I did take Arianna in to see the orthopedic doctor on Tuesday. After he looked at her foot, ankle, and spine he felt confident that this (ankle pronation) is nothing to be concerned with "right now". I am completely fine with that news. I still need to go get her some better supportive shoes but I just LOVE her little Nike's so I haven't done that yet.

We had her speech therapy after our appointment and the first thing the ST asked what how often Arianna is allowed to use her paci. I told her all day long. She asked if there was any way to just limit that to bed time. To be honest with you I am ready to ditch the paci myself so that was all the motivation I needed. She said because of her speech delays the paci is really not going to help with her speech. So.....yesterday I didn't give her the paci ALL DAY and man was that a LONG day. She cried and cried but I didn't give in. Then this morning I let her have it while we laid in bed watching cartoons but as soon as it was time to leave the room I took it away from her. She cried for a second but that was about it. She did ask for it today but not as much. I just kept distracting her by playing with playdo (which is a new word she can say!) When it got closer to bed time she started getting fussy and I was walking to get her paci when I realized she had already fallen asleep in my arms. So looks like she doesn't need it to fall asleep so we might actually be completely done with the paci. That would be great! But we'll just see how she does the second we get in the car cause she always gets her paci in the car.

I do have to say after just two days without the paci she is eating better, saying more words and babbling more, and even sleeping better. You think there is a connection? I do!

So the past few days Arianna has become such a dare devil. She is trying to climb on everything, including the top of the couch. Here is what she discovered she could do last night.

Such determination in her eyes..

I haven't taken a bath picture in awhile so here one is...

You can barely even see her scar!

This afternoon my heart momma friend came over again and this time Arianna LOVED playing with the baby. "Baby" is one of her new words so she kept saying it all day. I have to tell you how nice it is to be able to hang out with another heart mom. She has been such a help with me over the past few weeks with the support group that I asked her to be my Co-Coordinator and she said YES!!! She is also putting together our website for our group and it seems to be coming together rather nicely.

Check out Arianna eye balling baby Kira's paci...

Let me have that...

Girls just hanging out watching "Yo Gabba Gabba"

Hey Isaac, what to come over and watch it with us?

I have started letting Arianna pull a chair up to the kitchen counter and help me with whatever I'm doing at the moment. She loves helping wash her cups....it's more like splashing water all of the place but she loves it. I also let her help me cook or bake...of course nothing that can hurt her. She normally does the mixing and pouring. So today I was in the kitchen and heard her drag the chair over to the counter. I turned around and she had climbed onto the chair by herself and was standing on it in the middle of the kitchen! I was so excited because I've been waiting for the day that she could get on a chair like that by herself but kind of freaked out after wards. So I pull the chair up to the counter and she starts climbing onto the chair again but this time slips and falls, but thanks to my cat like reflexes since becoming a mom I grabbed her by her arm before she hit the ground. Phew!!! I have to watch out with her now that she is climbing on everything. I've waited a long time to finally say that. :)

So here she is helping me with dinner tonight...

So now that all the nice and happy stuff is out I just have to tell you how saddened I am to hear that sweat heart buddy Colin has earned his angel wings this week. My heart just breaks when I hear of a child leaving this earth too soon. He has been loved by so many and will always be in my heart.

So I've had a very emotional week after watching a heart baby die in the hospital and finding out about Colin. It just breaks my heart that so many children have to endure so much and then loss this fight against CHD's. I am scared more today about Arianna than I have been in awhile. I have known soo many heart kids that are doing fine then all of a sudden their hearts just stop. And after the incident the other morning thinking Arianna wasn't breathing....I just feel like this is such a burden to carry every day. I have been waking up every morning since Friday just crying because I am so blessed to have another day with my daughter. I am so scared that one day I will wake up and she will not be with us. My whole world has changed since we found out about Arianna's heart and there are days that I'm happy we did and there are days that I wish I could just turn the hands of time around and never start on this road. I know am a better person today than I have ever been in my life and I owe that all to my daughter. I'm helping many families through our support group and I feel like I have a direction in life now. I may not be a scientist, a lawyer, or a doctor, I'm just a heart mom that is trying to make a difference in my local heart community.

