospital and RMH he signed "yes" that I need to be with sissy but he wouldn't look at me when I was talking to him about it, he just kind of stared away. It makes me sad to know that I am missing things that are going on in his life and that I am physically not there for him all of the time. But if I wasn't here I would be sad knowing that Ava would be here by herself and that she wouldn't have us to love on her and speak up for her. It is one of the most aching feelings, being torn between my two babies. I can't explain it. I wish there was an easy answer for everything.

I also feel like we will be here through her next surgery. We aren't anywhere close to being home, and her next surgery is 3-5 months away. That may seem like a long time to others...but we have been here for 3 months and like I said, are no where close to being home. I just feel like she is not making any progress. We are just stuck.

I know I have talked to some people about this, but staying in the hospital makes it seem like your life is on hold, all the while others are still living theirs. I kind of experienced that when I went home this weekend. I was able to get out and "live life" with Kaden and Nate, although Ava was stuck in the hospital still fighting. She was constantly on my mind, but getting out and doing things with my family kind of gave me back a piece of my heart...I know that probably sounds stupid but I don't know how else to explain it.

I know that this is probably all jumbled up and doesn't make all that much sense...but that is how my brain is "working" right now. It actually has become sort of a joke for Nate. He thinks I am going crazy...um, hello, what do you expect? My brain is turning in to mush. So I am sorry if I didn't make much sense...but I am telling you the truth when I say that I do not make much sense to myself either. Please continue to pray for Ava's recovery and family's strength. Thank you so much.

Thank You

Jennifer, I just wanted to thank you soooo much for Wednesday. The massage couldn't get any better and my flip flops are enjoying my freshly painted toes!!! (although, I am not too sure my toes are enjoying the weather this weekend, I kind of only brought flip flops home) So, thanks again...it meant a lot to me.

Oh, and just to let everyone know, Kaden is walking better and better without holding on to anything. At the parade he wanted to walk around more than he wanted to ride in his wagon. I can not believe how fast he is growing up!!!

Saturday, April 26, 2008

Tons of Pictures

Enjoying our day at the park.
Meeting SpongeBob.
Playing dodgeball with daddy.
Getting in on the action.
Giving daddy love.
After his haircut. It is a little messed up, but I guess it is to be expected when he moves around during it.
As you can see Kaden really needed a haircut...he is getting to be such a big boy when he gets them. He decided to balance a water bottle on his head. I had to take a picture of it. (See his boo-boo on his elbow, don't quite know how that happened. He also has a mark on his eye...I guess it is part of growing.)
Ava keeps trying to check out what is on her nose.
She sleeps with her eyes open sometimes.
Her pretty toenails.

Enjoying her mobile.
Can't a girl be upset sometimes?
After her G-tube surgery. If you look closely you can see that her hair is turning red.
My pretty girl.
Easter Sunday.
Ava and her (first) dress.
My big boy Kaden. You are so handsome, bubby.
Kaden meeting the Easter Bunny at the Ronald McDonald House.


So, now I have caught up with posting pictures. I hope you enjoyed!!!

Where Do I Start???

I guess I will start off by saying that I did come home. My parents are staying with Ava, so I was able to come home and spend more time with Kaden and Nate. Today, Kaden, Nate, my sister, my nephew and I went to the city park for the Nickelodeon thing they had going on. Kaden met SpongeBob and handled it really well. He even gave SpongeBob a kiss. I do admit I felt really bad for him because he wanted to do everything that he saw the other kids doing, but with all his equipment he wasn't able to. Nate and I try very hard to let him lead a typical life, but somethings are just a little out of reach right now. They had one of those inflatable jumping things and to top it off it was Blue from Blue's Clues...Kaden really wanted to do it but there was just sooo many kids that it wasn't safe for him and the equipment. I might try renting one for his birthday so he can experience it.

