All Things Izzy

sNOw School but lots of fun!

2012-01-18T18:46:00.001-08:00

A Brave Snowman

Some sledding

The power went out for a little while so we pulled out the headlamps from our Vegas Marathon and had some more fun!!

Hearing-aid step 1 The Mold

2012-01-04T20:28:00.000-08:00

Today was the post op apt wit Dr Perkins. He checked her ears to make sure that the ear drum healed and was happy to see that it did! Se still has fluid in both ears but he is NOT going to attempt anther ear tube. After another hearing evaluation her ear was molded for the ear piece for her hearing aids. They did a speech test on each ear and we could see her frustration when they tested her right ear. She got flustered started raising her voice. She was very nervous about having her ear molded but after feeling so frustrated with not being able to hear during the speech part of the test she agreed to try to let them do the mold. She was so cute asking questions about how it was going to feel and at one point sighed and said "oh good, cause I was really worried about that hurting!" She did a great job having her ear molded too!

They gave her a lot of choices in the color of the ear piece. She could choose a color up to three color swirl and then any glitter type they had so many choices (multi- color,pink, silver, stars ect) She chose a clear piece with a pink swirl and multicolored glitter! She is getting so big! Her ear piece will be ready in a few weeks and then she will go have a hearing aid fitting and get a trial hearing aid to use before we order her one. Oh and they have lots of color options for those too! lol! She is happy that she can "show off her style" and we are happy that she will be able to hear better!

putting the goo in her ear to make the mold

mold drying there is a sponge in her ear canal and a string attached to help pull the mold out when it is done. It took about 5-10mins total for the mold to be made.

Happy Holidays!!

2012-01-01T14:32:00.000-08:00

My brother's new business!

2011-12-25T21:33:00.000-08:00

My brother's new business! :) He is a partner in an heating and air-conditioning business in Bremerton, WA.

They have a web site;

http://www.dcheating.biz/

Congrats Uncle Guy!! We are proud of you and wish you luck!!

home

2011-11-18T18:54:00.001-08:00

Izabell is home and resting. She has an ear ache and is exhausted but very happy to be home.

Izabell's simple ear tube surgery.......... NOT!

2011-11-17T18:47:00.000-08:00

Izabell was admitted after the surgery so we are staying at the hospital tonight. The Dr did not get to put in ear tubes. On the first incision her ear drum started to bleed heavily and they spent a lot of time stopping the bleeding. She has very abnormal vasculature and allot of hemangiomas and the Dr was worried that they may have nicked a important artery. After it stopped they sent her to get a CTA scan to make sure there was no bleeding in her brain or anywhere else.When I went into recovery she was crying and yelling but was just scared and had a bad headache. She is doing OK sore tired cranky and hungry but no more bleeding so far. As long as she has no bleeding she will be able to come home tomorrow. Ear tubes are no longer an option and she will get a hearing aid when her ear drum heals. My phone is not working (great day for the battery to fry) The surgeon today has worked with Izabell and us since she was a baby and he said only Izabell would be this tricky! lol! I am glad he was her Dr today since he knows her so well. I am exhausted now hope that we will be able to get some sleep here tonight.

Trick or Treat Pictures

2011-10-31T22:10:00.001-07:00

A Pumpkin Hunting we go...

2011-10-29T10:25:00.000-07:00

Jones Bar Mitzvah= Cousin LOVE!!

2011-10-29T10:09:00.001-07:00

lots of love!!!

More awesome Cousin LOVE!!!

Sweet little girl!!!!!!

Baby Thunder turned into Hurricane Nola on the Plane!!!

Everyone had a wonderful time at Ben's Bar Mitzvah! Ben did an AMAZING job!!!!!!

busy

2011-09-30T06:32:00.001-07:00

I have been so busy! I am sorry it has been a while! Everyone is doing great! Kindergarten is in full swing now and Izzy is happy. She has lots of new friends in her class and seems to be known by other classes too! Yesterday she was taught how to play rock paper scissors at recess by the six graders:) She loves the six grade helpers and spends her recess playing with them! When I ask her what she likes best about school she says "I like the whole thing!"

