Paci came out...

We had a family party to go to last night and it's out of town. Not that bad of a drive about 45 minutes to an hour drive. Arianna did SO well without her paci until the last 10 minutes she was just crying and crying so I gave in. She fell asleep right away so that was nice. Then on the drive home I gave it to her to stay asleep. But first thing this morning I took it away and I think we'll just try to keep the paci for night time. At first I thought I would try to get rid of it completely but if she needs her paci at night....well then she gets it!

I can't tell you how much her speech is improving. She said "body" today for the first time, and also "right there". I just love here her sweet voice.

She is also really into bugs right now its the cutest thing. I was a total tomboy when I was little...into bugs, rocks, anything outdoors. Who knows...maybe she's just like her mama.

Today we are heading over to my sisters to watch the Dallas game. Go COWBOYS!!!

She eats!!!!

I just got home and Robert told me Arianna ate a quarter of a biscuit!!!! I can't believe it...this girl is not only eating more but eating bread?!?!? Seriously, why didn't I take that paci away a LONG time ago?!?! This morning she ate Cream of Wheat and she never eats breakfast. I hope this continues.

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! :)

Weekend Review

This is how Arianna's right ankle looked when I woke up Friday morning. I was freaking out!!! I thought her ankles were getting worse (ankle pronation) because I just jumped to conclusions, but Robert the wonderful dad he is decided to give her some Benadryl and the swelling went down a little. I made an appointment with the pediatrician anyways since it was Friday.

By the time we got to the pediatrian her ankle looked better but very red and warm to the touch. After a few residents looking at her and our pediatrician they thought it was an allergic reaction to a bug bite.

I didn't see a place where she was bit in the morning but I had to spend the afternoon at the hospital working for my support group. By the time I got home you could see a bubble where it looked like she was bit.

The pedi gave us antibiotics in case she got worse over the weekend. They said it could also be cellulitis so the antibiotics would be used to treat that if in fact that is what she had.

This is what her ankle looked like Friday afternoon.

Much better!

She keeps telling me she has a boo boo on her ankle and crys so I'm sure it still bother her. Thank goodness that is all it was. However, the mother I am I already scheduled an appointment for the orthopedic doctor this Thursday so I can talk to him more about her ankles. He really doesn't seem concerned with them but to both me and Robert we think the ankle pronation is gettinng a little worse...more on the right then the left. Of course in this picture you can't tell with all the swelling.

Not much else going on around here. I had a very busy week last week working on alot of things for my support group. I'm starting a visiting program for the NICU next week so it will be nice to meet some newly diagnosed heart families. Maybe nice isn't the proper word. I just get so much out of supporting other heart families.

Yesterday we went to get a group photo for our support group. It was alot of fun to be around heart families and just talk. I got to hold a couple babies which felt SO good. Arianna is the second to oldest child in our group, the oldest being 4 years old with HLHS.

Then today we went and got family photos and of course they suckered us into buying more photos then we would like. I got the cutest picture of all 3 kids and one of Arianna by herself. We won't get them till next month but I'll scan them so you can see them.

We don't have too much planned this week. I go in for my first physical therapy session tomorrow, which I'm really happy to finally be starting. I've actually had less back pain this weekend which was great. Last week I did alot of walking at the hospital but thanks to my wonderful doctor who finally prescribed me something stronger than Ibuprofen I was able to handle it. Hopefully PT will really help me out.

Then Arianna has Early Intervention and speech therapy on Tuesday which is normally just alot of playing so Arianna loves it. Speaking of speech, her speaking is really taking off. She is putting more sounds together and saying alot more words. I swear one of these days I'll get her on video.

It's 9:35 and I think I'm actually heading to bed. I've had a pretty emotional day today so I just need a good nights rest. Hope you all had a wonderful weekend. I know I need to check up on all my heart buddies...I promise to do that tomorrow.

Good night!

Fun in the bathroom!

I couldn't decide which picture to post so I decided to make a quick montage. She sure was having a blast in the bathroom tonight!