I love being at home...there is nothing quite like it. However, I miss Ava to pieces. I got sick to my stomach today because the doctor called to tell me he wanted to put a chest tube on Ava's right side (oh yeah...she got a chest tube on her left side, again, I think on Wed. they were able to get about 130 cc's out from the start). They said that there is a little bit of fluid and that there is some air near her right lung. He wasn't sure how the air got there, but anyhow, it really concerns me. I guess she is doing pretty well. Leave it to my child to do something like this when I am gone...it never fails. I worried pretty much all day. It is hard to truly enjoy time at home when you have time to sit and worry. The good thing is that the doctor is doing what he thinks he needs to, to give her a fair chance to come off of the vent. He went back up some on her methadone so we won't have to worry about withdrawals, and then the chest tubes to get rid of the fluid. Hopefully that is all she needs to be able to come off. I have so much to say about the past few days but right now I really am not in the mood. I am excited though because I have tons of pictures to post!!!! Be prepared because I am not exaggerating when I say tons. Please keep Ava and Kaden in your prayers. I think Kaden is becoming a little more affected by mommy not being around.

Tuesday, April 22, 2008

Went Well

The cath went well. Dr. Kaine said her heart was looking good, considering. So they are pretty sure that it is not her heart that is keeping her from coming off of the vent. We also know that it probably isn't her diaphragm either (although that was a good thought Karen...thanks). Her diaphragm seems to be in working condition after the doctor's read the ultrasound. So now I just hope she can come off whenever they are ready to try again. I just really want it to be a week that she hasn't had to deal with withdrawal issues, fevers, agitation...you know, stuff that she has been dealing with.

Tomorrow is my much anticipated spa day!!! I am so excited and nervous at the same time. I can't wait but I am nervous to leave Miss Ava for part of the day. One good thing is that her primary nurse will be here. I will call in the morning to see how she is doing before I leave and pray that she is having a good morning. Well, I guess by the time I post tomorrow I will be a new, refreshed woman!!!

Cath Lab

Yesterday the cardiologist nurse practitioner came up to talk to me about taking Ava to have a cath done to look at her heart more closely. They take a microscopic camera and go in to look at her heart to make sure something isn't going on that they can't see with an ECO. She was scheduled for it today at 10:00 this morning. They put her under anesthesia so she is comfortable and the procedure can take up to 3 hours or so. I will post more after the procedure is finished and I talk to Dr. Kaine (the cardiologist).

I am so tired. I stayed up doing laundry last night...which by the way I didn't have a chance to finish. When I was finally able to lay down, I feel asleep right off the bat but then there was the storm. I wasn't able to fall back to sleep until it slowed down a little.

I had a major "duh" moment. Here is how I introduced myself to Dr. Kaine...Hi, I am Ava (hearing myself hear that, I kind of stuttered but it gets better), trying to correct myself I go on to say, I mean I am Amy's mom, Ava. Well, after feeling pretty stupid I got it right. I know I have been complaining to everybody how my brain doesn't seem to be functioning anymore, but come on, really?

Monday, April 21, 2008

To Do List...

Ava is going to have quite the busy day today. After getting a suggestion about what could be going on with Ava from another mom who's baby also has a hypoplastic heart, I talked to the doctor and questioned him about it. So today they are going to do an ultra-sound to look at the function of her diaphragm. I didn't realized that a heart baby's diaphragm could get knicked or something and cause it to be paralyzed. So, although she was off of the vent for a little while, she is having some of the same signs as this little boy. I guess that with a paralyzed diaphragm your lungs will retain some fluid which would make sense with Ava's left side. Maybe her left side of the diaphragm got knicked and that is what is causing her fluid build up....just a thought.

She is also scheduled for another ECO on her heart. They want to rule out any reason she is unable to come off of the vent due to her heart. She is also getting a dye study done on her PICC line (kind of like an IV). They have been having a lot of trouble drawing blood from it, so from there they will decide if they need to just take the old one out (she has had it since 2-1) and put a new one in. So as you can see little Miss Ava will have a long day, but in a way I am glad they are doing all of this...it might give us some answers we need.

