Quick update

We took Arianna in today and the pediatrician says she has croup. There is nothing we can do but wait it out and give oxyen as needed. She will definintly be sleeping with us until this is over cause her airway can get worse during the night. We're not sure if we will be able to keep our plans of going to Robert's family house for super bowl.....we'll just have to wait and see.

I did have a chance to snap a few pictures of Arianna wither her wonderful pediatrician, Dr. Kurtzman!

Arianna always plays with her necklaces

She looks really upset in this picture but she was actually giving her dorky little smile she always gives. Too bad it doesn't portray well in this photo.

Giveaway

Check out this link for a beautiful giveaway!

Today is a good day

Arianna did great last night. She was satting in the low 90's so I decided to keep the oxygen off. I didn't even monitor her through the night cause she was doing so well.

I ended up having a "blonde" moment while jumping up to check on Arianna this morning and fell right off the bed, my hips broke the fall, then my head slammed into the wall. I can laugh about it now but it hurt SO bad. Poor Arianna was just sitting in my bed looking at me like I was crazy. So now I have the worst headache all day and my back isn't feeling so good.

Arianna on the other hand is doing great today. She is playing, eating, and getting on my nerves. Oh wait....probably shouldn't say that....LOL! No seriously, she is doing amazing. She's satting in the mid-to-low 90's and doesn't have a fever. We will keep the Albuterol going all day.

I did get a phone call from her pediatrician first thing this morning, along with an email from her. She got my email this morning and felt horrible that she didn't get to me until this morning. She told me I probably did the best thing buy keeping her home and NOT going into the ER. We are to keep the Albuterol going throughout the day and spot check her saturations all day. Since I was concerned about the heart rate last night I asked when should I be concerned. She said if Arianna's heart rate with a fever is higher than 190 or with out a fever at 170 to take her in the ER immediatly. Her heart rate is about 120-135 today so we're doing good. She also told me she will give me her personal pager number and home number tomorrow when I see her. She knows I would never abuse the privilage of having that and knows how cautious I am about taking Arianna into the hospital. Isn't she the greatest?!?! I guess tomorrows appointment is to make sure she doesn't have pneuomia or any underlining issues.

I'll update from that when we get home.

Where did my baby go?

I know Arianna loves her Daddy and has been getting into the habit of wanting him at night but since she has moved to her own room I can normally get her back to sleep. Well not last night. All she wanted was her Daddy. I walked in her room and she just looked at me, cried, and said "no" in the mean little voice of hers, and pushed me away.

Okay....that was very heartbreaking for me. What happened to that little baby that only wanted her mommy?.

So Daddy ended up putting her in bed with him cause she was not about to sleep alone last night. I did sneak her back in her room for maybe an hour but that was it.

Then this morning she wakes up and I can just tell something wasn't right. She just acted very crabby and tired. Her eyes were puffy which has been the norm the past week. I check her sats and she was satting at 89 while laying down. So I leave it there for about an hour and she was satting between 88-91 so something is going on. (Kathy I thought of you as soon as I saw that number below 93...I was ready to pull the O2 out) I was told no to put the O2 on her until she dips below 88 and she only did that a few times and jumped back up. She did have a this little cough last night but nothing major. So I'm wondering if thats why she was so cranky last night.

I did give her the albuterol inhaler about an hour ago and that didn't do anything for her. Come to think of it, it didn't really help last time either.

After we laid in bed for 2 hours watching cartoons (thats how I can tell she wasn't feel all that well) we finally came into the living room and she is now playing on the floor with some toys. Normally, she wakes up running all over the place but not today. She seems more clingy and cranky and coughing as I type. I had planned on doing some errands today but not now. We'll just stay home and keep monitoring her throughout the day.

*****UPDATE*****

She fake smiled for me

She was so upset with me putting this on her. Right after this picture was taken I had to tape her cannula on and that tape has come off and on 3 times. I have to use the cloth tape cause she is sensitive to anything else.

I spoke to the pulmonary nurse to call in another script for her Albuterol and while on the phone Ariannas sats dropped to 84 so the O2 came out. The nurse told me to keep it on her today and just spot check her and definintly keep it on her while sleeping. We see the pulmonologist next week so it will be good to follow up with him.

Now we are sitting on the couch coloring and I'm trying to brib her with ice cream but she won't eat it. That's a first.

