First Ponytail

I have been waiting for this day for a long time. Arianna can finally put her hair in a ponytail! She looks so adorable I just had to share a picture with you all. Hope you enjoyed it as much as I did...if that's even possible! :)

Not much else going on. For those who are curious, I did just fine yesterday leaving Arianna all day. I have to admit it was kind of nice to just get on the freeway and go without all the whining and crying. Don't get me wrong, I love my baby girl but sometimes a little alone time is good.

For whatever reason Arianna just refuses to eat anything but fruits and veggies so I'm getting a little irritated about that. Well I have to go ATTEMPT to feed her dinner. Hope you all had a wonderful weekend!

Frustrations

I forgot to mention that I received a call this afternoon from the immunology nurse and she asked which lab we took Arianna to for her blood draw, I told her it was the main Labcorp because this test is so special no other lab in town could draw it, then she tells me that Labcorp can not find her labs. Are you kidding me…they did this to us last year. It took them 3 different times before they got it right. I really hope it was a mix up and we won’t have to take her back for another blood draw. This is just so frustrating to me because Monday will be 3 weeks since we drew these labs and I waited to call till exactly 2 weeks because I knew that’s how long it would take to process. I really wish people knew how to do their jobs right so my baby would not have to be poked so many times. I’m normally a nice person but when you’re poking my baby I have to draw the line somewhere.

I’m still waiting to hear back from her pediatrician to discuss the MRI situation. I’ve also noticed that Arianna’s lower back pops a lot. I don’t know if that matter but it’s something that I’ve picked up on and I’m wondering if that has anything to do with her extra lumbar vertebra or scoliosis. Who knows…maybe it’s just a normal back popping thing, but when you’re a heart mom…nothing is normal to you.

"I love you"

The highlight of my day yesterday was when Arianna tried to sign "I love you". I was crying and the whole nine yards. I can't wait untill the day that I hear her precious little voice tell me she loves me. Then right now we were sitting at the table...attempting to eat..and she looked at me with the cutest little eyes and signed "I love you". She just melts my heart!

Speaking of signing she has picked up another new sign, "no", which I'm hoping she won't use all the time. And come to think of it she signed "outside" for the first time this week as well. I am always amazed when I see her signing her things, she is so smart!

I'm getting a little nervous...tomorrow I will be heading to Phoenix for an all day meeting for the support group. I am getting the opportunity to meet with some really great people who oversee our program but this will be the first time I am this far away from Arianna. I am leaving her in good care but I'm still getting nervous. It's one thing to leave her with family for a few hours but to actually be going out of town is a little different. I know everything will be fine but I can't help getting a little nervous. Well I better go, I'm staying at my moms so I can get an early start in the morning.

16 months old!

My baby is 16 months old today! She is more ambitious than ever and becoming very brave. Just last night I was sitting in her room, folding laundry, when I turn around from putting some clothes in the dresser and there she was sitting on top of the basket full of clothes. I get her out and distract her with some toys while I put the rest of the laundry away and when I turn back around…there she was sitting in the empty laundry basket. Man…I have to keep my eyes on her 24/7.

Still haven’t had to put the O2 on, which is a good sign. She was actually eating breakfast and satting at 97!!! Her eating isn’t going that well but the past 2 days she has really been into drinking her milk and shakes so at least she is getting some kind of calories in her body. I tried to feed her pieces of a grilled cheese sandwich for lunch and she actually ate 1 small piece. I was estatic!!! This is a child that hates bread and melted cheese, so this was a huge success for us! I swear this child would eat fruit all day if I let her..but getting her to eat something full of calories is a chore. I’m just happy to see her willing to try new things, no matter if I have to go to the extreme to get her to do it.

I did put a call into the immunologist office yesterday to see if her blood work was back but still haven’t heard anything yet. I’m hoping to get the results by the end of the week.

I also put a call into the pediatricians office to ask about having a pediatric neurosurgeon review Arianna’s MRI results. Since we found out that she has congenital scoliosis, I joined the yahoo support group and found out that a lot of children with tethered chords, were missed by the regular radiologist and it wasn’t until a pediatric neurosurgeon reviewed the MRI that their tethered chord was diagnosed. Some of you may think I’m crazy, that I should just be happy with the results that I got. I am…believe me, I don’t want something else to deal with but I have to make sure the correct person reviews her MRI so I can be confident that nothing was missed. I don’t want to get years down the road and find out I should of pursued this further. So that is the next thing I am trying to get done.

Well gotta run…little one just woke up from her nap and she is not a happy camper.