Other than that, Ava has been doing alright. She was so sleepy yesterday, pretty much slept ALL day. I would rather her be sleepy than fussy...she seems more comfortable. I just hope that she is tired because of just that, and that it is not anything alarming. Thank you all for your prayers...please keep them coming!!!

By the way...
Congratulations to my cousin Tabitha and her husband Gary. I just found out that they are having twins!!! Good luck with everything. (I guess you kind of get stuck in your own world when you are at the hospital and everybody else keeps living their lives b/c this is the first time I heard anything about it!) : ) Sorry for the delayed congrats.

Sunday, April 20, 2008

Nothing Has Changed

Not much has changed the past couple of days except for the fact that they are weaning Ava's vent again. Not so much because they are going to take her off the vent in the next day or two but because they want her breathing rate setting low enough that she still has to work her lungs herself so they can stay "strong." Other than that we continue to just hang out. The longer and longer we stay here the more I start to worry about the outcome of everything. I worry about Kaden and if he feels neglected, I worry about our financial situation, and of course I worry about Ava.

This coming weekend my parents are going to be staying so that I can go home with Nate and Kaden. The Spongebob deal at the park I guess is this coming weekend so I will be able to go with the boys. I am excited to be able to go home. I thank everybody who has offered to come up here so I can go home. It is really sweet of all of you. Please continue to keep Ava in your prayers. It means a lot to us.

Friday, April 18, 2008

Mr. Genius

Last night Nate and Kaden left due to Nate's work schedule. He had to go in to work this morning...anyhow I wanted to post this yesterday but with the stress of the day it got left out.

Yesterday, my genius of a son amazed me again. Here in Ava's room child life brought some toys for Kaden to play with awhile back, his favorite being a Winnie the Pooh laptop type thing. He loves to play with it...he signs that he wants to see "the baby" and gets here and wants his toy. Well, yesterday he was just spelling away and curiosity set in and I asked if he could spell elephant...he did (minus the "a"). I was so proud of him and after telling him once where the "a" goes he got it right every time afterwards. So he ended up taking it downstairs to the cafeteria with him. There was a mother from the RMH there and she came up and started talking to Kaden. Kaden then began to show off. He automatically started spelling words for her and then signing what he was spelling. I then told him to spell elephant for her and he did and continued by spelling cow, moo, dog, cat. She asked him if he could spell school (by the way he can) and he shook his head no and continued by spelling book, apple. She asked again and he shook his head no again, so I asked him and he shook his head no. He then went on to spell hi (then waved his hand) and then spelled bye (and waved his hand again). She asked him again to spell school, so....he spelt "NO" and shook his head no. Nate, the mother and I just started cracking up. It was hilarious. Just another way to prove this guy knows what is going on. He also went on to spell hi and bye on the elevator to people that were on it with us. What a smart guy!!!

Well, on the down side last night my night started going down hill when Nate, Kaden and I were coming back up to Ava's room before they left last night. While we were waiting for an elevator there was a girl who was about 8 waiting with her mother (with an IV pole, so probably an inpatient). Kaden, being the sweet natured boy that he is, got excited and waved hi to the little girl. The little girl acted as though she was scared of him and hid behind her mom. Her mom told her to come out from behind her and explained to the little girl that the tube was to help "the little boy" breathe. Well, I guess since the little girl didn't wave back, Kaden waved again, which in turn the little girl hid behind her mom again. The mom went on to tell her to come back out and the little girl said, "Not until that boy leaves." We ended up sharing an elevator with them and Kaden then kept to himself (I tried to distract him from the little girl's behavior), but he did wave bye-bye to them as we got off. It broke my heart. Here we have the sweetest little boy saying hi and something like this happens. I know he notices stares (which he now waves to EVERYBODY) and I think he knows that he has something most other kids don't...how he feels about it I don't know. It breaks my heart that people can not be more excepting, especially knowing that anybody would be lucky to know this little boy. I am so proud of Kaden and feel extremely lucky to have him in my life. He is the most lovable little boy and Nate and I wouldn't trade him for anything.