We had to cancel our playdate we were going to have tomorrow. :( I was really looking forward to that but we can't risk this being a virus and passing it on to another heart kid. I'll update more when I can.

****Another update****

This was the extent of our playing today. After I took this picture she got really cranky and won't even walk.

She took a nap for 2 hours and her heart rate is pretty high around 170-180 and is up to 1.5 liters of oxygen. Her temp is 103.5. I just put a call into the pediatrician and of course he isn't even our regular doctor. I'll let you all know what they say.

***next update***

The doctor couldn't even call me back but a nurse telling me he wants her to go to the ER. This pissed me off that he wouldn't even talk to me. Rememeber this is a doctor that probably didn't even look in her chart to see what was wrong with her. Can you tell I don't like this guy. So I stressed to her Arianna's condition (DiGeorge, lund disease, heart defects, etc.) and told her our pulmonologist told us to keep Arianna away from the hospital during RSV season cause she could not handle such a virus. I've emailed her pediatricain in hopes to hear back from her. Ariannas heart rate is back down to 140 but is still on 2 liters of O2. Her temp is down to 102.5. Our O2 tank will only let us go up to 4 liters so if she requires anything more than 2 liters I'll definintly jump in the car and head out. At this point I'm waiting it out for a little bit longer before heading to the germ-filled ER.

**8pm update**

Arianna held sats in the low 90's for 15 mintues so we took the cannula off. She cried for the pulse ox lead to come off so I took it off as well. She went straight to her slide to play. Poor thing was scared all day to even walk while she was wearing the cannula. I'll just keep checking her as she plays and hopefully will only need the O2 tonight when she sleeps.

Another heart mom posted this and I had to post it

Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't carewhat sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips,button nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber babyfor being flat-out ugly.

She wants a baby that will roll over, sit up and take those firststeps right on schedule (according to the baby development chart on page 57,column two).

Every mother wants a baby that can see, hear, run, jump and fireneurons by the billions.

She wants a kid that can smack the ball out of the park and do toepoints that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn'tclose.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.

Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe itwill be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeperto a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionallyquestioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things inperspective, so let me do it for you.

From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding ontothe delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July,counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Upand No Place To Go

I GOT A JOB!!!

That's right....I GOT A JOB!!!! I wasn't expecting the call until Friday or Saturday but I got it tonight. The company is a perfect fit for me. Since I'm an independent contractor I make my own hours and get to work out of my home. The reason I choose this career was because I had to stay home with Arianna and now that it's actually here I'm so excited. It sucks that my first paycheck won't be for 2 months but it's better than no paycheck.

Okay, enough about me.

Arianna is doing great! We spent the evening at my grandparents house and she just played and played until she fell asleep on the car ride home. She's been sleeping in her room ever since we got home.

For her 1st night in her new room I have to say she did really good. She woke up about 3 times between 11pm-3am but I just came in, laid down with her and she fell right back to sleep. But because of my back problems is was not a very comfortable position for me so when she woke up at 6:30 I just brought her back to bed with me since Robert was already gone to work.

I'm not sure if its all the moving I did yesterday of sleeping on pretty much just pillows last night but my back is not is good shape today.

I know it will take a few days for her to get used to sleeping in there so we'll give it time.

She wake up first thing this morning and ran in her room, jumped in her bed, pulled the covers up (which this is a girl who hates blankets), and was all smiles. So I think her new room was a hit!

Check out my new room!

Loving her new room!

Check out my heart nightlight

Just a start...

I had nothing for the walls so I put puzzles we glued together on the walls.


Finally sleeping with all her stuffed animals.

So as you can tell she was excited about her new room. That was until it was time for bed. We have started the routine of going to bed, reading a story, and sometimes even falling asleep. Well tonight after our story time she wanted to bring her stuffed animals into bed as you can see from the above picture. She ended up crying and crying for her Daddy, then crying and crying some more for no reason. Finally I realized my baby girl just wanted to be rocked to sleep. I'm sure the transition to her new room was alot for her today. We'll see how she does when she wakes up in the middle of the night.

***Update 11pm***

Arianna woke up once crying so much I thought she was in pain. Nope....she just needed her Daddy. After a cup of milk and some good lovin' from Daddy she passed back out.

So for the past few weeks all she wants in the middle of the night is her Daddy. Kind of makes me sad...but I know he loves it. I know it's not going to help seeing how he isn't on board with the room transition so I won't be surprised if he puts her in bed with us. It's okay though....I can't complain about my baby girl wanting to sleep with us.

