Diamond Children's Medical Center Tent Event

Diamond Children's Medical Center held a tent event for the children. Mended Little Hearts of Tucson was given an invite so of course we took Arianna to have some fun!

The look on her face says it all...lol!

She loosened up once she made the tye-dye shirt
Played some games..

Rode a pony...

Even got her favorite Veggie Tales painted on her arm!

And what more would a 3-year old little girl want than to get her picture with Snow White!

This was MY personal favorite..

End result....AMAZING!!!

Of course after the festivities we ventured inside to check out the new lobby. Which is beautiful! I get so emotional when I'm there because I know it's only a matter of time before we are back here having her next heart surgery. I'm just so thankful that we will have Diamond Children's to utilize this time and a wonderful pediatric heart surgeon!

August Pics & Cardiology Update

I've been so bad about blogging and posting pictures.

Last month we took Arianna skating for the first time. She had a blast! It was alot of work for us but worth every minute of it.

Daddy & Devin

Arianna had her 6 month cardilogy update. She went home with a Holter monitor for 24 hours. We got the results back and everything was perfect! She had NO PVC's!!! Last year she had several so this was great news for us. :) We go back in February for her echo, which is the one I'm really nervous about. But for now, we will relax and enjoy every day!

Quick update

Devin is finally on the right medication. Thank you Prevacid!!! He is eating better and sleeping better at night. He does not have the 4 hours of screaming every night and actually smiles more! :)

Arianna is doing well. Started ballet again last week and counts down the days till she gets to go again. We are still waiting to get her speech therapy approved so no therapies going on at the moment which is kind of a nice break.

Just wanted to give a quick update!

DEAR REFLUX...YOU SUCK!!!

I know this blog has been about Arianna but it has truely become a place for me to come and put my thoughts down.

As you can tell from my title...we are dealing with reflux and IT SUCKS!!!

As I'm typing this Devin is SCREAMING his head off in the living room. Feeding has now become a challenge. He will start to eat and then he refluxes and arches his back, cries and then refuses to eat. Of course that just leaves him hungry so he is miserable.

On a positive note, we have started him on ranitidine (Zantac) for his reflux. We are giving it till Monday to see if it helps. If not then we will put him on Prilosec. I'm so relieved to finally be able to give him something.

I'm just completely overwhelmed with emotions when I can't calm my poor baby down and know he is in pain. I dealt with a little reflux (nasal regurgitation) with Arianna but it was nothing like this.

I did talk to the pediatrician today and the x-ray results were in and they said he has viral pneumonia. His peditrician doesn't believe that and says if it was the case he would be having fevers, which he is not. Which brings me to our lately diagnosis for Devin....Pectus Excavatum.

Pectus Excavatum is a depression or hollow caused when the sternum (breastbone) is abnormally pushed inward. The depression in the chest is due to abnormal growth of the cartilage that attaches the sternum to the ribs. This condition can give an inaccurate diagnosis of lung infections on x-ray....OR...he is possibly aspirating and we need to figure out which one it is.

We are going next Tuesday to see the pulmonologist. Nice thing is we already have wonderful doctors that have taken care of Arianna so we are going to see the same doctors for Devin. We are waiting for the hospital to call and schedule his upper GI test and appointment to see the GI doctor.

Well I have to get off now but I wanted to write a few things down while I had the chance. Thanks for checking on us.

Exhausted

So the past 2 nights I've let Devin sleep with us cause I'm breastfeeding and it seemed easier to just have him right there. I was also hoping it would mean I could sleep better. Well I was wrong! His breathing is so bad that I am pretty much up most the night trying to reposition him and get him comfortable. Then once I get his breathing sounding a little better his reflux starts acting up and that makes his breathing REALLY loud and he gets really cranky. I have to say this condition has to be one of the most scary things. They literally sound like they are gasping for air and his retractions can get REALLY bad sometimes. The mommy in me wants to start calling the doctors and pushing to get him in but then I'm scared that they will want to put him through all kinds of unneccesary tests.

Well Devin is crying...I'll update later

Devin's 5 Week Check up

Yesterday we took Devin for his 5 week check up. Our lil' chunker weighs 10lbs 4ozs!!! He has gained 3lbs already. I'm so not used to this type of weight gain but I can't complain.