Thursday, April 17, 2008

Back On

As I write this, I am sick to my stomach. Ava has just been re-intubated. She has been really fussy. When she was awake she was crying until she would fall asleep again. Tonight when I was holding her she just started getting really red...EVERYWHERE. At first I thought maybe she was hot, so I took her blanket half way off. Well, her body still felt chilly to me but she was sweating and the redness did not go away. So the nurse came over to look at her and called in the doctor. The doctor said it could either be a reaction to the blood that she had received earlier or due to respiratory distress. They did a blood gas and her CO2 was high. The doc came back in and stated that she was in respiratory failure and that she needed to be re-intubated. He continued by bringing up the dreaded talk. That's right, he said that we are getting in the territory of having to start to bring up the subject of traching her and sending her home with a vent. I was very unimpressed with his way of talking to me about it. He went on, kind of laughing may I add, to say that we would be one of the first families that they have who would have two babies on a vent at home (funny?). I am sure that he was trying to lighten up the mood but geez. He also stated that they would be looking into it because he knows how "amazing" we are with Kaden and that we have "perfected" it...I do NOT want this to be the reason for her being trached. I can not believe that the "talk" has come up. I will say that it is not in stone, that he did just mention it and said that he was going to look more into other things that could be the problem. I guess just actually hearing a doctor talk it about it now has put it in to reality that it is a possibility.

I guess, I am just really frustrated because Ava still has this fluid on her lungs. No one can really tell us why and evidently does not know the solution to resolve it. It's one of those things...in my heart I am screaming you are the doctor, fix her. But my mind knows that they don't necessarily have an answer to everything. Please just continue to pray for her, she really needs all that she can get.

The Plan Was A Go

Ava was extubated about an hour ago and seems to be handling it very well (knock on wood). She is sitting on daddy's lap right now. She is soooo hungry. They had stopped her feedings at 6 this morning and are waiting to see how she tolerates being off of the vent before deciding on when to start her feeds back up. Please continue to pray for her strength and success. Thank you to all of you.

Wednesday, April 16, 2008

The Plan For Tomorrow

Today Ava has been in the c-pap setting pretty much all day. In this setting she is to do all of the work on her own. If she continues to do well, tomorrow they will try to take her off of the vent. Please keep her in your prayers.

Today, mommy painted Ava's toe nails. Ava's primary nurse brought in the cutest little bottle of fingernail polish...it was the sweetest thing to do (I am now on a mission to get one of each color 0. I love her primary. We are so lucky to have nurses that care about Ava that they go beyond our expectations. We got just as lucky with Kaden.

Monday, April 14, 2008

What I Have Learned...

I know that I have been "complaining" a lot lately...so I wanted to take this moment to say what I have learned from everything between Kaden and Ava.

I have learned that I am a lot stronger than I thought I was. I have my moments as anyone would but I am (as I have said before) so proud of what I have become from it all.

I have learned (a little too much about) patience.

I have learned faith (again).

I have learned that Nate is even more of great dad than I already thought he would be. I am so thankful that God put the two of us together. Don't get me wrong, we have our times as any couple would in this situation but it is making our marriage stronger, it is proving to us that we can get through anything together.

I have learned that a complete stranger can be your closest friend. I can not believe how many wonderful people I met. It means so much to me to have all of you in our lives. Your strength helps build our strength. I am inspired by each and every one of you and the kindness you extend to myself and my family.

I have also learned the TRUE importance of family. I have been blessed with an absolute wonderful family and extended family. I can honestly say I know how it feels to be loved and supported. I know that I can count on them to help us get through any sticky situation. I also love the fact that they are so loving and accepting of my babies. Nate and I try to let Kaden live as normal as a life as possible and our family does the same.

I am so thankful with all that we have been blessed with.



What does it mean to be the parent of a child with a heart defect?