The reason I'm really wanting to start the transition to her own room is because we're already planning ahead for the next........yep you guessed it.......baby. (Shhh...don't tell Robert cause even though he's on board with it just talking about it still freaks him out. Typical man. It's not like he has to do the hard part) I just know I want my kids to not be too far apart in age and I think 4 years apart is a pretty good age gap. Honestly, I kind of freak out just talking about it but I know it's what I really want.

So... the first step is to get this little one in her own room, so that is what I'm working on.

Finally got her out of the house

So we didn't do too much. We went to the little post office by my house, Target, Ross, and the bank but she has so much fun getting out. She actually loves her stroller now and will sit there eating snacks the entire time. She did so well we even got her some Wubbzy figurines and that just made her day. She was so tired on the way home she caught a 10 minute nap. Now I'm home trying to figure out how to make her room more "girly." I think I'm going to attempt to have her sleep in her own room tonight. I still want to get a few things for her room but that will have to wait a few weeks. Wish us luck tonight. :)

Good night

This whole bedtime routine is really starting to come together. Now we lay in bed, read a book, then go straight to bed. I love it!

Last night was the same way expect for going to bed a little late because she slept in yesterday.

She only had one wretching episode but didn't throw up....AND.....slept in her bed all night long! This is the 3rd night this week she has slept in her bed the entire night. The other nights she did come to bed with us but it wasn't till 4 or 5 in the morning so that is really good. I can't believe out of no where she just starts sleeping by herself. I'm getting so excited I want to go decorate her room right now. Of course I need to go buy a few things but I'm so excited! I'm still nervous to think about putting her in her own room but she is becoming such a big girl I know this is something I need to do for her.

For the past 3 days Arianna has been doing alot of wretching. She has thrown up a few times but today was the ultimate. Right now we are in the middle of washing our bedding right now. Poor thing was just sitting there and the wretching started and the vomit came right after. She was covered and was crying, I felt so bad. So we had our 2nd bath today and she is just fine. She's throwing up alot of phelgm so I hope that will help with her coughing at night. Sometimes throwing up is a good thing with these kids no matter how much we hate to watch them go through it.

Softball anyone?!?!

We took Arianna to the park this afternoon since Robert wanted to practice throwing and hitting the softball around with his cousin Val. After the guys were done Val gave Arianna her very own, brand new, softball. She was totally thrilled and played with it all day long. I didn't take my camera with me so the above picture is with my phone. I just had to get a picture of her on the baseball field for the first time. She would throw the ball then run after it. It was really cute!

Baby Kate

Today is one of those days where your heart seems to break all over again. Just one year ago Baby Kate passed away due to congestive heart failure. It's amazing how much you can love a child, and family, that you've never even meet. So today I want to take the time to honor and remember Baby Kate.

For those who don't know about Kate's Kart please take the time to visit the website and see how you can help this organization.

Make an on-line slide show at www.OneTrueMedia.com

First of all I have to say I'm bummed that I didn't get any pictures. But as of today Arianna was able to peddle her bike a few times all by herself! She still needs to grow a little bit more and get the leg strength but we are on the right track. We will definintly be doing more bike riding in the days to come.

As for myself, we'll I've just beene extrememly busy planning our February Heart Party for our support group. I know it will all pay off in the end. :)

FYI - The new cabinet spot has turned into the new hiding spot. When she is in trouble....yep...that is where she goes. How can you get mad at her when she is being so adorable. But she definintly has been pushing my buttons lately. I'm just happy she is finally falling asleep again before 9pm. But tonight I went grocery shopping late and when I got home by 7:45 she was already in bed. I have to admit I was a little bummed that she was already in bed. That is the only time I get to snuggle with her. Oh well...at least Daddy was able to get some snuggle time in.

Well...I've been extremely busy on the job hunt. I have to do tons of employment tests and it just sucks. :( Hopefully I'll get a hit soon.

Just a quick update

Nothing new to talk about, which is a good thing. We had a nice relaxing weekend at home. Arianna seems to be doing alot of new things lately. She is growing up so fast. I'm trying to enjoy every little thing right now cause I know I will never get these years back.

I decided to empty out one of the cabinets in the dining room so she could play in it. She had a blast!



Check out the flashlight in her hand. Silly girl!

