The next step..

The pulmonologist came in a few hours ago and did an examination. He doesn't feel this is pneumonia either but feels there must of been some underlying problem with the lungs to begin with, then possibly catching a viral infection caused her sats to drop and respiratory distress. He said there is nothing different they are going to do as far as treating her symptoms.

The plan, so to speak, will be to get her respiratory issues cleared up and hopefully breathing on room air. He said if she doesn't tolerate room air than he doesn't have a problem sending us home on a 1/8th of oxygen. They have spread her breathing treatments to every 3 hours which she seems to be tolerating just fine. The pulmonologist said if the treatments help then he will send us home with that as well.

The tests he wants done are in chronological order are: Swallow study, pH probe, upper GI study, CT scan of her lungs, and a bronchioscopy. They might do the swallow study and pH probe while we are here. The GI doctor will have to be called for those so we will see what he thinks tomorrow. For the other studies she will need to be fully recovered before doing, so we're probably looking at weeks out.

So we are left with no answers but are definintly in contact with the right doctors. I, of course, am getting nervous and praying that this will just pass and she will come off of oxygen and we can go home and chaulk this up to a bad case of pneumonia. We still haven't met with the immunologist but I'm hoping they get ahold of him tomorrow. I guess its all hit me like a ton of bricks when the doctor said this is an ACUTE problem. When I found out about her having DiGeorge Syndrome I researched the internet and got very scared with all the information I found out. I have never looked at my daughter as a sick child, but tonight I felt reality smacking me in the face. I am still believing and standing in the Word that she will be delivered from whatever she is battling. I know that God will get us through this time and this will be just one more thing we add to thing list of miracles that God has done for us. Right now we are just taking it one day at a time.

Check out my latest pics!

Me and Aunt Lissa

HAPPY BIRTHDAY!!

How do you get out of this thing?

CHEESE!

What's wrong?!?!

So we met with the resident pulmonologist and after doing an exam he does not think this is pneumonia. He is going to get the attending involved to due further testing. He mentioned the possibility of doing a pH probe but we won't know until we met with the attending. Right now we are just trying to keep her happy and saturations up.
On a exciting note..we spent the day with Aunt Lissa and its her birthday! We had birthday cupcakes and Arianna actually ate a few bites! Every time we try to get a nap in somone comes in and wakes her up. Right now she is watching her favorite movie, "Little People". These were the same movies she watched over and over when she had her surgery. I'm so glad this is keeping her happy and entertained. Having Aunt Lissa here today has been such a big help.
Well I'm going to get some lunch now and try to relax while she watches her movie. Thank you again for checking up on us.

Good news!

I can't tell you all enough, what a wonderful cardiologist we have. He took time yesterday to review her chest x-rays from the pediatrician visit and emailed me back telling me what it said. Then surprisingly about an hour ago he came to see us. He was very reasured that this isn't a heart issue and we are dealing with the lungs. He feels this is a good time to call in a pulmonologist so hopefully we will talk about that at rounds. He then mentioned it might be a good idea to keep her on oxygen at home when she sleeps. He will help transition us from the hospital to home.

She is currently on 2 liters and holding her sats in the high 90's. YIPEE!! Still receiving her breathing treatments and will get her next dose of antibiotics tonight.
Well my sister just got here and brought me breakfast so I'm going to go eat and get cleaned up while I have the help.

Thank you all for the prayers and support. I'll update again soon.

Peds floor

So last night at 2am they transferred us to the peds floor. By the time we got situated, had a breathing treatment, and calmed down, Arianna slept for 2 hours. It was the best two hours. They let us sleep in a pull out bed together. We are sitting here watching tv. We had no tv in the ER so this is passing some time.

She is still on 4 liters of oxygen but they plan on weaning her today. She is taking her milk and juice but won't eat, which I don't blame her. I feel so bad for her. She still sounds wheezy and breathing hard. Hopefully the antibiotics start taking affect today. I will update when we know more.

In the ER

Trying to put on a happy face.

Wow, where do I begin? Early this morning Arianna woke up very fussy and with labored breathing. I immediately checked her pulse ox and she was at 83%. I stayed up monitoring her and her numbers remained low and even dipped into the high 70's. I put a call into one of the cardiologists from the clinic and he said she was in respiratory distress and I needed to take her immediately to the ER.


When we got there she was satting at 84% and they put her on oxygen. They checked her sats again and was in the high 90's. We waited for 2 hours with a screaming baby just to wait another 2 hours before they did chest x-rays to see if she had pneumonia. The doctor, who by the way is a total ass, told me her x-ray wasn't good and showed some hazziness. She said this can either be pneumonia or signs of heart failure. So at this time we were really freaking out. They started breathing treatments and were going to start antibiotics. The breathing treatments really seem to help but only for a short period of time. She has been so miserable all day long and just cries and cries. By this time they had to up her oxygen to 4 liters to hold her numbers in the high 90's. They said she was going to be admitted but they were waiting for a room. They were going to call pediatric cardiology but they wanted to wait until we got situated in our room on the peds floor. Well hours go by and we were still sitting in the ER so they called the pediatric doctor to come evaluate Arianna. While giving her history Arianna seemed to be getting worse and worse. She was just laying flat on he back, staring at the ceiling with no expression on her face. Her numbers began to drop and she started looking pretty bad, they dropped to 74%....you better believe that got someones attention. I think this doctor, who is a resident, was scared out of her mind. By this time Arianna still hadn't received her antibiotics, no one had bothered to do anything for her. I am so glad this doctor was in the room when this happened. She immediatly had the attending ER doc in the room who was telling her that Arianna had already received her antibiotics. At that point I looked at her and wanted to slap her, I told her that she hadn't recieved anything and the nurses hadn't even started an IV. They told me that peds cardiology was called and Dr. Barber was on his way to do an echo. This was the same cardiologist who took care of her when she was born. So anxiously we sat here praying she wasn't in heart failure. The echo came back good, well good for her condition. Her left ventricle was vigourusly working, the right ventricle had more muscle thickening, and she has severe pulmonary insuffiency, but NO HEART FAILURE!! Thank God!