Sorry for such a sad ending to such a wonderful post but I always feel better after posting these things on here. I just have to learn to deal with all these emotions and fears. I still find myself just trying to take it one day at a time.

I think it's time for a vacation.....maybe one day right?!?! I'm still thinking the heart mom vacation would be an awesome idea. Maybe Vegas since Kathy is already there! :)

My thoughts tonight...

I try not to live in fear of what the future holds, but live every day to the fullest. When I start to think about the sad things in life I just push them aside and tell myself..."Not today". Well I've been telling myself that all day and I just can't stop shake it.

I find myself letting Arianna get away with alot more than I should. I can't stand hearing her cry or watch her get frustrated. The doctors tell you not to treat her any differently, to raise her like you would any healthy child. But I can't. I thought after her heart surgery things would be different...maybe even normal. I guess I have to accept the fact that we will never have a normal life.

As she gets older I start realizing how uncertain her future is. I don't even know if she will be allowed to attend kindergarden. I get so frustrated because winter is almost here and with winter comes isolation. I thought we would only have to do this for the first year and here we are going into our 3rd winter....in isolation. Today at the doctors we talked about her getting Synagis shots for this upcoming season. Insurance companies won't pay for a child over 2 years old to get these shots and Arianna will be 2 in November. I am concerned because this little cold has caused her probelms so what would a winter cold, or even worse, RSV do to her. The pedi told me she is scared about Arianna as well....not something you like to hear from your doctor. We are going to try and get her approved for another year but it's unlikely we'll get it. So what am I suppose to do...keep her in isolation AGAIN? Or let her go out in public with the risks of catching something that will put her back in the hospital, with an even higher risk of catching RSV. I just don't think her lungs could handle RSV right now and that terrifies me.

I just wish things were normal. Tonight I was having the best time with Arianna. She was doing something so silly and cute and I started crying. Why is it when I find myself being completely happy, looking into my daughters eyes, I get so scared. The older she gets the more attached I get and I know we will have our rough days ahead. I hate this CHD life and all the heart ache that comes with it. I just want to live like every normal person and not worry if a common cold will kill my child, or a visit to the dentist. I want to let her play with other children at church, go to our support group meetings, go to the children's museum, and do everything else she hasn't been allowed to do. I know when she gets older I'll have to explain her health issues to her and that breaks my heart. No child should have to carries such worries with them.

Sorry for such a negative post, I guess I just needed to get this off my chest. I know so many of you have felt this before and I'm sure I'll push it all back inside and go on like everything is okay.....because that's what mothers do.

Visit to the doctors office

We took Arianna this afternoon to get her varicella (chickenpox) vaccine. I was really nervous about it so Robert went with me. Thanks honey! Arianna was already cranky on the way to the doctors because she is working on getting another tooth, so I knew she would be a mess after the shot. She cried and wasn't very happy when she had to go back in her carseat. We stopped and got her some french fries and a shake but she was only into eating 2 french fries then fell asleep. She is sleeping right now and I'm constantly checking on her. They said to keep an eye out for any fevers or rash, which can be anytime up to a month after vaccination...WOW...thats a long time to look for side effects. I guess it just takes a long time for the immune system to react to the vaccine. I'm still very anxious even though everyone tells me I shouldn't be. I have cried more today than I have in awhile, which I'm trying to understand why. I know I should be jumping up and down with excitement that Arianna was able to get these vaccines but I'm just more nervous than anything. I keep getting nervous that she is taking such a long nap, her breathing is shallow, etc. What is my problem?!?!?! Why can't I just enjoy life and not worry about all these things!!! Even the nurse giving the shot kept reassuring me that Arianna has good t-cell function and I should really try to find peace with that. It's hard because we're not just dealing with her immune system but her lungs and I know right now her lungs need to heal. No, I don't want to keep her in a bubble, but I also don't want to have her in the hospital every month. Everyone comments on how well she is doing and that is contributed to her being home most of the time. It's like people don't get it sometimes. They think just because she is doing well at home she would do well out in public. I get her out from time to time. We go to the pet store, Target, walgreens, families houses, restruants (okay only a few times), but I'm just not comfortable taking her everywhere. Why do I still feel so different? Why does my heart ache so much for my little girl? Why am I sitting here crying, when I should be happy that Arianna IS doing so well. I don't expect any of you to answer these questions I guess for once I felt like I need to get my true feelings out.