It means going into your baby's room a dozen times a night just to check to see if he's still breathing.
It means standing over the crib to watch the chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby's face to try and hear him breathe.
It means that when you don't see the chest move and you don't hear him breathing (because your own heart's beating is drowning out any other sound in the room), you put your finger under the baby's nose to feel the air on your finger – until you wake the baby and it stirs – and you're thankful, so thankful that he's still with you.
It means feeling a huge sense of relief when he hears you and opens his eyes and smiles.
It means saying a prayer of thanks for another day.
It means measuring out his medication and panicking if he spits some of it out. How much did he spit out? One cc? Two or three? Then wondering if you should guesstimate how much more he should have and if you'd overmedicate him.

It means checking his nail beds against your own to determine how blue he is today.
It means asking your husband, your mother, or your sister, "Do his lips look blue to you?"
It means snuggling him in an extra blanket for fear he won't be warm enough.
It means worrying that even a sniffle could cause an infection that could harm his heart.
It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls his name and takes you straight back to the examination room.
It means knowing that everyday is a blessing and a gift.
It means knowing that you are the luckiest person in the world, just to be a parent.

It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.
It means praying for a miracle to save your baby's life.
It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief.
It means praying for the will to live, even if your baby doesn't.
It means your own heart knows a pain, no parent should know.
It means feeling weak, helpless, angry, and depressed because your child's fate is out of your hands.
It means feeling strong, determined, and brave because you know you have to be.
It means your love knows new unlimited boundaries.
It means your pride in your child's accomplishments is unparalleled.
It means your pain has taught you a deeper sense of compassion than you ever imagined.
It means we are all united by the same feelings.
It means that we all know the mixed up emotions of dealing with death – but more importantly of living with life.
It means that even though we are strangers, we are more to each other than friends could ever be.

By Anna Jaworski (1996)

Sunday, April 13, 2008

Loving On Ava

Today I was fortunate enough to hold Ava a couple of times (of course on a pillow since she is still intubated). When I came in today the nurse had Ava dressed all in pink. Ava was wide awake staring at her mobile. She loves this mobile (it is one the hospital let her borrow). She is just so darn cute. She has been staying awake more throughout the day. When I cleaned around her mouth with this green sponge thing she just smiled and smiled. She enjoys getting her mouth cleaned. I think it feels good to her to have some liquid in her mouth. I can't wait for Nate to be able to see her smile. I don't think he has had the chance to see her beautiful smile.

The bacteria that grew from her line also grew back in the blood they drew by sticking her (so they have two different sources with the same outcome which makes it confirmed). I can not remember what they called the type of bacteria that grew back but the nurse said that she is pretty sure it is some form of staph. Ava's temp has been up and down all week, but they have her on antibiotics. Hopefully they caught it soon enough and that it will be taken care of fast. Kaden had staph more than a couple of times when he was here and I know from experience how much it can set a baby back.

So, I don't think I am going to be able to go home anytime soon. Nate can not take off of work and I do not want to leave Ava up here by herself. I think I just need to suck it up. It just gets really hard being up here all of the time. Saturday SpongeBob and Strawberry Shortcake are going to be at the city park back at home so Nate is thinking about bringing Kaden to see them. I think he will have a blast. He is just now really getting in to SpongeBob (ok, I don't know if that is two seperate words or not). I wish I could be there to see his reaction but I think I will send the video camera home with Nate so he can tape it for me.

I really need to post recent pictures, I just don't have the right cord to do it.

Saturday, April 12, 2008

Just Mommy and Ava

Nate left last night. Kaden stayed up here with me because my parents came up today, so they just took him home with them when they left. It was nice just being able to cuddle next to Kaden like we did at home. He is becoming such a big boy. Last night he took 8 steps without holding onto anything. I am so proud of him. I am predicting by his next birthday he will be on the go, without his walker. That gives him about 4-5 months, although I am not putting a limit on it. His balance is getting a lot better too. One step closer to being able to play golf with daddy.