Nola is doing great too! She is busy and saying a few more words now. She can climb run and loves to dance! She loves to talk on the phone when people call!

First day of Kindergarten!!!

2011-09-13T11:03:00.000-07:00

Izabell was so excited for her first day of Kindergarten! We made a count down and every morning she took a number off! We woke up and made waffles then got ready for school! She picked out her cloths and hairstyle and was so excited to wear a necklace that her Tia Maria made for her on the first day! She piratically ran the whole way there! She was so excited and wore the cutest smile on her face so of course I took way too many pictures!!

We met with the school nurse and her teacher last spring and then also last week to get her 504 plan in order and also to help Izabell know what to expect while at school! She was confident and happy the entire morning and is looking forward to learning how to read! She plans on reading to everyone who will listen as soon as she learns how! I am looking forward to picking her up this afternoon and hearing all about her first day of kindergarten!!! We are so proud of her!!

fun at the beach

2011-08-28T15:37:00.000-07:00

Drama Camp Show Day and running

2011-08-19T15:17:00.000-07:00

We have been busy having fun this summer!! Izabell has been in a lot of different summer camps! Some of her favorites have been the YMCA Sports Camps and also Seattle Children's Theater Splash Camp. It has been fun to watch her gain skills in new sports and see her shine and enjoy her self every day!

Click on the links to see Izzy in action at Drama camp!!!

http://youtu.be/QHFHHfqixRQ

http://youtu.be/X046J4l14Rw

http://youtu.be/BBFU9s62yfM

http://www.youtube.com/watch?v=7D2Gy0ws0N4

Steven and I are training for the Vegas Rock and Roll Marathon now which will be my first full! We are on week three and so far I have decided training for a full is much harder then training for a half :) It is nice to train with my husband and we are always appreciative when friends help watch the girls so we can go on the long runs together:) Thanks Kelley and Kathrine. (ok fine ...it is just me... I need/love company/motivation on long runs!!) We have 15 more weeks of training so if you want to go for a run give us a call:)

Hiking Mount Si

2011-07-31T15:48:00.000-07:00

We had a wonderful time hiking Mount Si!! The trail is 4 miles to the summit then of course 4 miles back down. Nola road on my back and did great!! She was happy and seemed to enjoyed the view the entire time!!! Izabell hiked with us and did such a wonderful job!!! Steven carried her in the back pack for maybe 2- 2.5 miles on the way up but she did the rest on her own!!! We are so proud of her!! She is very proud of herself too!! Other hikers on the trail gave her a lot of praise and that encouraged her to keep going instead of asking for Steven to carry her! She walked the entire 4 miles down with just a few breaks too! She is AMAZING!!! Every time someone passed her they would ask how old she was and then would cheer her on and tell their hiking partners well if she can do it we can! Man could you imagine how inspired they would be if they knew Izabell's journey?! She inspires us daily and she did way better then we expected her to do on her first hike!! The weather was perfect and we had so much fun!! We feel very lucky and blessed to enjoy so many wonderful moments with our girls!! Hope you enjoy the slide show!

Keep The Beat Walk

2011-07-24T09:14:00.000-07:00

The Keep the Beat walk was a lot of fun!!! We loved seeing all our friends and meeting new ones! Thank you to everyone who came out to walk with us and to a special thinks to everyone who donated as well! Your support (in all the ways you show it) means so much to us! I did not do a very good job taking pictures yesterday; I was having too much fun socializing!

CHD Awareness Walk

2011-07-13T11:27:00.000-07:00

We will be walking in the:

CHD Awareness Walk

It's My Heart Greater Seattle Chapter

July 23, 2011 Begins at 10AM

Warren G. Magnuson Park

Seattle, Washington

We would love for you to come walk with us on Team Izabell!!!

