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!