Ava is doing alright. I was not here yesterday when they extubated Ava. Kaden and I were at the RMH. I thought they would do it in the afternoon, but they decided to do it pretty early. Nate walked in right after they had extubated and told me that she was working pretty hard. When I called up here just to check on her the nurse said that they tried extubating and had to re-intubate. That made me sick to my stomach. I just started wondering..."What if she can't come off," "Is she going to need a trach," "Is she going to need to be on the vent (like Kaden)?" I am in no way saying that this is what is going to happen, the doctor's haven't even discussed the possibility (knock on wood). I just can't take this anymore. I was ready to go home a month ago and to still not even have a clue as to when we can go home is driving me nuts. I know when she comes off of the vent things will get better, because I will be able to hold her again, but until then... Another thing that has been bugging me is us deciding on the g-tube. It seems like this surgery has set her back. I know they said that she would need it and that she needs the fundo, but were we too willing to accept that? Should we have fought to stay away from another surgery? I just want to pick her up so bad. It's one thing to sit up here at the hospital for 10 weeks now (who's counting), but to sit up here and not be able to hold my baby when I want and to not be able to comfort her when she is upset is a whole other ball game.

I have been thinking about finding a way to go home again for a couple of days. To go back to my old routine. Nate really doesn't have much time built up to come up here and he wants to be able to take off when she does comes home. I think though, that I might try to talk him into switching places again. We'll see...

Well, my baby girl is fighting sleep right now. I will post more later, I want to see if I can help her fall to sleep.

Friday, April 11, 2008

Infection

One of Ava's blood cultures came back positive with bacteria. It takes a whole 72 hours to actually know what it is though. So that could explain the high temps. Poor baby girl. That is one thing we have learned being here with Kaden and now her...if it's not one thing it's another. It just gets so frustrating and all I want is to take a "healthy" Ava home. As each day passes the more I worry about not getting to go home anytime soon. I could not imagine staying here for another month or so. I have more to post, but Nate and Kaden are getting anxious to leave and go back to the RMHouse. I will try to post later.

OFF THE VENT NOW BACK ON

The doctor decided to take Ava off the vent this morning around 0800 hours. Ava was really struggling to breath and I was trying to calm her in hope she would stay off. It kills me to see her struggle like this. Around 0850 hours the doctor told me her gases were not good and I would have to leave so they can put the tube back down her throat. I am so against rushing kids to get them off the vent in return to just put them back. I understand you have to attempt, to find out, but there are times when I dont understand what a doctor is thinking. Ava had a rough day yesterday and that was on the vent. Her chest x-rays dont look any better and still are wet. For what I can remember everytime Ava's lungs are wet, she struggles with breathing. I dont understand why a doctor would go ahead and make that decision at my baby's expense. Ava struggles with breathing everytime her lungs are wet. I am a laid back guy and let the doctors do their thing but in my opinion the doctor ignored what Ava has told them in the past and made a bad decision, risking my daughters health. Yes I am a bit upset.

Ava's Daddy

Wednesday, April 9, 2008

video

I figured out how to make slide shows finally. I used pictures that my grandparents sent me from about two weekends ago. These pictures are of Kaden at grandpa and grandma's house showing my grandparents how he can stand on his own and take a few steps. However, it looks like most of them are of him grabbing on to somebody. He is so silly, he will do it the first time you ask and then after that he gets kind of nervous. One day I am sure we will be chasing him around while he is getting into things that he is not suppose to be in. I am so excited that I figured this out, now all I need to figure out is how to add music to it. Right now I have the music that goes with the blog itself, so I guess that is good enough.

Ava is doing well. She is still hanging out on the vent and not too much has changed. Nate and Kaden are coming down tonight!!! Kaden will actually get to stay an extra day because my parents are coming down Saturday, so he will just go back with them then.

Tuesday, April 8, 2008

So...

I am not going to go overboard with the difference with yesterday and today. Last night her temp reached just over 103. She ended up going to sleep and slept forever. She slept through a catheter, being taken out of her bed to be weighed, everything. I felt absolutely horrible.