Consult with doctors (LONG POST)

I have honestly dreaded sitting down and writing this post. It's not that it's bad but that I don't want to deal with the flood of emotions I have going on right now. Well I better start from the beginning...

So we arrive at the hospital for our consult with the pediatrician, pulmonologist, and cardiologist. We meet our pediatrician in her office and she escorts us to the conference room. My mom went with me, like always, cause she's the greatest! I wouldn't of been able to keep up with Arianna and listen to the docs without her. Plus she is a second pair of ears in case I miss something.

So we are the first in the conference room and I start to ask the pediatrician how much she knew about immunology. Last night I was trying to review her most recent labs and have to tell you how frustrating it is. Immunology is one area I absolutely don't understand. Since I don't have much faith in our immunologist it makes it very hard for me to feel she is getting the best of care. Makes it even harder since I'm always told this is the best doc to have and we are honestly thinking of switching back to the original immunologist. (If you can't tell already..I'll be all over the place in this post.) So back to the meeting... The pulmonologist and cardiologist arrive and our pedi starts by introducing us to the pulmo, and surprisingly enough he remembers us from when Arianna had her surgery. I start out by giving him a some what brief history of Arianna. I also expressed my concerns I have with the other pulmonologist, which are the following: not calling with results, doing bronchoscopy before a CT when clearly that is NOT the best thing to do (makes it hard to see what exactly is consolidation in her lungs), leaving it up to me whether to give her the Flovent inhaler, chalks everything up to Arianna's OHS and multiple anesthesia's, and tells me we no longer need to follow up with pulmonary. (This is the doctor who is married to our immunologist...beginning to see the picture! UGH)

The pulmo first asks the cardiologist to explain Arianna's cardiac function. Our AMAZING cardiologist (can you tell I just LOVE this guy!) explains her function: no residual ASD or VSD; trnsannular patch for pulmonary valve; created monocusp valve for PV, which is no longer there which means it is free flowing (pulmonary insufficiency); generous right ventricle hypertrophy with no signs of heart failure. He goes on to explain Arianna has tolerated all her weanings from Lasix...which I interrupt to tell him she has very puffy eyes every morning. He gives me a shocked look...but goes on to explain this is just because her kidneys are trying to get used to the new volume and should balance out soon. From a cardiac standpoint...this is the best news I heard today...Arianna is doing GREAT!!! He said she will need a pulmonary valve placement done sometime but not in the immediate future.

After the pulmo heard this he felt comfortable saying the lung issue is not being caused because of her heart. Good news...but where does that leave us? He reviewed her CT last night and told me it's hard because the CT was done right after the bronchoscopy and since they do a lavage (fill the lungs with liquid, then suck it out) it makes it look consolidated on the CT. This doesn't account for all the consolidation but it didn't help it any. I asked why this was done that way and he said it must of been a scheduling issue. So for anyone going to have both these tests done together...make sure the CT is done BEFORE!! Wish I would of known that beforehand.

He ruled out aspiration. YIPPEE!

I ask what caused her respiratory distress in January and he answers honestly, which means alot to me, that he doesn't know. It could of been the chronic illness she had a month prior but can't be certain if that's the case. He said Arianna has basilar (lower lobes) lung disease. He said of all times this is the best time to have this because she will produce more lung tissue over the next couple of years. His hopes is that the damaged areas will recovery as her new tissue is made. He mentioned the immunologists most recent report showed she has a low lymphocyte count, which he never mentioned to me...so I'm pretty upset about that. He also mentioned his colleague gave Arianna a diagnosis of asthma. This really upsets me because this was NEVER told to me. We are told basically to keep an eye out for wheezing and if she gets a cold to start her albuterol treatments. It may very well be something we just have to treat in the winter months, but once again we're not sure. We were told to consult with him before going on any trip that would require her to go higher in elevation, even Mount Lemon would be a concern. He said her sats would drop and she would probably not be able to walk or eat...so I told him we just won't go anywhere. This is sad for me, because I've been waiting to take her to the Rose Canyon Lake to go fishing ever since she was born. My grandfather even bought her a fishing rod months ago, which has been sitting in the closet. Just another thing we won't be able to do...but we'll find other places to take her! Lets see...anything else...I think that covers most of it from the pulmonologist. Oh yeah...we follow up in 6 months.