They are now thinking it has to be pneumonia, but NO ONE will confirm or deny that. They are still still giving her antibiotics. They wanted to check for sepsis because she had some signs of that, just upped her albuterol treatments to q. 2, which means, every 2 hours, and still on 4 liters of oxygen. They are hoping with a few days in the hospital getting fluids and oxygen that this will go away and we can taper her off the oxygen.

To top things off the peds floor is full so we are spending the night in the ER. Thankfully we are in a private room and sharing a bed together. So between the waking up every 2 hours for treatment and the loud ER, it will be a long night. I'm sure I forgot to type something, but its midnight and I need to try and sleep before they come in at 1am for her next treatment. We plan on being her for a few days, but I have the laptop so I'll keep you posted.

What's Next?

Please bare with me as I write tonight’s entry. I am so emotional right now, which happens from time to time.

So I take Arianna to her pediatrician this afternoon to get things checked out. They took some chest x-rays, which came back normal. This is wonderful news but it does not help us determine what is causing her low saturations. The pediatrician feels that this is not an acute problem and even though he thinks a referral to a pulmonologist would be a good idea, he wants to wait until after we see the cardiologist on Feb.20th. I agreed with him at the time, but now I’m not so sure. The cardiologist mentioned on the phone that if the x-ray came back normal than a CT would probably need to be done. So when I got home I emailed her cardiologist to let him know of today’s events. I’m hoping he will let me know that its either okay to wait until the 20th or to go ahead and get the referral. Either way I will feel better once I hear it from him. The pediatrician even went as far as mentioning that it’s possible that she might need supplemental oxygen if this is a heart issue. So that’s what gets me, you think she might have a heart problem but you want me to wait until the 20th to check this out. That’s why I sent the email to her cardiologist, even if it’s just to calm my nerves. It’s just hard when the pediatrician tells me not to worry but then goes on to say, well if you have heart issues it possible since the lungs work hand in hand with the heart, that you can have lung issues. What is a mother to do?!?!


I also told the pediatrician that her early interventionist wants a hearing test done, so we are getting a referral to an audiologist. Even though she passed her newborn screening, when your child has speech delays they recommend another test done after 1 year old.

Still no word about the swallow study, but the doctor was pushing the nurses today to get the ball rolling. This test could also check to see if she is aspirating which could cause lower saturations.

So as you see its just one thing at a time. I am praying that she didn’t catch a cold from the gym. She woke up from her nap today coughing and sounding kind of yucky. She is coughing in her crib as I type. God please don’t let this be another cold. It seems like she gets a cold once a month. I’ll be glad to get her immune studies done next week.


So I guess I let it get the best of me toda. It just breaks my heart that I have to worry about Arianna’s heart. I just want to worry about normal thinks like teething, or having diarrhea, not her heart function, if you know what I mean. I remember telling myself before her surgery that all we need to do is get past her surgery and everything will be fine. I am coming to terms that the worrying never goes away. I try not to get down about it but sometimes I just cannot help but cry.

Breakfast with Elmo

This morning we took Arianna to ‘Breakfast with Elmo’ at a local baby gym. This is the first time EVER to have her around that many children but she is so into Elmo and Arianna’s friend Lexi was going. The girls had a blast and Arianna was SO into Elmo. She sat on his lap and would keep walking up to him and screaming at him. This was a happy scream since she does not vocalize well, when she is excited and wants your attention she just screams. I got pretty paranoid hearing the kids and parents coughing and I was sanitizing like crazy. Arianna did some really good walking with the occasional bump from another child. I don’t think we’ll be doing that again anytime soon but it was nice to watch her being a kid and having fun. I did notice that a lot of younger kids were doing things that Arianna just started doing or isn’t even doing yet. There were so many little ones walking around so well and they had to be under a year old. I really try not to let this bother me, because she is doing so well. I became more aware of her speech delays but so happy she is able to communicate with sign language. The latest sign she learned is ‘again’, and she kept signing ‘again’ so go down the slide. It was SO cute! But all in all it was a great morning, got to hand out with our friends and got to do ‘normal’ things with Arianna.

We are still monitoring her pulse ox at home. Her levels were a lot better yesterday and that was a Lasix day so no surprise. This morning her levels were in the mid 90’s which was good. We just got home and laid her down for a nap and her levels are staying at 88%. She had lots of energy this morning so I’m not too worried. I’ll probably still call tomorrow and schedule an appointment for Tuesday with the pediatrician just to make sure things are ok.

Here are the pictures from this morning!

Don't know why she was pointing at her nose!

HEY...I'm not done with you!

Walking around like a big girl!

"Again, Again!"

Lexi & Ari having a blast!

Lexi having fun. Isn't she so cute?!?!

Tucson Lifestyle Magazine

I am so excited! Today I received the Tucson Lifestyle Magazine, which featured Arianna in the American Heart Assocation section. The article is below.

Look at how cute she looks!