Make photo slide shows at www.OneTrueMedia.com

I have a little helper on my hands lately. I pulled the chair up to the sink when I was washing Arianna's cups tonight and after I rinsed them she would stack them properly in the drain board. I will definintly start having her help me more in the kitchen. :)

She really enjoys helping me cook too which is alot of fun. Now if I could only get her to eat more. She really has been stressed out lately by her poor eating. She is already a little peanut I don't need her losing any weight now. I'm not very creative with cooking so if you have any suggestions please let me know. At least she was 21 pounds last week so it's not like she is extremely small. As a mother I just want to feed my child and it's so frustrating when she doesn't want to eat. I feel like it's my fault when I know its not. At least she likes ice cream...it's been the only thing putting the weight on her!

Well I better get a few things done before bed. Good night!

Heart Buddies

Arianna & Kira

TOF buddies!

I can't tell you how good it felt to hold a baby again. But....I am definitly not ready for another one. I've been having the baby fever lately and after our playdate I decided neither I or Arianna are ready for that. However, it was so nice to sit down with another heart mom and just talk. Someone who truly knows what it feels like to have a heart baby and the every day fears that come along with it.

Speaking of fears....I had the worst experience this morning. I was sleeping peacefully when Robert wakes me up and tells me to check on Arianna cause he doesn't hear her breathing. I panic...shake her twice.....she doesn't move....I immediatly start crying because I think she is dead...Robert sits up....shakes her once and nothing...finally again...and she stirs.

There has been so many heart babies (and non-heart babies) that have passed away recently that I've been a little on edge lately. The slightest things brings me to tears. So this morning was just a little too much for me. I finally fell asleep after Robert calmed me down, but I NEVER want to be woke up like that again.

Something I posted along time ago on Arianna's CaringBridge page but I thought after this mornings experience I would post it again. Most of you have read it but for those who haven't...this gives you a look into our world.

What does it mean to be the parent of a child with a heart defect?

It means going into your baby’s room a dozen times a night just to check and see if he is breathing.

It means standing over the crib and watching for the chest to rise and fall and when you don’t see it move you begin to panic and put your head down close to the baby’s face to try to hear him breathe.

It means that when you don’t see the chest move and you don’t hear the breathing (because your own heart’s beating is drowning out any other sound in the room) you put your finger under the baby’s nose to feel the warm air on your finger - until you wake the baby and he stirs - and you’re thankful so thankful that he’s still with you.

It means waking up with a start every morning, jumping out of bed and running to your baby’s room wondering why he isn’t crying yet?

It means feeling a huge sense of relief when he hears you and opens his eyes and smiles.

It means saying a prayer of thanks for another day.

It means measuring out his medication and panicking if he spits some of it out. How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating.

It means checking his nailbeds against your own to determine how blue he is today.

It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

It means snuggling him in an extra blanket for fear he won’t be warm enough.

It means worrying that even a sniffle could cause an infection that would harm the heart.

It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby’s name and takes you straight back to the examination room.

It means knowing that everyday is a blessing and a gift.

It means knowing that you are the luckiest person in the world just to be a parent.

It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason.

It means praying for a miracle to save your baby’s life.

It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief.

It means your own heart knows a pain no parent should know.

It means feeling weak and helpless and angry and depressed because your child’s fate is out of your hands.

It means feeling strong and determined and brave because you know you have to be.

It means your love knows new unlimited boundaries.

It means your pride in your child’s accomplishments is unparalleled.

It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.

It means we are united by the same feelings.

It means that we all know the mixed up emotions of living with death-but more importantly of living with Life.

It means that even though we are strangers … we are more to each other than friends could ever be.

By Anna Marie Jaworski (1996)

CHD Survivors

Hope this lifts some spirits the way it lifted mine. Make sure you scroll to the bottom and pause the music.




Just seeing adult CHD survivors gives me such hope!

Blood Clots/Stroke (Email I received)

Blood Clots/Stroke

STROKE: Remember The 1st Three Letters.... S.T.R.