So a little background info first. When we brought Devin home from the hospital we noticed he breathed a little funny. At his 2 week check up we asked the pediatrician and they said it was "periodic breathing" and would go away by 4 weeks of age. Something inside told me it was not just that but I decided to not worry about it. I figured they would just think I'm looking for problems since I had an older child with health issues.

Okay - So now forward to yesterdays pediatric appointment. We go in, get him undress, weighed and taken into a room. The nurse comes back in to recheck his respirations. I made the comment, "What did you have a hard time getting it over his loud breathing?" She immediatly gets concerned and asks if this was normal for him. I told her yes and she continues to freak out in front of me saying, "This is definintly not right." I get a little panicky cause at this point I realize his retractions are getting worse than before. So of course we wait another 15 minutes until the resident pediatrician comes in and I go over all my concerns with her. FINALLY 10 minutes later OUR pediatrician comes in.

Right away she watches him breath and says she thinks he has "laryngomalacia."

This is a picture of laryngomalacia seen during an exam.

Laryngomalacia is a softening of the tissues of the larynx (voice box) above the vocal cords. This softening causes the tissues to become floppy, and they may fall over the airway opening and partially block it. It is a common condition in infants.

So we are now being referred to a pulmonologist to see if this is indeed what Devin has. Our pedi did order chest xrays yesterday to make sure we weren't missing something.

Now on top of this, I believe Devin is dealing with "silent reflux." He doesn't spit-up but you can hear/see when it's happening. I've done some research and babies with larygnomalacia have a higher chance of having reflux due to the weakened tissues. So I put a call back into our pedi today and she is getting him referred to a GI specialist as well and ordering an upper GI study.

This all being said I'm living on edge here worried that he may stop breathing when sleeping. I asked if he needed an apnea machine and the pedi said no. I guess that's a good thing...right? We have learned he sleeps/breaths better when elevated so he needs a pillow. This is the same thing I had to do with Arianna.

So please keep Devin in your prayers. We want to find out exactly what is wrong and are believing God will heal whatever it is that is wrong. We have seen first hand with Arianna that prayer works!

Well I just wanted to give an update while he was resting. I'll update when we get our appointments set up.

4th of July!

I was finally feeling good enough to take the family to church this Sunday. We are in the process of looking for a new church and I think we might have found one! Arianna enjoyed the children's class which had about 8 kids. That is the biggest classroom size she has ever been in. It did take two attempts to stay in the class but she did and seemed to really enjoy it! After church they were offering hot dogs and hamburgers which was nice to feed the family before even leaving church. :) Plus...Arianna got some time to play with her BFF Alyssa!

After church we went home and baked a flag cake while Devin took his nap. Not bad for our first attempt.

Then we went to my moms for dinner before the fireworks.

Arianna & Poppy

4 weeks old!

I can't believe how BIG he is getting. I can't wait to take him to the peds next week and find out how much he weighs.

Some new things that Devin is doing is....coo'ing, tummy time (turned his head twice so far!), tracking with his eyes a little and making me fall in love with him more and more each day! :)

Life with 2

I have to admit adding the 2nd child isn't as hard as I thought it would be....thanks to a wonderful partner! However, that being said.....I'm EXHAUSTED!!! I remember the sleep deprevation with Arianna being ALOT worse but that was because of her medical issues. I am just so thankful Robert lets me catch some afternoon zzzz's when he gets home or I wouldn't make it through the evening. I just really hope this little guys gets some kind of feeding schedule down soon. I am exclusively breast feeding, which is going amazing, but he will eat anywhere from 1-3 hours depending on his mood. In the evening it's every hour until bedtime. I would like to get him a little more hungry before his last feeding in hopes that he would sleep longer but I read that breastfeed babies tend to cluster feed in the evening, especially in the first 6 weeks. So....once again I'm on my kids schedule and not mine.

Sister Love!

Arianna continues to love on her brother. I am really happy she is not showing any jealousy towards Devin. She will ask to hold him for a few minutes and will give him kisses throughout the day.