This is what the article reads:

SURVIVOR STORY

Arianna West

Vanessa West was in her 17th week of pregnancy and just 21 years old when doctors gave her the news no expectant t mother wants to hear: her baby would require surgery soon after birth due to a congenital heart defect. What Vanessa quickly learned is that congenital heart defects are the most common type of major birth defects, afflicting 30,000 babies born each year. Her daughter Arianna West was born with Tetralogy of Fallot, a condition that includes a hole between the ventricles, and many levels of obstruction from the right ventricle to the lungs, known as pulmonary stenosis. Cardiologists waited until Arianna was six months old before repairing her tiny heart. Although Arianna’s heart continues to function, the one-year-old will eventually need another surgery to repair her heart’s valves. Vanessa, grateful for all the medical research that has allowed Arianna to live, remains hopeful that new research will help her daughter grow into a happy, healthy adult.

Phone call with cardiologist

First of all I have to say we have the BEST cardiologist ever! If your in Tucson and looking for a pediatric cardiologist you must see Dr. Klewer. God has put all the right doctors in our path over the past 13 months. So on to my post....We decided to leave a message for Dr. Klewer to tell him about Arianna's saturations, before we headed into the weekend. He returned my call within 1 hour and no once rushed me while on the phone, which most doctors tend to do. He said with Ariannas heart condition she should have saturations running between 95-100%. He asked is she had a cold of any kind, which I told him no. We saw him 5 weeks ago when she was first fighting that horrible virus/bronchitis she had. We had chest x-rays done then which ruled out pneumonia. He is now thinking she might of had pneumonia but since the x rays were done so early on that it probably wasn't detectable then. He feels Arianna has a partial collapsed lung which is causing her low oxygen saturations. I have never had pneumonia but apparently the affects can linger for a few weeks. He wants us to keep monitoring her O2 sats and if she gets worse over the weekend then take her to the ER. If she still hasn't improved by next week then take her to the pediatrician to get another chest x-ray done. He asked if we had a pulmonologist, which luckely we don't, but he said if the chest x-ray comes back normal then we might need to go see one. If her sats are staying this low then a CT scan might need to be done. Then he goes on to say 'don't worry', yeah OKAY! We have her hooked up to the pulse ox right now and she is sating steadily at 88-89% while sleeping. This is lower than yesterday so we will keep a close eye on her.

I did tell him the reason for getting the monitor was for poor eating and he is wondering if she is aspirating whil eating. There is such a thing as aspiration pneumonia so its quit possible. I'm now wondering if the swallow study would show if she aspirates while eating. Still haven't scheduled that test so I'll be calling them on Monday to follow up.

Dr. Klewer then went on to tell me he received my email I sent the other day about the support group. I am trying to get flyers out to his other clinic at the multi-specialty center. He said there is a nurse who was very active in supporting the previous groups and she would be happy to get the word out about Mended Little Hearts. He went on to tell me that he has received an email from Kimberly Russell who is a board memeber for the Adult Congenital Heart Association. She was born in 1960 with a single ventricle, pulmonary atresia, and chronic cyanosis. To find out more about her you can click on the link and go to her name. Dr. Klewer thinks once we get the support group going and having regular meetings that we might be able to get Kimberly to attend and speak at our meeting. I am so amazed at how Dr. Klewer is already getting speakers ready for our meetings. HOW EXCITING!

We'll as I sit here typing Arianna woke up and wanted to be held by Daddy while she sleeps. I am beginning to think this is a lung issue because her sats came up to 94% while being held in the upright position. I have a sense of relief that it most likely isn't a heart issue. I can handle dealing with that alot better. She is on lasix which she takes every other day and since today is the off day and her sats are worse, that just confirms things in my mind.

Oh one more thing, we met with Sherri today from early intervention and she was very pleased with Arianna's progress. She has found us a speech therapist so we should be hearing from her soon to set up our first meeting. We talked about the possibility of needing to continue PT because of Arianna's low muscle tone. She still likes to sit in the 'W' position which is a sign of kids with low muscle tone, then we noticed she has issues abducting (twisting her torso) to the right. She can do it easily on the left but has issues on the right. This goes hand in hand with her earlier issues of rotating her right arm inward. So with all this said we are going to get PT going again. Looks like our days will be filled with more therapy visits.

I better get going, have to run to the store to get my baby some milk. I'll update more this weekend.

Worries of a heart mom

Check out my new toy!

I hope this makes sense cause its pretty late.

We received the pulse oximeter today so I started recording Arianna's saturation levels. We need to get baseline sats to know what is normal and what is not. The first reading was right before her afternoon nap which read 94%. I decided to keep her connected through her nap so I could get an idea of where she sats while sleeping. She immediatly went down to 91% then stayed at 90% for about 30 minutes. She dipped down to 87% a few times but came right back up, so not sure how accurate that was.

When she woke up she immediatly went up to 93%. I let her down to play and she was very calm at this point, barely crawling around. She stayed between 88-95% while playing. As she woke up more she started getting up and taking steps, standing, and moving around more. She immediatly started desatting and went all the way down to 84%. This kind of freaked me out! Any heart mom can relate. So I took the darn thing off cause I REFUSE to let a monitor control my life. I think having this machine is a good and bad idea for me.

The whole reason for the pulse oximeter in the first place was to see if she desats when eating. So I got dinner ready and man was she HUNGRY! I get so excited to see her scarf down food. She ate 3/4 of a hotdog and 1/2 cup of spaghetti. That sure was a new experience having a pulse ox machine at the table. She stayed at 90% while eating with occasional drops to 88%. There was 2 drops to 84% which was when she was drinking from her sippy cup.

We finished our night playing on the floor and waiting for Daddy to get home from work. She was so tired but she was able to stay awake just in time to see Daddy. That was all she needed to make her want to stay awake. Normally in the evening Arianna does her walking from Mommy to Daddy so I wanted to hook her up and see how she does doing actual walking. She was resting at 93-94% while sitting in Daddy's lap then as soon as she started walking back and forth her levels dropped. She stayed in the 80's the entire time with the lowest number being 84%. So this is now freaking me out. I know I shouldn't be but it is.