The Story of Brandon & Thomas

I have met an amazing heart mom, via the internet, who helped start the organization CHIfund

Not only is she activly involved but her 15 year old son, Brandon, who was born with several congenital heart defects, is just as involved. He has created a video, along with his best friend Thomas, in hopes that his story will help and encourage other families and children effected by heart disease.

The Story of Brandon & Thomas

Easter 2008!

Make video montages at www.OneTrueMedia.com

We actually got out the house

Just had a minute and wanted to share these pictures from today. We had lunch with Grams at work and Arianna enjoyed the fountain outside.

The picture below shows her signing "water."

Hope you all have a wonderful Easter!

Won't be getting rid of the O2 quite yet

So the eating still is back to what I would like it to be but she is at least eating a little bit. This morning I checked her pulse ox when eating – cause she was not eating well and hardly willing to put food in her mouth – and she was running in the low 90’s. I decided to give her a little O2 and immediately she calmed down and stayed in her chair for 10 more minutes and ate a bit more. It seems to me that she gets irritable and does not want to eat when her sats drop below 94. It’s almost impossible to get her sats when she is playing so I just took her off the O2 and continued our day. We went to see Aunt Lissa, which was nice to get out of the house for awhile. She seemed fine, ate a little bit of macaroni and cheese while we were out, then on the way home she refused to drink her milk. She cried herself to sleep in the car (this is still SO hard for me to see, but I can not give in every time and stop the care like I used to) and when I got home I checked her sats while sleeping and they were at her usual 91. After 30 minutes I heard her alarms going off and she dropped to 87 but came back up to 90 after a minute. The weirdest thing I’ve noticed is when she lays on her right side her sats are lower than when she is on her back and when she is on the right side they get even better. I’m no doctor but I’m curious why this is. I was beginning to second guess myself about having these tests done but to be honest I really want to know what is going on and finally put my mind to rest.

I did speak with the pediatric nurse at our primary clinic and she is going to bat for us with the insurance company to get us approved for on more synagis shot. Thank God! The fact that she is going to be having tests done in the hospital is enough reason to make her want Arianna to have these shots. She is supposed to call me next week and let me know what the insurance company decides. I’m so happy…not like I want my daughter to have shots but its for the best.

Well…let’s see…that’s pretty much it I think. I’ve been staying pretty busy with the support group stuff. I’m meeting with UMC’s NICU manager on Monday and will provide them with material about the group to have available for families in the NICU. I’m still working on the other wards. I remember how scary of an experience it was to have just given birth to my daughter who had several heart defects and not know what the future would hold. I want to make sure these families have the resources available to them when they need it the most. I really wish there was something in place for us when Arianna was born. I have built such wonderful relationships with all you heart moms in cyperspace and want to offer the same kind of support to the local heart families.

Life is good

Aren't they adorable!!!!

Arianna had her friend Lexi come over yesterday for a playdate. I don't know who had more fun...me or them. It feels so good to be around friends since weve been couped up in this house for weeks. Thanks Anita for everything!

Here is the 'cheese' smile!

Not much going on around here but figured I'd post some cute pics. I did have an upsetting phone call this afternoon. The RSV clinic called and I figured it was to confirm her appointment for tomorrow, oh no, they said we weren't approved for anymore RSV shots. WHAT?!?! How can you just stop us in the middle of RSV season..well actually the end, but still. We have had one of the worst RSV season here and with the upcoming tests at the hospital I won’t feel comfortable unless she gets these shots. They said they sent the paperwork in last Wednesday but never heard back from the insurance company. So I call the insurance company and they say they never received any paperwork. UGH!! So I call the RSV clinic back and tell them this only for the lady to tell me, “Well I DID send the paperwork in.” I wanted to tell her, “Do you want ME to do your job or shall you?” I had to almost beg her to followup on this. She was suppose to call me back but I never heard back from her. I’m upset because you have a 5 day window in which they have to have the shots or they are not protected. I put a call into the peds office, but we have already seen how unhelpful they can be. I just don’t have the $2500 to fork out for these shots right now..so hopefully someone will figure this out.

Still no word on the lab results but I figured we wouldn't hear anything until next week anyways. It's really been pretty boring around here lately..but I'll take boring over anything else any day.

Tests are scheduled

I just got off the phone with the pulmonologists office and they scheduled the CT's and bronchoscopy for April 8th. I was hoping to get this done sooner but they need to have two blocks scheduled for anesthesia since she will be having both tests at the same time. I just put a call into her cardiologist to let him know about the CT and find out if she needs antibiotics before the scope.

