Bike ride!

Check out my baby girl on her bike! This was her first bike ride and she seemed to like it. We were only able to make it to the mail box and back home...as you can see it's right across the street so it wasn't that far.

I also have to tell you the new words Arianna can say: arm, knee, and eat! Today was the first time she said 'eat' and I was SO shocked. I was asking her if she was hungry then signed 'eat' at the same time I said it...and she signed & said it back to me! I started a list of words she can say and we are up to 26 words but only 18 words that someone besides myself could understand. I'm so proud of my baby girl! It's been a slow road with her speech but I know she will talk when she is ready.

Chef Rock from Hell's Kitchen

I get updates from google anytime something is posted about "Congenital Heart Defects" and "DiGeorge Syndrome". This was so interested I had to share it with you guys.

http://www.marketwatch.com/news/story/chef-rock-rock-signature-chefs/story.aspx?guid=%7B42C64A85-63C5-4327-9914-FCE1F5F88F1F%7D&dist=hppr

Pictures

Where did my baby go?

Drinking from her cool straw

Watching her favorite show...Wow Wow Wubbzy!!

It's so cute....she finally smiles for the camera.

I know I've slacked on the photo's lately so hope you enjoyed.

Our day has been rather good around here. It started off waking up by getting the sweetest little kisses from my baby girl! That just melts my heart when she wakes me up like that. :)

Then Arianna played in the playroom because we finally got a cable box in there that gets the Noggin channel. It's so funny cause we've had that room set up for her ever since we've moved in, with the same toys, but now that she can watch her shows in there she won't play anywhere else. I'm liking it ALOT!

Then I had to head over to the hospital to visit with a family in ICU. Today was my first time taking one of my Mended Little Hearts visitors along with me to show her the ropes. Unfortunatly, the mom just stepped out so we weren't able to visit with anyone but we did go to the cafateria and chat for awhile. I can't tell you how great it feels to sit down face-to-face with another heart mom and talk. I felt so normal and comfortable talking with her. And she has the cutest little 4 month old that I can't wait to hold.

So when I got home I decided to download all the video footage we've acquired since we purchased the camera. I'm actually downloading the surgery footage right now...not the best time of our life but I'm happy we have it on film to show Arianna when she's older. After watching all the infant videos it made me appreciate all that we've been through and see how far Arianna has come. It was just one year ago that she was learning to crawl and 8 months ago she was taking her first wobbly steps. It's amazing how time flys by. I can't wait to get all the footage on the computer and start putting them onto CD's. I would like to put together a couple CD's of different stages in her life, along with pictures and music but I'm not sure how to do all that yet. I really need to start scrapbooking but I'm not all that good at it yet and it can be rather expensive. Maybe Krista can let me borrow her Cricut machine since I've hear those are pretty neat! I'll have to safe up to get one myself.

Robert is feeling pretty crappy today and laying on the cough right now. He caught the same virus I had. :( I have some really cute pictures of him and Ari relaxing on the recliner but I'm not sure he'd like me to post those.

I did hear back from the pediatrician and of course Arianna is doing alot better today. Her sats when sleeping were in the low 90's but she still wants me to give her the Albuterol before bed and monitor her to see if that keeps her airways open all night. She wants us to keep that up through the weekend and see if that helps. We set up an appointment for Friday because the pedi didn't want us to get into the long week (Labor Day) and have problems arise. I love our pedi!

Arianna took a late nap at 4:30, which seems to be the norm for her lately. Ugh! So I tried to wake her up at 5:30 but she just laid on me and cried everytime I tried to make her wake up. Finally at 7:00 she woke up, so it's going to be a late night for my little rugrat.

Holding her own

After her nap she was still satting on the low side so I used her Albuterol inhaler and that made her sats jump up to 95%!!!

She did really well tonight without coughing or wheezing. Right before bed I gave her some Motrin because she cut another tooth tonight and she immediatly threw it back up along with some nasty mucous. I know that's nasty...but at least she got it out.

Once she was asleep I checked her sats again and she was running in the high 80's and sounded a little junky. I gave her another dose of her inhaler and that seemed to help. She's only satting at 90% right now while she is sleeping which is not where she should be so I'm still going to put a call into the pediatrician tomorrow and see how often I should be doing her inhaler and for how long. It seems to help her a little so that is reassuring. I'm just worried about going into the winter season now knowing her lungs are still so fragile. It wasn't even like she caught the full blown respiratory bug that I had and it's causing her this much trouble. I am really not looking forward to all that isolation again but it's a small price to pay for the health of my child.