So the things running through my mind are:

1. If she is desatting like this when walking, shouldn't she be on oxygen? Her sats were at 84% when the doctors decided it was time for her surgery. One thing I do know is that it's not good to have lack of oxygen to the brain.

2. How low will they let her saturations get before needing to do some kind of intervention.

3. Is the pulmonary valve conduit the next step for Arianna?

So if any of my heart moms have information they want to share with me on this, please do so. I guess it hit me tonight like a ton of bricks that just because we made it through the first surgery doesn't mean we are out of the woods. This is something Arianna will have to deal with for the rest of her life. It just breaks my heart when I think of that. I would give anything in this world to change places with her. I honestly don't think I could handle another open-heart surgery. I pray to God that isn't something that needs to be done in the near future. This is the hardest part about her condition is that no one can give me a timeline on when she needs a valve placed. They said it could me 1, 3, 10, or even 20 years, it just all depends on how Arianna does. So we have our next appointment with the cardiologist on Feb. 20th and I am now very anxious to find out what he has to say about this. I am refraining from emailing him, but if I notice her level staying low like that when she plays I think I just might have to.

Oh yeah, on more thing, and to top it off I receive a reminder in the mail today about Arianna's appointment with the immunologist on Feb. 1st. I can't believe its already been 6 months since we've seen him last. We will be doing a full panel on her to see how her immune system is functioning and find out if we get the clearance to give her the live vaccines. I am believing that her numbers will all come back good and we can do yearly visits from now on.

Think thats about it. We are meeting with Sherri, early interventionist, tomorrow so always excited to show her what Arianna is doing. I think she might of found us a speech therapist finally!!! I'll let you know how that goes.

Oh yeah, Arianna got her RSV shots today and was such a trooper. I have decided from now on to take suckers for her on those days. I feel so bad cause she just screamed every time the nurse came near her. At the end the nurse was having me check her temp and connect her blood pressure cuff. So on the way home I had to stop and get her McDonald's. She had 4 french fries and a few bites of a chicken nugget. The look on her face when she realized we got french fries was priceless! Wish I had a picture of that, but I do have a picture of her drinking from her first juice box!

I think I like this McDonald's thing!

Heart Ball

I just received an email from the Director of Communications & Marketing at the American Heart Association and wanted to share what she said.

She and the other people at the AHA were very impressed with my speech last week at the CEO breakfast. They are thinking of incorporating some of my comments into the script for the Heart Ball which is held on Feb 2nd. They are doing a special piece on Children' Health and wanted to know if I had speaking points written down that I could share with them.

I can't explain how excited I am right now. The CEO breakfast was the first step I took in bringing awareness to the community and even though it was a small group of people, there are doors being opened for larger things. The Heart Ball is a huge things in our community and I am so honored that they would want to incorporate my notes. It doesn't matter whose the one saying them as long as they are said.

We need to be a voice for those who don't have one. I have been battling with the loss of sweet baby Kate. She was such a blessing and even though we only knew her for a short time I felt as if she was family. I feel like I need to do things in honor of all the children that have lost the battle against CHDs and the ones still fighting.

Doctor in agreement

I just got off the phone with the nurse from our pediatricians office. She spoke with Dr. Clemens and he feels that both the swallow study and pulse oximeter is a good idea. I should hear back from the clinic today with the go ahead to schedule the swallow study. And the nurse is putting in orders for the pulse oximeter, so the company should be giving me a call today or tomorrow. I am so relived to finally be getting a pulse oximeter. I'm hoping to get the equipment before our next cardiolgist appointment so we can have our baseline sats for him.

So enough of the medical stuff. Arianna is doing great! She is walking all over the place. When Daddy gets home from work she likes to walk from couch to couch and laughs the entire time. She is so adorable, I just thank God every day for such a beautiful and healthy little girl. She is working on cutting her 3rd tooth so eating hasn't been going very well. We saw Janet, our OT, this morning and she just told us to keep up the jaw strengthening exercises. She says this is just the pattern with Arianna and to keep offering her food daily and know that some days will be better than others. I will be curious to see what her saturations are during eating.

I think that pretty much covers it for us. I have been getting more flyers out for the support group and making some really good contacts with different organizations. I have been trying to get my schooling going again. For those who don't know I'm training to become a certified medical transcriptionist. I started in Feb. 06' because I knew I needed to stay at home with Arianna. It is slow going at times with a 13 month old but I know it will pay off in the long run. Well I better get off of here since she is sleepin and this is precious study time.

Take Care & God Bless!

What's Happening...

Just an update on whats happening around here.

Arianna is getting better at taking some steps. She can actually take about 8-9 steps then falls down. She is so determined, it just blesses my heart so much to just watch her. I know she will be walking around soon.

Yesterday she cut her second tooth and tonight she is working on getting her third. I get so excited every time I see a new white speck on her gums! My baby girl is growing up.

This afternoon Arianna and myself went to the Children’s Clinic and gave the social worker flyers for the support group. We also stopped by Pilot Parents, which is located in the same building and told them about Mended Little Hearts. I spoke with the executive director who was very excited about the group. She is putting up flyers at the clinic and also putting our information on their website. I told her we don’t have a meeting place yet but once I get a few families interested then I will work on that. She told me to talk to the administrators at the Children’s Clinic and ask them to provide us a room for our meetings. They allow other support groups to use their facilities but sometimes it can be hard getting in unless your associated with the clinic somehow. She then told me if they give me a hard time she will talk to them personally and help us get in. God is opening doors for Mended Little Hearts and I am so excited.