Arianna has been doing great. She is getting so good with her walking and even starting to run. She has been sleeping alot better since we put her bed next to ours. I have to admit I LOVE having her sleep right next to me in her own bed. I can reach my arm out in the middle of the night and feel her breathing, which reassures me that everything is ok. She hasn't needed oxygen the past 2 days...YIPEE!! She is not eating like she was last week but I'm hoping that will pick back up soon. We saw the nutritionist on Tuesday and Arianna weighed 18 pounds 8 ozs, which is a 4 oz increase since last month. She is slowly gaining but at least we're gaining!

Hope you all have a wonderful weekend!

2008 Heart Walk

I know some of you already received this in an email but for those who didn't please read below.

Hello Everyone,

I wanted to let you all know that our family is participating in this years Heart Walk, which is held on May 3rd. I have been contacted by the American Heart Association to speak at the event. We are walking in honor of Arianna and all our family members who have battled heart disease. If you are interested in joining our team and walking with us you can click on the link below to join. The team name is Mended Little Hearts, which is the name of the support group I'm coordinating. This is a great opportunity to spread the word.

http://heartwalk.kintera.org/tucsonaz/mendedlittlehearts

We are collecting donations for the American Heart Associations if you would like to contribute. The minimum the AHA website accepts is $25, so if you want to contribute less you can send your donation directly to me. Please do not feel obligated to do either, we already appreciate the support we have recieved from you all.

Thank you,

Vanessa, Robert & Arianna

Good Report

Arianna did really good during her hearing test. She passed all the tests with flying colors. (And yes Krista…we had monkeys!) She wants to follow Arianna annually and was able to give us a recommendation for a speech therapist.

Then we were off for the blood draw which she screamed her head off the entire time. I noticed her getting a little blue before we went in for the blood draw so I hooked her up to some oxygen, which was a good thing because her eye lids were totally blue when they were drawing blood. Then we went out to the courtyard and she enjoyed a sucker the nurse gave her.



Then she walked around the grass for awhile and got mad when I picked her up to leave.
I don’t think I’ve ever seen grass like this in Tucson.

She hasn’t had much of an appetite all day so I’m praying she start eating again. We see the nutritionist and OT tomorrow so we’ll see how much she weighs. Right now she is sleeping and maintaining decend numbers so we haven’t had to put the O2. We’ll just keep an eye on her and give her the oxygen when needed.

Well its late and I need to get to bed. Hope you all have a wonderful week. Please keep Emma in your prayers she has her 2nd surgery this Friday.

Weekend Update

I just love watching her eat! She has come so far with her eating!

And yes...that is a cannula you see on her face.

Starting on Friday Arianna started acting a little different. Nothing drastic or anything, but just wasn’t eating much and seemed very irritable. Last night I decided to check her sats and she was running at 94, which is a little lower than what she was the week before. I decided to monitor her when she went to bed and sure enough she was dropping to 90 and even a dip into the 80’s so we put the oxygen back on. Then this morning I took her off the O2 and she was staying at 94 so I decided to keep it off. I started feeding her breakfast and she immediately started dropping so back came the O2. It seemed immediately after eating her sats would rise and stay steady so I took the O2 back off. It’s amazing the significant difference in her eating from the 2 days before. She seems to be playing fine so we’re only doing the oxygen when sleeping and eating to give her the extra help. This was exactly what the pulmonologist said to do if we noticed her acting different during the day. Regarding the pulmo, I still don’t have a date for the tests but I’m thinking I might hear something tomorrow.

We will be heading to the lab first thing in the morning then off for her hearing test. I’ll let you know of we have the clapping monkeys Krista! You kind of have me a little scared now…LOL!