As of right now she is holding her own so we won't put the oxygen on unless she drops into the 80's. I'm just so happy this time around we know she has lung issues and have all the things at home to treat it. It's better than letting it get worse over time then being put in the hospital for a week.

The lady came out to check our equipment today and everything checked out fine. We got a new lead for the pulse oximeter but she didn't bring extras. UGH!! We can only get 2 a month per our insurance which is SO stupid. So basically the reading we were getting yesterday were probably correct which means something is going on with her little lungs.

I did talk to the pediatrician that was working yesterday, not our doctor, and she told me to do the Albuterol treatments every 4 hours if she was wheezing. Of course she is no longer wheezing but be is still satting on the low side. I checked her when she was taking a nap this afternoon and she was at 87% so I hooked up the O2. Then when she was eating dinner I checked her again, since this is the only time she is sitting still and she was satting at 90%. She normally sats around 94% so this is a little concerning. I would understand if she was coughing and showing symptoms of a cold but she is not. So we'll keep up with the O2 during naps and at night. I have completely misplaced the cloth tape I need for her face so I'll be running out to get some more.

Our pediatrician is in tomorrow so I'll put a call into her first thing in the morning and see what she wants me to do.

Thanks for checking in on my girl. I finally bought some batteries so I'll post some pictures later!

Quick update

***So after I updated I laid Arianna down for her nap and checked her pulse ox...86%...then dropped to 82%. This is a huge difference then her normal 92% so I waited and waited and it kept bouncing all over the place but never above 88%. I checked it on myself and I had a reading of 95% which is normal since I'm still feeling congested. So I nicely ask Robert to bring in the HUGE oxygen tank from the garage and by the time he gets it in our room the stupid machine isn't reading correctly. UGH!! I called the home health people to order more pulse ox leads because we are out of new ones and the lady thought it would be better to have a clinical visit to make sure the machine is working properly. So tomorrow someone should be coming out to check our equipment. This still doesn't help us today thought.

Earlier I put a call into the pediatricians office to ask about her Albuterol treatments. You know how many puffs and how often since we've only used it while she was really sick back in February. I tell her the symptoms she was having and how our pulse oximeter wasn't working correctly. I told her Arianna normally sats about 92% while sleeping so I know if she has any respiratory issues that would make her sats drop below 90%. She sad we should put her on oxygen while sleeping until we get our pulse ox fixed.

Let me tell you what...she was PISSED when we put the cannula on her. She was sleeping and the second we put it on her she was screaming as if I was hurting her. Needless to say she did not get a good nap and asking super cranky right now. ***



I'm finally feeling better but it looks like Arianna caught the same virus as me. She is coughing and wheezing so we started her Albuterol inhaler this afternoon. She is still playing and running around so it's not affecting her too much. She's been taking really long naps during the day and staying up till midnight so it makes for a very long evening around here. Everyone tells me to just wake her up after an hour....yeah right...you try and do that and she how she acts. Poor baby just needs her beauty rest.

Mommy yuckies

As you can tell from the title of this post, I'm not feeling all that great today. I tried to sleep in a bit but Arianna just loves me too much and didn't want to let that happy. I just love how much she loves me! :)

Amazingly, Robert has really stepped up and helped me with Arianna today. Not that he doesn't help out but he's going above and beyond what he normally does. Honestly, I think that's because he want to go RC flying tomorrow. Men always have their motives. LOL! So I'm sitting here in peace and quite for the 2nd time today and it feels kind of weird to be home alone. Early he took her to the grocery store and right now he took her to the park to meet a buddy of his...doing some guy stuff. I could get used to this! :)

All in all it's been a quite afternoon with Arianna taking a 3 hour nap on the couch while we were able to sit and watch an entire movie!!! That's a miracle in itself. LOL!

Arianna started with a cough a few nights ago while she was sleeping so I'm beginning to wonder if maybe this is something she passed on to me. She started with a little coughing this afternoon but I immediatly laid my hands on her and prayed that she wouldn't get this head cold. We know how yucky that would be for her. At least we have the oxygen tank still just in case we need it, but I'm hoping we don't.

I'm beginning to feel yuck but thought I would come on here and post since I had the time. Hope you all are having a wonderful weekend.