Earlier this morning I had called a local pediatric cardiology office and told them about Mended Little Hearts and asked if I could drop off some flyers. The office manager said yes, so Arianna and myself went by to drop them off. When we got to the office we waited a few minutes then a young boy walked in with his mom. Arianna was immediately trying to get out of my arms so she could go play with him. It was so cute. She actually walked the most I’ve ever seen her just to get to this little boy. He was so cute and got on the floor to talk to her. It feels so good to see her interact with another child because she has been isolated from so much. I spoke with the office manager about the support group and she was really nice and really excited about the group as well. She asked if I wanted to meet the two doctors and I was amazed they could take a few minutes to speak with me. We chatted for about 5 minutes and they told me they have a few families who have asked about a support group and they are going to give them a call. They asked about Arianna’s heart defect, asked who did the surgery, who is her cardiologist. They even gave me some medical websites, which are medically correct so to speak, as far as learning about other CHDs and treatment options. These two doctors were so nice and it just surprised me how they both stopped everything they were doing just to talk with me for a few minutes. You don’t get that from many people nowadays. They said they are behind me 100% and looking forward to what will happen in the upcoming months. I walked out of that office being reassured that I am doing the right thing. I am so excited and nervous at the same time. I know this may turn into a big project but I believe God will work everything out…look at how things are already going.

I guess I just wanted to share those things with you all. If God puts something on your heart, don’t back down because it seems too big or to hard. All things are possible through Christ who strengthens me!

AHA Breakfast

Arianna, Mommy, and Mayor Walkup

This morning we attended the American Heart Association breakfast to promote the 2008 Heart Walk and I got an opportunity to share Arianna's story. I wanted to bring awareness to the public about congenital heart defects. Too many people take their health for granted not realizing how many kids are out there fighting for their lives. This is something Arianna will have to deal with the rest of her life. If I touched just one person today than it was worth it. Mayor Walkup was the keynote speaker and then I went up after him. We were able to speak with him and found out that his granddaughter was also born with a CHD and had open-heart surgery at 2 years old. He asked if Arianna had a scar on her chest and I showed off her zipper. He said, "This is a badge of honor and she is a very brave girl." I was so touched by him and feel like he truly understands what we went through as a family. Then his assistant told me it wasn't until her brother was 16 years old that they discovered his heart defect. He had open-heart surgery at 16 and today is in his 50's and living a full life. It was so nice to speak with other families that have been affected by CHDs, and who knew it would be the Mayor of Tucson.


Since the AHA is campaining their 2008 Heart Walk, which will take place on May 3rd, we will be getting a group organized to participate in the walk. If you live in Tucson and would like to get involved please contact me.

This leads me to my next subject. I have decided to start a local support group for CHD families. I have contacted Mended Little Hearts and decided to work with them in forming this group. This is still in the beginning stages and I am trying to get the word out about the new group. I have been in contact with Arianna's cardiologist and he is willing to be a clinical liason for the group and help out any way needed. Once again this man shows what a great doctor he is and how blessed we are to have him in our life. The AHA asked today if they could do a newspaper article on Arianna to promote the AHA Heart Walk in the next few months. This will be another great way to bring awareness to the community and at the same time get the word out about Mended Little Hearts. I am very excited and looking forward to what great things 2008 will bring. Last year we spent most our time feeling scared, alone, and overwhelmed with emotions as Arianna went through surgery. Starting this year I want to bring support to other CHD families in Tucson. I look forward to meeting other heart families and sharing our experiences together. You may never realize what you capable of until you step out and try. Please keep me in your prayers as I embark on this new journey.

Thank you all for stopping by and checking on us. Please keep our new heart buddy, Drew, in your prayers. He goes in tomorrow for his heart cath and I know this is a stressful time for little Drew and his family. We put him in God's hands and know that tomorrow they will receive a good report.

Prayers for Isaac

I have another prayer request for all my prayer warriors out there. Our heart buddy, Isaac, is heading out to Stanford tomorrow to prepare for his next open-heart surgery. This will be his third open-heart surgery in 6 months. He is such a strong little man and in need of some prayers. If you would like to leave a message for his family, here is his link Isaac. Kathy, you can get through this, just put your faith in God and he will take care of the rest.

Another Angel in Heaven

Kate earned her angel wings this morning at 10:30am. She was in her mommy's arms when God called her home. Please keep the Layman family in your prayers as they go through this rough time. You are so greatly missed sweet Kate.

Prayers for Kate

Please pray for one of our heart friends, Kate. She is in heart failure and they think she only has a few days left. There is nothing they can do surgically and her body keeps retaining fluid. The family has decided to keep her in the hospital to keep the pain under control. I have become so attached to Miss Kate and my heart truly aches tonight after reading the blog. If you want to leave an encouraging message on her blog it is http://www.layman4.blogspot.com/

More Janet Time!

Here's the picture of the day. Arianna just loves her doggy Angel!