You'll never believe what I did

So our morning started out pretty good. We had to get up early for a doctor appointment. All was going welll - headed out the door, realized I had to put the car seat in my car because the van is not running, get the car seat in, put all the bags in the car, get Arianna strapped in the carseat, shut the door to realize.....I LOCKED MY KEYS IN THE CAR!!! I had no way of getting in the car and there was my precious baby sitting so nicely in her carseat wondering why in the world I was staring at her through the window. Thank goodness I had a spare key to the house hidden somewhere so I was able to get inside and get the house phone (since I locked my purse in the car I had no cell phone). I called my mom, but no answer, and for some reason I couldn't remember Roberts number so the only number my stupid brain knew to call was 911. I was crying and felt like an idiot. 5 minutes later I had the biggest firetruck with 4 firefighters at my house trying to open the car door. Well apparently my car is the safest car in the world and the firemen couldn't even get the door open. I finally got ahold of my mom and she gave me Roberts number so I called him and told him he needed to come home to open the car because I locked Arianna in the car!!! He was 20 minutes away so I was a nervous wreck, trying to calm Arianna but she was scared to death because she could see all these men attacking the vehicle and she had no clue why mommy couldn't open the door and get her. The nice thing was that I was able to use sign to communicate with her. I told her the men were "good" and they were going to "help her". She immediatly calmed down after I told her that and seemed to be less scared. It took them 25 minutes to open the door and they felt pretty dumb cause it took them that long. They said if it was summer they would of already broke the window. Good thing they didn't have to do that. So that was my stupid mommy moment of the day. I still can't believe I did that. I feel bad for the 911 dispatcher...I was crying so bad when I called she calmed me down then told me she too has locked her baby in the car once and not too feel bad. I'm just happy she at least had her paci during this whole ordeal. Oh man...what a morning.

I tried calling the immunologist office to see if we could still make it but no one answered so we decided to just show up anyways and try to be seen. I think after they heard the sob story of how I locked Arianna in the car they felt bad so decided to squeeze us in. LOL! The doctor started telling me how children with DiGeorge Syndrome can develop autoimmune disorders and he will be keeping an eye out for that. I asked him why her IgE levels were found to be abnormally high and he said they really weren't that high and that this is normal in children with DiGeorge. I have a really hard time understanding the immunology stuff so I put alot of trust into this doctor. This can possibly mean she will develop allergies as she gets older but it can also mean nothing. Just wait and see type thing....seems to be the theme for these doctors. He did order some labs to be done which will check her T-cell function and regular labs to make sure there are no red flags. I couldn't get these labs drawn today because the cells would have died before reaching the lab so we will be going on Monday to get labs drawn. We also have her hearing test on Monday so we'll probably get the labs done early so she has time to calm down before going in the afternoon for the hearing test.

Oh yeah, I did ask the immunologist about exposing Arianna to other children and he didn't give me a yes or no answer. I told him it would be nothing like putting her in daycare but maybe letting her go to the church daycare (supervised by myself or my mom, since I'm not ready to just hand her over). He said that church daycares are worse than if I put her in daycare 5 days a week. The best way I can explain this is if there were 10 kids who go to 10 different daycares during the week then they come to church, then technically Arianna is being exposed to 10 different daycares. People don't realize they can be caring a virus without having symptoms. I figured since her levels are good then we wouldn't have to worry about her immunity but that is not the case. He said no matter what, she is a DiGeorge child, which means she was born with some of her thymus missing and therefor means she is missing part of her immune system. No matter what we do she will pick up colds/virus more often than healthy children. It's up to us if we decide to expose her to these things and I for one don't want to. He definintly recommends keeping her away from school age children till RSV season is over. There is a more serious threat with her since we don't know what caused her respiratory distress and low saturations a few weeks ago. So...with this being said we are still in quarantine, which I like to call it, and holding out until the RSV season is over. This is a small price to pay for the health of our child. The last thing we need right now is for her to get sick right before these upcoming tests. So for those of you we haven't been able to see please don't think it's because we don't want to see you all its just what we have to do in order to keep our baby girl well.

In agreement...well sort of

After talking things over with Robert we both agree that the CT scans and bronchoscopy need to be done. We don’t know what put her in the hospital and if there is some underlining problem then we need to know about it to prevent another episode.

I did hear from the pulmonologists office today telling me the first available slot in on April 8th which is the same day as her appointment with the pulmo doctor. I told her the doctor wanted it done before we saw him and if we had to reschedule the April 8th appointment that would put us probably another month out which I don’t want to do. I rather get it over and done with so I don’t have to stress about it anymore. She did mention that they have an availability next Tuesday but she is still pending the bronchoscopy referral, so she will be giving the insurance company a call tomorrow. She also said we will have to stay the night in the hospital because they want to do a pH probe on her. I didn’t understand why he wanted this test done when the doctors in the hospital decided not to do it. She seemed confused herself and asked a lot of questions about the hospitalization. I explained that Arianna had an upper GI study along with a swallow study to rule out aspiration and silent reflux. The pulmonologist did mention possibly doing a pH probe but after the GI studies came back normal it was never mentioned again. (But then again they pulmonologist only saw us once so it’s possible the attending never knew about his plans) We don’t think they need to do this test because she has already had numerous tests showing she does not have reflux but maybe there is another reason for doing this test. If they do decide to do the pH probe I will be requesting a cosult with the doctor before subjecting Arianna to all these tests. So....the pulmo nurse will be emailing the doctor since he is out of town and see what he wants to do. I am having some issues with the times they do the tests since Arianna would have to fast. I’m praying they will have an early morning appointment become available. Don’t want to mess with her eating since she is doing so well with it right now.