My nurse friend sent this and encouraged me to post it and spread the word. I agree. If everyone can remember something this simple, we could save some folks. Seriously.. Please read:

STROKE IDENTIFICATION:

During a BBQ, a friend stumbled and took a little fall - she assured everyone that she was fine (they offered to call paramedics) ....she said she had just tripped over a brick because of her new shoes.

They got her cleaned up and got her a new plate of food. While she appeared a bit shaken up, Ingrid went about enjoying herself the rest of the evening.

Ingrid's husband called later telling everyone that his wife had been taken to the hospital - (at 6:00 pm Ingrid passed away.) She had suffered a stroke at the BBQ. Had they known how to identify the signs of a stroke, perhaps Ingrid would be with us today. Some don't die.... they end up in a helpless, hopeless condition instead.

It only takes a minute to read this...

A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke... totally . He said the trick was getting a stroke recognized, diagnosed, and then getting the patient medically cared for within 3 hours, which is tough.

RECOGNIZING A STROKE

Thank God for the sense to remember the '3' steps, STR. Read and Learn!

Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer severe brain damage when people nearby fail to recognize the symptoms of a stroke .

Now doctors say a bystander can recognize a stroke by asking three simple questions:

S * Ask the individual to SMILE.
T * Ask the person to TALK and SPEAK A SIMPLE SENTENCE (Coherently)
(i.e. It is sunny out today)
R * Ask him or her to RAISE BOTH ARMS.

If he or she has trouble with ANY ONE of these tasks, call 911 immediately and describe the symptoms to the dispatcher.

New Sign of a Stroke -------- Stick out Your Tongue

NOTE: Another 'sign' of a stroke is this: Ask the person to 'stick' out his tongue.. If the tongue is 'crooked', if it goes to one side or the other , that is also an indication of a stroke.

A cardiologist says if everyone who gets this e-mail sends it to 10 people; you can bet that at least one life will be saved.


Most of you know my grandmother had a stroke back in May of this year. Thanks to the quick response of my mother, calling 911 and getting my grandma to the hospital quickly, she was able to undergo a CT scan and have the appropriate drugs administered to her which reveresed the effects of her stroke. Knowledge is power.....and can definintly save a life.

~Nana I love you with all my heart~

Yesterday we had the occupationl therapist and nutritionist over for a visit. The night before Arianna went to bed at 1am because she had a late nap, so I actually had to wake her up for this appointment and she wasn't happy. She did play with the OT, instead she just cried and sat on my lap. The nutritionist did get her measurements and she is weighing in at 21 pounds without any clothes or diaper!!! She is 81 cm in length and her head is growing well too....I can never keep up with that one.

Then we had the speech therapist come over and man was she impressed. I really need to get some video of her talking. It's just blowing us away at home much she is saying. I even bought her some of those alphabet letters for the bathtub and this morning I was holding up the letters pronouncing each one and she was saying them too. Of course, only a few but it's still amazing to me!

Then today we took her to the hospital for her follow up renal (kidney) ultrasound. For those who don't know...Arianna was born with both her kidneys (it's common for 22q kids to only have one kidney) but she had hydronephrosis of her left kidney. At our last ultrasound back in Sept. 07' this was resolved but the urologist wanted to wait and year and double check to make sure things are still looking good. The lady who did the ultrasound said everything looked good so that was reassuring. For once, I'm not worried about the test results but I'll still be picking up her results for my own records. I can't tell you how helpful our medical record book has been. She has seen so many doctors and when we see one of our specialists and they ask about a certain procedure, blood test, etc. I just whip out the ol' book and there is the answers. :) We go next month to see the urologist and hopefully that will be the last time we see him.

The rest of the week should be nice and relaxing with the exception of my doctor's appointment tomorrow. We might even have a fellow heart mom come over sometime this week to hang out. Her baby is 4 months old and also had tetralogy so it will be nice to get together and talk. I'm so curious how Arianna will do around a baby. I'll make sure to post some pictures.

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.