1st Family Picture

Bath Time

I know this blog has been about Arianna but it has now turned into a family blog. :)

Here are some pictures from Devin's first baths. Of course his first bath was a sponge bath. He hated having his body washed but LOVED getting his hair washed.

So content!

Here are pictures from his first real bath. He was totally content during the entire bath. Actually, he cried the second I took him out.

Arianna helping mommy :)

Ballet!

Arianna has definintly been doing alot of growing up lately. She started ballet this month and is LOVING it! She asks all week when she can go to ballet again and cries when we leave. I'm so happy this is a positive experience for her.

Lexi & Arianna

Since starting ballet she is now asking about going to school. I think it's just her missing speech therapy which was at the school but I've started looking into preschools since the developmental pediatrician thinks it would be good for her. As of right now I'm not 100% sure if we're going to enroll her this year or not but I'm getting a good idea whats out there.

Devin is here!

Sorry this is so late but I've been a little busy. :) Devin made his grand entrance into the world on June 10th at 2:22 a.m. weighing 7lbs 5ozs and 20.5 inches tall. I went into labor on my own on Wednesday afternoon so there was no need for induction! :) I wanted to post a few pictures from his birth and will upload more in the upcoming days. Man how these kiddos keep you busy.

Arianna LOVES her baby brother! This is the first time holding him. She would cry when he would cry at first but she is used to it now and just tells me when he is crying.

Sleeping peacefully in MY room! Man it was a WAY different experience this time around.

Daddy & Devin

So I look awful in this picture but its the first picture with me and my kids.

We did get the FISH test done on Devin to see if he has the 22q11.2 Deletion but so far he is not showing any symptoms of the disorder. We should get those results in a few weeks. Other than a little jaundice, he is doing amazing!

Miracle!!!

I forgot to update after Arianna's orthopedic appointment. We were going in for her routine scoliosis check-up. Walked in, got her x-ray done and then waited for the doctor to come in. He walked in with a surprising look on his face and said....

"Well I have no idea how this happened but she went from a 15 degree curve to a 5 degree curve."

I knew exactly how that happened. :) For months I've been praying for her spine to straighten out and it happened! God is so good! We have experienced yet another miracle in our daughters life.

We don't have to go back for another year! Praise God!

Now we are STILL waiting for Hanger to make her new orthotic inserts for her shoes and I'm getting really ticked off at them. Arianna is outgrowing her shoes and having alot more foot/knee pain and it's been almost a month since our appointment with them. They are making her custom inserts that are a little bigger than what she's used to but will be more supportive.

I have to run and make dinner but I wanted to update while I had a few minutes.

Developmental Pediatrics

So I got a call at 9am letting me know they scheduled Arianna for an appointment with the developmental pediatrician but it was at 10am THIS morning. We arrived late but what do you expect with only an hour notice.

Her physical exam was excellent. She did so well getting weighed, height checked, blood pressure and O2 sats. Everything looked perfect! My only concern was that she has not gained any weight.

The doctor did a full evaluation and discussed Arianna's history. She seemed rather concerned with Arianna's low muscle tone. She feels her motor skills are delayed which can cause frustration as she gets older. She was surprised Arianna is not being seen by a physical and occupational therapist. I was really shocked she felt Arianna needed them. So we have decided to get another PT/OT evaluation. Since Arianna is over 3 years old we can no longer get services through AzEIP and will have to try and get her approved at the Children's Clinic.

She also recommended we start her in ballet classes, swimming classes and anything that will keep her physically moving. This will help build her muscle tone and provide social skills she is longing for. So...Arianna is extremely happy we are looking into ballet classes!

The other big thing the doc wants us to do is put her in preschool. This is really hard for me to even think about but I know it would benefit Arianna tremendously. I have put a call into the immunologist to make sure she is healthy enough for preschool. I will also have to call pulmonolgy and get his okay as well. If everyone is good with it then we will be checking out preschools to start Arianna in the fall.

The best thing the doctor told me was how bright of a child Arianna was. She said we will reevaluate her again next year but for now she doesn't fell Arianna should have any learning problems.

Guess life is going to get really busy with Arianna again and with the new baby arriving in a few short weeks.