Today I came in and she looked better. She is wide awake and not nearly as warm as yesterday. She is just finally falling asleep after being awake ALL morning. They started weaning her vent some....sooooo, who knows what is going to happen with that. Well, not much more to report other than...GO KU!!! That's right KU won the Final Four!!!!

Monday, April 7, 2008

Running A Temp

Ava is running a fever. So far it has gotten up to 102.6. They did cultures a few days ago (when her temp got a little high) and nothing grew back, but now that she is running a fever they decided to do it again. I wonder (and hope) that it is from withdrawals and not an infection or anything like that.

She has been pretty fussy today. It is very hard to watch and breaks my heart. I wish I could just pick her up and rock her, all I really can do is just rub her head and talk to her...which hasn't seem to help much today. She did however, just get tylenol along with her scheduled ativan...it seems to have made her comfortable because she is sleeping soundly, thank goodness. My poor baby...I hope for her sake all of this gets resolved soon.

Sunday, April 6, 2008

Someone I Love...

Someone I love... relies on me in ways you will never understand.
Someone I love... endures pain and challenges that break my heart.
Someone I love... is unable to advocate for themselves for things that most of us take for granted.
Someone I love... will never have the opportunities that every child should have.
Someone I love... will need unconditional love and support after I'm gone, and this frightens me to the core.
Someone I love... encounters pity, stereotyping responses and prejudices at every turn because they look, act and/or learn differently from others.
Someone I love... has needs that require me to allow outsiders to have power and input in areas that should be mine alone to meet.
Someone I love... will continue to look to me for everything in life long after other children are able to assume their place in the world.
Someone I love... has needs that require more time and energy than I have to give.
Someone I love... has needs that have become the driving force behind major decisions my family makes.
Someone I love... has changed me in ways I will never be able to accurately describe.
Someone I love... has taught me about love and the really important things in life.
-author unknown

I again found this from http://www.breuerfamily.com/

I really like this poem and wanted to share it with all of you. However, I do disagree with the line that says "Someone I love...has needs that require more time and energy than I have to give." I may have thought that prior to becoming a mom, but know faced with the reality of everything...I know that I can make enough time and have energy for my babies. Life is never easy, but you have to figure out how to take it all in and make do with it.

Waiting Game...AGAIN

First of all, Ava's heart function looked good!!! That is good news. However, Ava is still on the vent. They said maybe tomorrow...but the key word is maybe. I am not a big fan of that word. I just want her off of the vent so bad. I feel awful for her. She just seems so uncomfortable and I think she wants to be held as much as I want hold her. She is still pretty puffy from all the fluid and not a happy camper. She is either sleeping or up and fussy. My poor baby girl.

On a different note, I haven't posted Kaden's new trick. He can take a few steps without holding on to anything. He gets it down the first time we have him do it, but then he starts getting nervous or something and just lunges for either Nate or I. But each initial time we have him do it...he does. He is becoming such a big boy!!! I am so proud of the determination in this little guy. He doesn't let anything hold him back. He is also into name calling. I don't know if that is something to be proud of but it is cute all the same. He calls his daddy "cry baby daddy" (using sign of course) when he beats daddy up. He is such a funny little guy. I need to start video taping all the things he does because he is growing up so fast. If I learn how to post video, "maybe" I will post it on here. Anyway, please continue to keep Ava in your prayers.

Saturday, April 5, 2008

Congrats!!!

Congratulations
Jarod and Carla
Kaden's primary nurse from Children's Mercy got married today. Unfortunately we were not able to attend but we were there in spirit. We are so happy for you guys and wish you the best. Congratulations!!!!

A Little Frustrated

I want to start out by saying that I don't mean to sound so down, but I am getting a little frustrated. Not at anyone in particular, just at this whole situation. I would NEVER wish any of this on anyone. I just want to be able to go home...too.