If you would like to walk register by clicking here and then click on join our team. Registration is free this year so we hope that lots of our friends will be able to come out and cheer Izzy on as she walks with us! If your unable to walk with us and still want to offer support you can make a donation by clicking here.

Thanks for your support!!

Ferry and cousins

2011-07-13T11:13:00.000-07:00

We took the ferry to my brothers yesterday and had a wonderful time visiting for the day. This was Nola's first ferry ride and she loved it! We loved my brothers new house and had a lot of fun visiting with them.

update and pics:)

2011-07-10T10:33:00.000-07:00

Izabell's dental surgery on the 7th went well. She was amazing waiting in the preop room. We checked into the hospital at 12:15 and they did not take her back to the OR until 2:30 but she was great the entire time. She was not allowed to eat after 9pm the night before but did not complain or get upset about the lack of food. She played go fish, listened to music and watched Tangled while she waited. She had some medicine to help relax her before they took her to the OR and that made her loopy and she was cute and silly but still not as relaxed as they thought she would be so they let Steven go to the OR with her until she fell asleep. The surgery was shorter then planned and the dentist did not need to pull any of the teeth!! She did get a lot of caps, fillings, sealants and a crown and was sore for a day or two but she got to keep her teeth. She is really excited about having a silver tooth in her mouth too! Her ear tube is out as well and the ENT said that unless something comes up she does not to see him again!!! This is wonderful news!! She has a follow up with the dentist in two weeks.

Stevens parents where here visiting for the week and watched Nola while Izzy was at the hospital for the day. The girls had so much fun with Bubbie and Zayde and are already missing them!! While they where here we visited the Zoo where Izzy feed an elephant. We also went to the Imagine Children's Museum and both girls had a great time playing there! They where running around so fast!! I did not take a lot of pictures but I hope you enjoy the ones I have to share:)

PASS apt

2011-06-29T12:38:00.000-07:00

Izabell had the P.A.S.S. apt for her upcoming surgery yesterday. Steven stayed home with Nola and I took Izzy to the apt. It has been a while since it was just Izzy and I at the hospital and it was nice to have a little time together even if we where at Children's! I think she felt the same way because she chatted the entire time, played games in the waiting room and even played cards! She is getting so big!!! She was in a great mood! The apt went well they just check her general health and asked some patient history questions and explained to her what was going to happen on the day of her surgery. The nurse let her check her heart and ears after she checked Izzy's which made Izzy very happy! She told the nurse that she doesn't like the taste/smell of the mask and that it makes her sick. (she was in tears talking about it) The nurse was wonderful and told her she could have some medicine before getting the mask to help her feel better and that it would make her happy and loopy. Izzy liked this idea as long as the medicine did not taste gross! Gross means cherry flavored and so they told her that they will try to get some bubble gum medicine ready for her! She said she will try to swallow it, I think we may have a little resistance the day of the procedure but who knows. Hopefully having Izabell choose parts of the pre op plan will help her feel more in control and a little less anxious.

Steven's parents will be here Sunday and we are all excited to have them here with us and helping next week! Friday will be mark Izabell 1st year with out surgery and she is hoping to go to the movies and out to ice cream to celebrate :)

Seattle Rock & Roll 1/2 Marathon.. been there done that!

2011-06-25T15:10:00.000-07:00

Steven and I rocked 13.1 miles this morning!!

Here is a picture of us at the finish!

What sweat? That is not sweat it is liquid awesome!

Road trip!

2011-06-23T23:26:00.000-07:00

I took so many pics on our road trip to San Francisco last week but am so tired and so you only get a few today. We had a wonderful time the girls where amazing in the car!!! We where so happy to meet our niece and spend time with everyone!! We where her first babysitter!! Which is awesome:) She is a very sweet and beautiful little girl and Izzy and Nola both love her!! :) I hope to post more later but no promises we have a busy week or two ahead of us.