This morning we had Janet, our OT, out at the house. She helped feed Arianna breakfast and threw out some more ideas on how to keep her attention on eating. She asked how long she normally eats and I told her I can keep her eating, or at least at the table, for maybe 10-15 minutes. She told me she was talking with a friend who is a nurse at one of the local hospitals in town and works with with peds. She told her about Arianna's situation with her eating and asked what she thought. This nurse apparently works alot with heart kids so she knows alot about them. She said sometimes heat kids have a drop in there pulse ox when eating, which causes fatigue and the child stops eating. She was going to do some research on TOF and get back with Janet, since all heart defects are different and effect children diffferently. Today Arianna sat at the table for maybe 25 minutes eating then wanted down. We played on the floor with her and about 5 minutes later she started showing showing signs that she was hungry. When I asked her if she was hungry she signing 'eat' so we gave her some crackers to eat. This made Janet feel more adament about getting her pulse ox checked while eating. She said she is showing signs of fatigue and needs this to be checked out. This could also explain Arianna's need for longer naps lately. Over the past 1-2 weeks I have noticed an increase in her nap time and at one instance she slept from 6:15pm till 7:45am. When I tried to wake her up she acted very out of it and wouldn't wake up. I have been worried about this lately and hoping this was just a normal thing for a heart child. I know the older they get the more active they are and their bodys will require more rest. We don't meet with the cardiolgist until next month so I was trying to wait until then to talk about this. Janet is going to contact Arianna's pediatrician about the pulse ox machine and see if we can get one for the house. If she doesn't get a response from him then she will contact the cardiologist.


The other thing she was wanting to get done was a swallow study. The swallow study is a x-ray exam that allows us to see how the swallowing mechanism works using barium. Janet will also be talking to the pediatricaian about getting a referral for this test. Normally a speech therapist recommends this test but since we are having difficulty getting a speech therapist, Janet is recommending the test. The same nurse that suggested the pulse ox to be checked also suggested the swallow study to Janet. She told Janet that sometimes when kids have heart surgery they can damage some muscles that help with swallowing. This could very well be the instance with Arianna.


I am so thankful for Janet and all the extra looking into that she is doing. We definintly have seen an appetite increase with Arianna but for some reason she cannot take in alot of foods. We are trying to do everything we can to avoid a feeding tube and Janet is definintly working with us on that. Arianna has really become attached to her and kept giving her hugs before she left. I never knew how close you could become to these therapists, they are almost like a part of our family. Always there for us and willing to go the extra mile if needed.


One more thing Janet did notice today was Arianna's low muscle tone. She says that she has built more over the past few months but is still very wobbly in her standing and overall upper body stregnth. She asked if we were still seeing PT and I told her we only met with PT once and she didn't feel like we needed follow up. Janet isn't too concerned right now and said this should improve with time. Now I am begaining to wonder if we should have continued PT. I guess we'll just keep an eye on it and if Janet see's it not improving then we can reccomeend another PT eval and get ongoing therapy. Right now we are really trying to focus on her eating and putting some weight on her. Right now we just wait to hear from Janet, or the pediatrician, and keep doing what we are doing.


While Janet was here Arianna signed 'book' for the first time. Janet asked how many words she can sign and we figured out it to be 13 words. Here is a list of the words that she can sign: Milk, eat/food, banana, more, all done, hi, bye, dog, cat, fish, thank you, shoes, and book. I have a feeling I'm missing another one but I didn't realize how much she did sign. Its like she is picking up a new sign every week. I will have to buy the Signing Time videos soon to keep up with her. She has the baby signing times and is watching one right now.

Thanks for checking on us today and we'll post again soon!

To eat or not to eat....

I am starting to feel the stress over Arianna’s eating creeping back up. She has been refusing a lot of foods lately and not taking enough calories in to grow. For the past week she has been retching, but I think she might still have some drainage from the cold a few weeks ago. I know I still have some drainage from time to time which bothers my throat. We have had some throwing up lately when she does the retching so I hope this clears up so we can keep those precious calories down. Yesterday she decided to eat a chicken nugget all by herself. Normally I have to feed her small bites or hold it so she can take a bite of it, but not last night. Check out the pictures of her eating all by herself. That was dinner for her last night 1 and a half chicken nuggets and 1 french fry.

We were in total shock watching her eat this!

Is this too much? (Silly Girl!)

Hey Mom, look at me!

Then today we are back to not eating. She did take 19 ounces of milk which was good. She kept signing ‘eat’ all day but the only thing she will eat is gold fish, cheetos, or crackers. That is good food but its such a small amount and has hardly any good nutritional value. We are back to trying to make 2 different meals at a time because you never know what she likes from day to day. I know a lot of people tell me that kids get picky around this age so maybe its just a normal toddler thing, who knows?

Normally we only see the OT twice a month but since Arianna didn’t have any weight gain last month she has decided to come again tomorrow. This will give her an opportunity to see how Arianna’s feeding is going and help with ideas on what else to feed her at this point. I’ll let you know how that goes.

Besides the eating battle, Arianna has been doing great. She is doing a lot of mimicking me when I talk to her. I have even noticed that she says “mmmmm” when she sees something she wants to eat. I have been saying ‘yummy’ during eating time and I think she is trying to say it but gets only the ‘mmy’ part out. And when we see a cat I say ‘kitty kitty’ and she trys to mimick me, it’s too cute. I have been trying to get a better idea on what syllables she says so I can start working more on her speech. We still haven’t gotten a speech therapist. Apparently there isn’t a lot of them in our area so its taking longer than we expected. Hopefully someone can start coming out soon. I am just so thankful for the sign language, which has really been helping with the communication. She is picking up so much. I have learned more myself and just learned how to sign one of the songs we sing at church. Arianna loves music so I’m thinking I can work on the sign language and speech through music.

We have noticed a huge jump in the way she thinks. She problem solves well and a very determined little girl when it comes to anything. Check her out trying to open the fridge.

She has also started to become quite fond of strangers and even willing to go with them if I let her. One of the ushers from church is a very kind man named, Spud, and Arianna just loves him. He was at the Aglow meeting and she just went right to him. Then at the meeting she kept wanting to go with this lady there that we have never meet. I’m just glad she can't walk yet cause she would be trying to go off with strangers.