I guess I just don't understand how it seems like everyone else heals/recovers so quickly. Ava is in a double room, meaning that she ends up having roommates (most of which are infants who have had heart surgery themselves). Lucky for them they are quickly taken out of the PICU and get to go to the floor...preparing to leave for home!!! However, I get to see this progress in others babies, but not in my own...which is making me a little frustrated. Don't get me wrong...I am thankful for Ava's progress so far and happy that these other babies are recovering, I just want to be in the situation that our neighbors seem to be in and not in the same situation that Kaden went through. I love and am thankful for the fact that Ava is as strong as she is and she still fighting. I just get worried that by the time we are ready to leave we will be on or way back up for her second surgery. I know that there are other things to worry about, but with Kaden it would be too hard to be up here for a longer period of time. I just can't believe it has already been almost 9 weeks and time keeps ticking.

Ava is still on the vent and we were hoping that she would be able to come off today...but she has too much fluid built up. They are going to look at her heart and make sure that it is still functioning right before they decide what they are going to do with the extra fluid. I will keep you updated on that. Right now she is just sleeping away. I think I remember hearing that they were going to start feedings today, through her G-tube. So I guess that is another step forward.

I am sorry for posting my frustration. I know that I have a lot to be thankful for. I think my emotions sometimes get the best of me. Thank you for "listening." Hopefully I will be able to post something more positive later.

Wednesday, April 2, 2008

update

Ava is doing well. She received her g-tube, however they put just a tube in (different then with Kaden) and in 6-8 weeks they will switch it to a mickey button. She is on the vent still (as predicted). It makes me sad to know that she will be on it for a little while, especially after having the morning that she did. Almost everyone who saw her this morning said something about how alert and good she looked.

Kaden and Nate will be down tonight, but they will be leaving later than usual. I can not wait to see them. I found out today that Kaden has class pictures next week...how cute is that. I am so excited to start the collection of class pictures (like my parents did with us). I just hope that he looks at the camera and keeps his hands off of his face. I have noticed lately that he doesn't like to smile for the camera like he use to. I either get a stare or both of his hands are on his face. When we tell him to say cheese...he use to sign "cheese" and after telling him that he needs to smile, he started putting his hands to his mouth. I don't know what to think, maybe I took too many pictures of him in the past : ).

Surgery Day

Ava just left for surgery a few moments ago. She looked so good this morning. She was very awake and alert. I came in this morning and she woke up shortly after so I picked her up. She was just smiling away today. I tried again to capture it on my phone so I could send a picture to daddy and I think I got part of a smile. She was trying to coo and was just very alert. I am glad that she is feeling so well this morning (it kind of makes me sad though to put her through another surgery). I really think that she will come back up with a ventilator and will probably be on it for a few days, who knows for sure though. My babies seem to never fail to amaze me.

I am kind of nervous, I have never been by myself waiting for one of my little ones to come out of surgery (although daddy and Kaden will be here tonight). I have no one to keep me busy, so my thoughts are kind of going right now. I am excited though...this is just one step closer to getting home. I will keep everyone updated.

My grandma is having surgery tomorrow as well. Please keep her in your prayers as well. I love you grandma and will be thinking about you tomorrow.

Tuesday, April 1, 2008

Ava gets her g-tube first thing tomorrow morning. Please keep her in your prayers.

Just Hanging Out

We are still waiting to hear when Ava's surgery for the G-tube will be. It is suppose to be this week sometime, but we have yet to hear the exact date. I am kind of frustrated, I haven't talked to a doctor since Friday (maybe Saturday). I am trying not to get impatient because I have noticed that it is really busy around here.

Today Ava had music therapy for the first time and seemed to really enjoy it. The therapist was singing and playing a guitar. Ava was just looking at her, definitely paying attention. It was too cute.

I really do not have much to report right now. Ava is just kind of hanging out. I haven't heard much of anything new...so when I do I will let you all know. My hopes are for Ava to get her G-tube this week and for her to recover quickly and successful so we can go home soon.