Working girl

My afternoon yesterday was spent studying. Arianna just wanted to be like mommy.

I wasn't able to get anything done with her on the computer so I set her up with her own workstation....

We're doing good. Arianna had a little bit of a runny nose but it cleared up after some Benadryl. She had a late 3 hour nap so she stayed up till 12:30am!!! It's okay, since I'm up late anyways but it do prefer an earlier bedtime for lil' Miss. She has NEVER had a bedtime. Megan, I envy Elijah and his early bedtime.

Today we're planning on going over to Robert's brothers house to watch the football games. My team isn't on....Go Cowboys!!!....but the Bronco's play tonight (I think) and that's his brothers team. Besides, Arianna LOVES hanging out with her cousins. I'll have to take my camera and try to get some pictures.

Thank you

Thank you all for your kind words. I'm feeling much better today. Arianna had a really good night, no coughing, no fevers, and high sats! She woke up in a good mood and so far no runny nose. Crossing my fingers that this virus has finally run it's course.

Just couldn't leave this blog updated on a sad note so here is a cute picture from a few weeks ago. She was making brownies. She LOVES to help mommy in the kitchen!

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.

Good report

Dancing around the living room...

Kathy, I decided this will be her halloween costume!

Cheese!


Mom, do you need any help?

(This kid LOVES playing with the dishwasher)

This is the face she does every time I say cheese..

So the doctor checked her lungs, ears, and throat and everything looked good. Thank God!!! At first she thought there was some decreased sounds in her right lung, she said it's really hard to hear over her murmur, but after 4 attempts everything sounded good. I've been wanting to buy a stethescope for some time and I'm sure some of you heart moms already have one, so do you have a preference? I figured I'll look on Ebay and see what they got.

The doctor felt that Arianna is just dealing with a normal virus and because of her lung disease we need to monitor her sats throughout the day. If she drops below 87 while she sleeping, or 90 while awake, then we are to put the give her some oxygen.

Get this...we are in the parkin lot of the doctors office and Arianna was falling asleep so I checked her sats and she was 92%. We get in the doctors office, they check her her sats and she's pulling 97%. Doesn't that always happen....your child is sick until the second they step into the doctors office. She did do a little cough when the doctor walked in the room so at least they know I'm not a crazy mom...wait...they already know I'm a crazy mom. :)

Our pediatrician is so great, the second she walked in the room she handed me Arianna's last two reports in her chart. She knows how organized I am with her medical records and always gives me copies. Seriously...I love this woman!

Right now we are waiting for Robert to get back with gas for the grill and we are going to grill up some hamburgers. YUMMY!

To the doctor we go...

Chillin' watching t.v.

Smiling for the camera!

Arianna had a rough night again last night. She was coughing and couldn't get comfortable. I checked on her about midnight and she had a low-grade fever. I hooked her up to our new pulse ox machine, which I'm in love with, and she was satting at 85%!! Okay...that is not normal so I monitored her for awhile and sure enough she was staying in the mid-to-low 80's so out came the oxygen. Urgh!

I woke up around 7am and her sats were 93, but when I looked at her the cannula was out of her nose. Guess I didn't do that good of a tape job. I think our problem is also that I only have infant cannula's and those don't seem to stay put very well.

She woke up around 8:30 and I checked her sats without oxygen and she was running between 89-91 which is low for her when she's awake. Then it hit me...HELLO...we do have an albuterol inhaler. I gave her a treatment and rechecked her at 10:30 and she was satting at 95%.

I called the pediatrician anyways and we have a 3:30 appointment just to get checked out. She still had a low-grade fever this morning so maybe she is fighting something off. If she is like this with a summer cold...I don't even want to think about what the winter will be like. Good thing my daughter likes masks cause that might be the only way she is going to get out of the house.

We got a call this morning from the radiology department at the hospital and scheduled Arianna's follow up renal (kidney) ultrasound for next Wednesday. We have our appointment with urology next month so we need to get this done ahead of time. And yes, I will be getting the ultrasound results before so I'll already know what is going on. :)

I'll update when we get back from our appointment.

Sick again...

We just can't get a break around here. Arianna was up all night coughing. Poor baby just wasn't feeling very good. She woke up and the cough is still there and her runny nose is getting worse. I've done the Bendryl but there isn't anything else I can give her so we just have to wait it out. I know she isn't feeling good because she woke up at 9am and went down for a nap at 1pm. I also woke up with a scratching throat so I'm praying it doesn't start passsing around the house again.



I'm disappointed because I had 3 families to visit in the PICU tomorrow but I can't go with any of us being sick. We were also schedule to take group pictures for our support group this Saturday but I had to reschedule that as well. This is the second time we've had to do that.



I'm going to get some lunch but wanted to update real quick.

Quick update

I haven't posted in a few days but things are going well for us. Arianna has had a runny nose for the past 5 days and started with a cough last night. She woke up feeling fine, no coughing, but still had the runny nose. Hopefully this will clear up soon cause her poor nose is all red from using so much tissue.

We have had a long day that started at 7am. I know to most of you that isn't eary but to us it is. I stay up till 2am so 7am came WAY to early for me this morning. I have so much I need to do but don't have the energy to do anything. My house is a mess and I'm hoping I just wake up in the morning and it's magically cleaned. :) A girl can wish right?!?! My poor baby is SO tired because I didn't let her take a nap today so I hope she goes to bed soon so we can all get some rest.