She has also been more into daddy lately, which really blesses his heart. I just watch the two of them together and I can not belive how blessed I am. I have a wonderful man who I love dearly and such an amazing daughter that has tought me so much in her short life. I don’t think life could get any better than this. I don’t need a fancy car, a nice house, or a lot of money, I have everything I need right here. I am so looking forward to what 2008 has in store for us!

Aglow Meeting

This morning I went to an Aglow meeting. This is an organization of Christian woman who get together and having prayer meetings. The president of the Tucson organization asked if I would come and speak at todays meeting. I was able to share with these women all the miracles that have happened in Arianna's life. This was a wonderful experience for me. We had a morning full of worship and prayer. We prayed over Arianna to recieve complete healing in all areas of her body. If you read this Janice, thank you for allowing me the opportunity to share our testimony with all of you. God can do alot of great things in your life if you allow him to.

Talked with neurologist

This morning I left a message for the neurologist and at 5:30pm I received a call back. For those who may not know, Arianna has a sacral dimple, which can be a sign of a tethered cord or other anomalies. We had an MRI done in December to check her full spine and also her brain since kids with DiGeorge Syndrome can have brain anomalies as well. The results came back negative for the tethered cord, praise God! She has a ‘butterfly vertebra’ of her T10, which is around the middle of your back. He said this mean her vertebra was not formed correctly and has the shape of a butterfly when a normal vertebra has a round shape. I asked if there are complications that can arise from this such as scoliosis. He said he cannot say since he is not a scoliosis doctor. So I asked, “Okay then who is?” He said we would have to see an orthopedics for that. He did say in plain terms, “If you are building with block and you have a block out of line, you will eventually have a shift. This is the same thing with the butterfly vertebra.” He didn’t feel we needed to see an orthopedic right away but is definitely something she will need to be followed up on as she gets older. He said it is worth discussing with our pediatrician at our next visit which is next month. He said from a neurology standpoint the vertebra isn’t pressing on any nerves and she wasn’t showing any neurological problems. I asked about things to look for and he said to keep a close eye on back pain, posture, and if one shoulder is higher than the other. I asked about further followup that would be needed. He said since they know what is already there then a simple back x-ray would give us the information we needed but that can be done by her primary.

I did asked about the brain scan but he didn’t have the scan in front of him. Isn’t that nice you would think since he is calling about the results he would have ALL the results. He asked when the brain scan was done and I thought….HELLO, at the same time, don’t you know anything about my daughter. But oh well, we are all human. Moving on… So I read the results to him that had me concerned. The part that I didn’t understand said, “Incidental note is made of cavum septum pellucidum and cavum vergae.” He said the ‘cavum septum pellucidum’ means there is a thin membrane between the lateral ventricles that are filled with fluid. The ‘cavum vergae’ is just an extension off of that. I asked if this was normal and he said yes. It does not affect the blood flow and nothing to worry about. Some people have it and some don’t. I asked if this will cause any problems and he said no. I asked if there was anything that indicated why she has a speech delay and he said there are no structural findings that can indicate why people have speech delays or mental retardation. It is something on the microscopic level and we already know she has the 22q deletion, which is the cause for all her medical problems.

I still don’t feel very educated about the subject so I’ll probably continue to do some research myself and TRY not to dwell upon it. The most important thing is that she does not have a tethered cord, no scoliosis, and brain scan looks good. I have already put the butterfly vertebra in Gods hands and will let him work on that himself.

We have officially been discharged from the neurologist and praise God for giving us one more doctor we can check off our list. HALLELUJAH! Isn’t God so good?!?!

Arianna has had so many medical miracles and I know its because I put all my trust in the Lord. He is using my daughter as a tool to share how wonderful he is. I can still have my moments were I get down about her having a genetic disorder but I will not allow it to control my life. I have a fun, loving, energetic, beautiful 13 month old daughter who is amazing doctors left and right. Like I have said before we’re just taking things one specialist at a time and one miracle at a time.

God Bless!

MacKinzie Kline

I just came across this website and had to share it with you. This is the young girl who is the spokesperson for the Children's Heart Foundation. Amazing little girl!

http://www.mackline.com/

Visit with nutritionist

Today we had Ellen, Arianna’s nutritionist, come out to the house to do the monthly check in. I wasn’t to happy to hear that Arianna had absolutely no growth this month. Her weight is still 17 pounds, length 72 ½ cm, and head 44 ¼ cm. Ellen strongly believes if it wasn’t for her getting sick she would of gained some weight. The month before she had a 7 oz weight gain and the month before that was a 12 oz gain. It’s a little disappointing but I’m glad she didn’t lose any weight. We will continue to keep at it and hope next month is a big gain. Arianna is doing fairly well with her feedings but definitely not enough to put much weight on her. She has really been into drinking yogurt smoothies, which is good cause I pack on a lot of calories with the milk and duocal. Ellen felt it was time to switch her over to whole milk. We are to add 8 oz of milk and 1 ½ scoops formula to boost the calories, and then I can give her 4 ozs at a time. Since she has been on a 27 calorie formula if we just switched her to whole milk alone she would lose 33 calories per 4 ounce bottle. With her no gain this month we definitely don’t want to skimp out on the calories.

Then I got a call from the GI clinic and they had to cancel her appointment we had scheduled for this week. The next available was for Feb. 28th. I was a little blown away that I had scheduled this appointment a month in advance and now they are rescheduling us for the end of February. But I guess this is a good thing since Arianna didn’t gain any weight. The GI doctor would not be too happy and I’m sure the feeding tube talk would come up again. This gives us some time to work more with Arianna and see how the transition to whole milk goes. So far it’s been good today with just a runny diaper. (Eeeww, I know, sorry!) Hopefully that works itself out.

Still no word from the neurologist. It’s almost like trying to get ahold of the President. I just have a few questions and it would be nice to get some answers. Maybe I’ll try calling again tomorrow.