Well I better go to bed since we have an early morning appointment with the immunologist. Ugh…probably be heading to the lab after that appointment. Poor baby…seems like she is always getting stuck with needles. ☹

Just when life starts to feel normal...

Isn’t it crazy how things can go from completely boring to having me in panic mode. I just got a call back from Arianna’s pediatrician and she received a response back from the pulmonologist regarding Arianna. He wants to have a CT of her lungs and heart along with a bronchoscopy (scope of her lungs) before April 8th appointment. So…here I am freaking out once again that she has to go under general anesthetia. Why can’t things stay calm for more than a week. We won’t know when these tests will be done, but we know they will all be done at the same time. When we were at the peds office last week I told her I did notice a slight change in Arianna’s energy and eating habits since being off the O2. She mentioned this to the pulmo and he suggested putting her back on 1-1.5 liters of O2 at night. But of course since we’ve seen the peds last week Arianna’s eating and energy has seemed to get a lot better. So basically its up to me, if I feel she is having a sluggish day then I am to put her on O2 at night. I have been checking her sats every other day and she remains in the mid-high 90’s which is right where she needs to be.

So my feelings right now…well I guess I’m wondering why they still want to do the CT and scope since she is doing so well. But then again I know there could possibly be something going on that we cannot see on the outside. We still don’t know why she went into respiratory distress and was hospitalized, requiring her to be on oxygen for 3 weeks. Its just so hard to put your child through something like this when they are doing so well.

Another day...

Not too much going on around here. I had a rough day yesterday but feeling a lot better today. I guess being a stay at home mom can get to you at times and when your child does not want anyone but you ALL the time you don’t get much of a break. Don’t get me wrong I LOVE being home with Arianna but I think I need to start getting some mommy time so I don’t go nuts.

Arianna did have a little accident yesterday and hit her eye on the computer desk. She got the sharp metal edge and put a nice gash in her eyebrow. Poor baby she was bleeding like crazy and kind of freaked me out. I think this is her first official boo boo..well besides the huge scar across her chest. Here’s a picture of her today, sporting her bandaid and her big smile under that paci!



So for those of you who remember my comment about Arianna sleeping with us till she’s 15, well I decided to try and get her to sleep in her bed….but here’s the catch…it’s really an exstension of our bed. She has one of those 3-1 cribs, which turn into a toddler bed/daybed, then a full-size head/foot board. REALLY NICE! So I decided to ask Robert to convert the crib into a daybed and push it right up against our bed. It’s actually the same height with just a small gap in between beds so I just stuffed a blanket to fill that up. So last night was the first night sleeping this way and she stayed in her bed the whole night. She woke up a few times, rolled over, felt my face then went back to sleep. It was so nice not being kicked in the head or stomach all night. She is a very wild sleeper and normally ends up with her head at the opposite end, which she did last night. I know technically she is still sleeping with us but it’s a step out of our bed.

Today we were suppose to have speech therapy but after careful consideration we have decided to look for a different type of therapy. We still have Janet, Arianna’s OT, which works a lot with her feeding and oral motor and Arianna has shown a huge improvement in these areas. She has had 5 days of excellent eating. She is totally into feeding her self with utensils...it's the cutest/messiest thing ever! They are still looking for a new therapist and don’t know how long it will take to find another one. Even with Arianna’s signing the communication barrier is becoming more of an issue for us. I am trying my best to learn as many signs as I can so we don’t have the frustrations. Guess I need to start buying the Signing Time videos for her since she knows all the signs from the Baby Signing Time videos. It was so cute she signed “baby doll” today. This is good to see her putting the two signs together. (Hey Pam, how did Madison become so good with her signing? I’m open to suggestions!)


I guess that’s it for us. She just laid down for her afternoon nap and I’m seriously thinking about joining, her but I have way too much to do. The only thing going on this week is our appointment with the immunologist…yuck..we’re always given a lab slip when we leave his office. ☹ To be honest, I forgot which tests need to be done. Oh well I’ll find out on Friday. Hey Kathy…ever get Isaac’s labs drawn? Welll better get off of here. Thanks for checking up on us!