34 Weeks!

Of course I had to start off with a beautiful picture of Arianna!

So today marks my 34th week of pregnancy. I saw the doctor on Friday and she told me if I was to go into labor at this point they wouldn't even try to stop my labor. Kind of freaked us out. That being said, I went and bought everything I need for my hospital bag. :) Things are so well planned this time and a totally different experience than last time. Now we just need to put the finishing touchs on the nursery and we'll be ready for our little man!

Arianna is continuing to do well health wise. On the other hand, she is starting to REALLY push my buttons. Not sure if it's just the age or the baby arriving soon that is making her act out. Hope it's short lived.

Robert took the kids fishing today. Arianna didn't catch any fish but she was happy to pose for the camera!

Heart Walk 2010!

Today was the Heart Walk. Arianna has been talking about it for weeks and was really excited to go. I was advised by my doctor NOT to do the 3-mile walk but I decided to anyways. I know..I know...BAD mommy!

Here are some pictures from the walk. We went with our Mended Little Hearts of Tucson group and had a great turnout.

Make video montages at www.OneTrueMedia.com

1st time hitting a baseball!

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

I can't believe it...my baby can hit a baseball!!! She is only 3 1/2 years old. I'm so proud of her!!! If you know Robert you know how much of a baseball fan he is so that is totaly a Daddy/daughter thing. Arianna even asked Robert tonight before going to bed if they can do baseball again tomorrow.

**Sorry for the horrible video. This was taken on my camera**

Last month

Sorry for the lack of updates. I get so caught up on updating on Facebook I forget to post here. So let me catch up on the last month.

Arianna went in for dental work at the hospital a few weeks ago. She just had 6 cavities to fill but had to go the OR and be put completely under. :( She did really well before going back but afterwards was horrible. She freaked out and for some reason the nurse thought it would be better to wait 15 minutes to come and get me. I am SO upset about that. Here she is in her pre-op clothes...

Then Arianna finally had her 1st haircut ever! As you can see we only took a little bit off.

Then we have Easter which was alot of fun! We went to church and Arianna did an egg hunt with all the kids. Here she is with her friend Alyssa.

Then we went to my mom's for Easter lunch! Here is Arianna with her Grams and Nanny.

Then this past Sunday we had a "Baby Celebration" with our families! Basically, instead of the traditional baby shower we wanted to have a family BBQ. It was alot of fun but unfortunately I didn't get any pictures. (Mom you'll have to send me the ones you took.)

Today we went in for our follow-up fetal echo and everything looked great! We have finally picked out a name for our little man...Devin Robert! As of 31 weeks he is already weighing 4 1/2 lbs..BIG BOY! It's crazy cause Arianna weighed 4lbs 13ozs at birth which was 36 weeks. I can guess we will be having an 8-9 lb'er. The cutest thing on ultrasound was to see his full head of hair. I had no idea they could see hair on ultrasound. If you look at the picture below you can see his spiky hair!

Well...I think that is just about everything this past month. I hope you all are doing well. Thanks for stopping in and checking on us!

This weekend we went out to watch the Thunderbirds (from a distance) and Arianna loved being outside! The airplanes were a little loud for her. (Wendy I was wishing I had those ear muffs you had for Emma.)

As you can see by the picture my baby girl is growing up SO fast. She is constantly amazing us with all the new things she does or says. She is definintly one smart little girl.

We are currently isolating her because her day in the OR is approaching for her dental work and we don't want her to get sick. I hate knowing she will be in the OR and under anesthesia but at least it's just for dental work. She is scheduled for March 30th at 2:30pm. Not sure how I will keep her from eating or drinking all morning. Why do they schedule things like this in the afternoon?!?

As far as my pregnancy goes..we are now 27 weeks!!! I can't believe I'll be in the 3rd trimester next week. Time is flying by. I have had a couple trips to L&D the past 3 weeks but nothing to keep me there. I was put on nifedipine to help with the contractions so I hope that helps. I was on this med with Arianna and it only worked so well. I'm only on modified bed rest so I just take my days as they come and try not to over do it. Some days are harder than others but thankfully I have friends and family that help when I really need it!!

Thanks for checking in on us. We love hearing from everyone that stops by!