Then she slept in her bed ALL night last night! I'm so excited!

I can't believe it.....Arianna slept in her bed from 8pm till 5am!!! That was the longest she has slept along, without waking up crying and asking for milk, or for mommy or daddy. I really hope this keeps up. I have a goal to get her in her own room by 3. I have 10 months so I still have time. :)

Then today I was doing laundry and she loves to push the baskets for me. It happened to be her close in the dryer so I told her to push it to her room, then I happened to say "my room". She starts off down the hall saying "my room". I was in total shock cause she has never said "room" and barely says "my", it's normally "me". So I started thinking. Maybe if I make her room more kid friendly and fun she might actually want to sleep in there. So....there's my next project.

My little cook

I'm pretty tired so this will be quick. I've been working on support group stuff all day. I still have tons to do but I'm so exhausted it will have to wait till tomorrow. Guess 3 days of staying up till 3 or 4am is finally catching up to me.

Arianna had speech therapy yesterday. We did an evaluation and she is at the 18-21 month age for her speech. She is really coming alot though. Just today she put two new words together and I caught it on video. Here she is cooking!

She has a really soft voice so I'm not sure if you can hear her or not. Make sure to turn off the music at the bottom.

Photo and video editing at www.OneTrueMedia.com

Let's pretend

Since we had such a rough time with the cannula last night I decided to put one on her baby doll since she has really been into playing with her today. At first she was not sure what to think, then she warmed right up. The cutest part was when the cannula fell off the baby's nose she said "uh oh" and went and put it back on her. She is the most compassionate little girl! Here are some pictures with her baby.

It was a LONG night last night. She was not happy at all about putting the cannula on so we fought about it all night. I thought as she got older it would get easier....not so. She has only been up a few hours and was not very active. She was satting in the low 90's awake. She just feel asleep so I know she isn't feeling good cause this is a girl who never naps. I'll go fight to put the cannula back on her. :( Hopefully a nice nap with some good O2 will make her feel better.

I just wanted to give a quick update while I had the chance.

What a way to bring in the new year....

The yuckies have striked again. :(

New Years eve I started feeling like I was getting the head cold again. By morning both me and Arianna sounded congested but not too bad. Then as the day progressed she started coughing.

So much for staying home being isolated if we are still getting sick. :(

I decided to pull out the pulse ox machine, which is finally a nice smaller version instead of the huge thing I used to have, and she was satting in the mid-to-low 90's. So out came the Albuterol inhaler. Then out of no where she started throwing up, and throwing up, and throwing up. Poor baby. She feel fast asleep after that.

I decided to monitor her for a few hours when she feel asleep and she was satting at around 90 with only one dip into the 80's...so no O2 last night. :)

She did fine all morning but the cough is still there. I noticed a bluish tint to her face after a little crying episode, which is normal for most kids, but you know with a heart kid it makes you wonder. So I checked her sats and she was at 88% so out came the Albuterol again. She has pretty much been satting in the low 90's all day despite the albuterol treatments.

I'm just happy she is still playing like normal. Oh and this girl has an appetite on her today. I think she gained a pound today alone. :)

I just put her to sleep and her sats were 87% so out came the oxygen. I'm amazed she didn't even wake up when I put the cannula on, which she normally wakes up and FREAKS out.

So I'll be monitor watching all night...yipee (notice the sarcasm).

Oh yeah...we took her to the park yesterday and had a little picnic with Grams! It was SO much fun. Here are some pictures from yesterday.

Ready to play ball...

The leaves were falling off the trees as she played...

After our picnic and playing with the leaves we went for a walk around the park. We saw alot of kids out playing soccer and of course we stopped to watch them. Arianna loves watching kids play. I have to admit I was really sad watching them. It breaks my heart to think Arianna may not get the chance to play those types of sports. I know the docs can't tell me what her limitations will be but, if any, but it still breaks my heart that we have to even think about that kind of stuff. I hate to get her involved in a sport for a few years just to be told she maybe have to quit when she's older. I don't know, I guess I've been dealing with some emotional issues lately concerning the health of my daughter. But....I have to remember I have the Lord on our side and He will get us through anything.

After the park we went back to my parents house where Ari got to jam out with her Grams and Bepa. Man this kid sure loves music. She already has a guitar, keyboard, harmonica, and saxophone.

And this one's for you Sarah. She is finally coming around to the Wubbzy doll. :)