When we were wrapping things up I start talking to our cardiologist about something I discovered last week while watching Discovery Health...I'm addicted to that channel. LOL! There was a 9 month old baby girl who had a pulmonary valve placed in the cath lab. For those who don't know...we are hoping that research would get to the point where these valves could be done through the cath lab, which would elevate the need for multiple open heart surgeries. We have been praying that science would get to that level and Arianna wouldn't need to have another invasive surgery. I found the article on the Stanford website to make sure this was correct information. Here is the article if your interested. He told me he was unaware of this happening with children this young and wants me to forward the article to him. He cautioned me about where I get my information, but once I told him it was at Stanford he told me he is friends with on of the doctors in the cath lab. I'll be curious to see what he thinks after reading the article. There is hope for the future!


Then, once all but the pediatrician leaves I begin to discuss my concerns with her about the immunologist. After several minutes of talking she asked if I would mind if she made a consult for all three of us to talk, just like she did today. I thought, "GREAT!" I told her I don't want to step on any toes but I really am thinking of leaving this doctor, but know he is the best and want to try to make this work. She is very interested in learning more about immunology herself...and this will be the way she gets us into this consult without the doctor thinking I'm pulling the pedi in because I don't trust him. She then mentioned Arianna is her first DiGeorge patient and she is wanting to learn all about her sydrome along with me. She has treated DiGeorge kids in the hospital setting but says it is alot different when you follow the child there entire life. I feel so blessed to have her working so diligently with us and being such a great advocate for my daughter and myself.

So...where does that leave us...we are told to still stay away from large groups of children, church, daycare, any who is sick, etc. It would of been beneficial to have the immunologist attend this meeting today but that was thought of too late. Our pediatrician did asked, "When can I start to treat Arianna like a normal child?" And basically the answer was led back to..."keep doing what your doing." We may never know WHEN or IF we can treat Arianna like a normal child, but we can give her the best life possible. It truly breaks my heart that I cannot take her to church and enjoy a Sunday morning service like most people, let her go to the toy store and pick out a toy, attend our support group meetings, and so many other things I would love to do with her. But we will make the best of our situation and remember that God is in control. The doctors made it sound like we should continue this path for, at least, the next year. That is just a small amount of time when your looking at the big picture. I had a vision tonight of Arianna being in her early 20's, sitting down for tea, talking about her life as a child and all that she has been through. She looked at me straight in the eyes, as I cried and explained to her how horrible I felt for never being able to take her places that most children could go....and she looked at me with the sweetest face and said, "Mom...I don't remember those times so don't worry." I guess when it boils down to things, she really won't remember these first years. It's us parents who go through the emotions and struggles of adjusting to our new 'normal'. Then I sit here and look at a beautiful little girl who has the energy to run around the house screaming and I just thank God for all that He has done. I'm so thankful that she is even alive today. So many families lose their children due to CHD's or other medical illnesses. I have to be thankful I even have Arianna here with me today, to love on. Who cares if he have to spend SO much time at home. One day when she is a teenager I'll be looking back wishing she was this little baby who couldn't go anywhere, just to get a few minutes alone with her. I know we all have our areas we struggle with and I thank God that he has shown me the bigger picture. I appreciate SO much but sometimes I just hate MY situation...no matter how big or small it may seem to others. I just wish I had a NORMAL like everyone else. I wish Arianna didn't have a genetic condition that could possible be passed to her children. I wish she could go on play dates, attend Mommy & Me classes, or even play at the playground. I guess I feel like I'm still mourning for losing the 'healthy' child I thought I would have. I know that God has a plan for her and even though it wasn't the plan I was hoping for, I know she will touch many lives along the way.