Well I hear my baby girl crying so better run….

American Heart Association

When I first found out about Arianna’s heart defect, I immediately turned to the internet to look for a local support group. To my surprise there wasn’t one and I spent the months leading up to her surgery being very scared and alone. Yes I had my family and I couldn’t of done it without them but I needed to connect with other CHD families. We went through her surgery and when we were finally home I felt this huge sense of relief. At that point I decided I wanted to make some contacts within the community and let them know if they ever had a CHD family looking for support then they could give out my number. I immediately contacted the American Heart Association (AHA) and asked if they did any kind of events for CHD families. I was directed to the Heart Walk coordinator who asked if I would be willing to come into the office and have a meet-and-greet with the facility. So Arianna and myself went to the local office and had a nice little meeting. I got to share my experience with them and gave them my information to pass on to anyone who may need it. They asked if I would ever be willing to speak at local events that come up throughout the year. I told them yes and then went on my way.

To my surprise in November I got a call from them asking if they could use Arianna as a survivor story in a local magazine, which happens to be the magazine company my mom works for! I was so excited and honored that anyone would want to do an article on my baby. They had a photographer come out last month and they composed a short article on Arianna. The magazine will be coming out in February, however, I just got the rough draft from my mom today, so as soon as I can get it scanned I’ll have to upload it so you all can see it.

Then about 2 weeks ago I get a call from the Heart Walk organizer and she wanted to know if I would be willing to speak at a local breakfast event to promote the 2008 Heart Walk. I have heard from many people that the AHA only donates one penny of every dollar to CHD research. So at first I was skeptical and asked if someone could give me a figure for what they contribute to CHD research. I didn’t hear anything until yesterday the same lady called back to see if I was going to do the speech. I told her I haven’t heard back from anyone so I hadn’t made up my mind. She was able to find the 2006 budget and this is what she said. “Arizona raised 1.2 million dollars and the national headquarters gave back 1.7 million dollars in grant money.” I told her that’s great but what went to the children. She said, “11 million dollars went to pediatric research throughout the US.” She went on to explain that research being done in other states does benefit Arianna and I told her I completely agree. I told her I needed some time and I would call her back tomorrow. I thought and prayed hard on this and God told me that it’s not the dollar amount that matters but the act of giving to the community. You may ask, “Well what are you giving?”, I’m giving a new way of looking at heart disease. When people think of heart disease they think of the older generation who acquire heart disease, not baby that are born with it. These children go through a lifetime of surgeries, heart caths, medications, and sometimes-even transplants. We need more to be done for these children. I know my daughter’s life depends on it. Now whether it’s 11 million dollars or 100 million dollars it needs to be brought to the public’s attention. All things start out small, but it’s the faith of just one that can turn it into something greater. I have put my faith in God and will let him lead me wherever I should go. The first place he has lead me is to the AHA Heart Walk breakfast, which is being held on Jan. 17th.

I am a big supporter of the Children’s Heart Foundation. (You can get the link from the link section of my blog.) This organization is completely dedicated to funding congenital heart defect research. I have already contacted this organization to try and get involved and even possibly establish an Arizona chapter since there isn’t one yet, but was told there was already someone working on that and they will forward my information. I have yet to hear back from them so I’m leaving that one in God’s hands.

My girl is back!

Not completely but glad she is feeling better. She still has a runny nose and slight cough, which is worse at bedtime Her eating has decreased dramatically. I'm hoping she picks back up soon. She was on a 5 day streak of good eating last week and since she got a cold she isn't eating much.

We are getting ready to head out to Aunt Lissa's to play with Bryce and Shawn, Arianna's cousins. Please keep our friend Kate in your prayers. She is in the hospital having a hard time recovering from open-heart surgery. You can get her blog from the links on the side.

God Bless,

Vanessa

Still feeling yucky

Arianna had a really rough night last night. She cryed and coughed all night and wanted to be bounced, hence no sleep for momma. It's okay, I have to be thankful for even having a child to hold and take care of, so many families have lost their children to childhood diseases.

This morning I completely forgot we had a meeting with Janet, Arianna's occupational therapist, so I looked quite surprised when she knocked on the door. We talked about the latest stuff going on with Arianna and she was in shock to hear about her eating. She stills wants to work with her every other week. At this point she won't feed herself much and hates the highchair. So she wants to work on that with us and getting her into more of a routine, but for now we are just praying she keeps up the eating. Of course with her being sick she hasn't eaten much so we'll see how she does in the next few days. Our next meeting with Janet will be next week along with the nutritionist.

I checked this morning and I think she is working on getting 3 more teeth. She has a low-grade fever, runny nose, cough, and has thrown up about 4 times today. She seemed a little better this evening while she played with Daddy, but its now midnight and she back to feeling horrible and not wanting to lay down. I pray this passes quickly, she just got over a nasty stomach flu a few weeks ago.

HAPPY NEW YEAR!

We spent New Years Eve at Robert's parents house with his family. We had a great time and stayed up till 3am. Here is a picture of Arianna ringing in the new year. She was so tired but still stayed up till 1am. This morning she woke up with a runny nose, cough and acting really irritable. This evening she was drooling really bad and I think she is getting another tooth. Here I couldn't wait till she got her first tooth and know they are all coming in at the same time.

I wanted to share something with you all. There is this online company named Bad Egg Designs which is doing a t-shirt fundraiser for ill kids. If you go to http://www.badeggdesigns.com/shirts.html you can click on the link to see which children are being sponsered. There are 3 of are friends on there: Madison, Maggie, and Zachary. Check out the different shirts you can order and you can specify which child you want the donation to go to.