We are home now and tiring to get caught up before we get busy again!! Steven and I are going to run in the Seattle Rock and roll Half Marathon on Sat then we are taking the girls to a Sounders game Sunday. Izabell's summer fun camp stats Monday. We are also taking the girls to a Mariners game (or should I say a Braves game) on Monday!!! Steven is going to the Tuesday one as well but I think the girls will be ready for a day off by then! Then we have a pass clinic apt for Izabell's next surgery which has now been bumped back to the 7th. Steven's parents are flying in to help and so far the change in plans has not affect the the visit so we are ok with the change, I hope they don't changes it again thought.

Congratulations Caris!!! + super cute pics!!

2011-06-13T09:38:00.000-07:00

We went to Caris's graduation party yesterday. We are so proud of her!! This smart beautiful teen just graduated high school with honors and has two years of college s already!!! She is headed off in the fall to continue her education ans plans on going to med school!!! Way to go Caris, your a rock star!!!

now for pics of the girls......

Izzy had no trouble running around in Ashley's spikes!

The girls and I have had a cold and are now on the mend. We are happy to be getting better and looking forward to summer break!! :)

ugh!!

2011-06-09T19:41:00.000-07:00

Nola likes to CLIMB!!!

She is fast and very strong!

She climbs( and falls off) the chairs nonstop and has gotten on the table more than once!

we are starting to get creative with our chair placement!

A few days of sun = a lot of fun!!

2011-06-07T15:44:00.000-07:00

Nola loves climbing up on the chairs and getting into anything and everything she can reach!

These two are such sweet friends!!

Izzy and I had some fun big girl time while Steven and Nola cooked dinner. I really enjoy having some special time with my big little girl!

We have been spending a lot of time at the new park!

On July 1st Izzy will have gone 1 year with out surgery!!

2011-06-05T16:04:00.001-07:00

Maybe I should wait to post this..... you know what they say about counting eggs..... but it is just such a great thought!!!

Izabell will have the dental surgery on July 5th. Her vascular ENT will also come in and take the ear tube out of her ear and patch the hole in her eardrum. I am hoping that the hemangmias do not cause any trouble in the healing of her gums and eardrum. I also hope that taking the tube out is the right thing to do. Normally they fall out but since Izzy had the tube for over 2 years it is time to take it out. Her body has never really done the norm anyways right! The tube was placed in hope to give her eardrum movement and her hearing and speech started to improve that day!! Before the tube was placed she has not movement on her eardrum due to the hemangioma and so I am wondering what will happen after tube comes out and she heals. Will her eardrum have movement or will she lose some ability to hear out of her right ear again? I did not even ask the Drs since I'm not sure if they even know. Izzy's body does what it does and we just work with it so that is what we will do.

The surgery was going to be in June but since Izzy needs cardiology to reset her pacemaker,Dr Perkins and the dentist in the OR at the same time it was pushed out to July 5th. Izabell's last surgery was her pacemaker June 30st. And with the surgery being pushed back to July 5th means that Izabell will have made it one full year without surgery!!!!!!!! Now it may seems silly to some to celebrate this as a year with out surgery since four days after the year mark she will be in the OR but to us a year is a year!!! Izzy has never gone an entire year with out surgery and this is huge for her!!!!!! She is 5 years old!! I can still remember back to when she had not gone 6 mths with out surgery!! We are going to have to celebrate on July 1st!! What we should write on the cake??

Ok fine some of you might you count the needed to be sedated for a CT scan as surgery which would make this is all void but we don't so :)~

Preschool Graduation!!

2011-06-03T18:44:00.000-07:00

All dressed up and ready to go!

Showing off her fabulous smile, oh ok fine she was showing me the "diploma" but I am in love with that amazing smile!!:)

She is standing by Davyn she has a crush on him:)

Izzy and her girlfriends.

My big girl!!!

Izzy and her teacher Elise!

Today Izabell graduated from preschool!!! This is from her developmental preschool and she was so happy to be back at the school and celebrate graduation with all of her friends!! She has really missed all of her friends there and they missed her too! It was so much fun to see them again!! I have a lot of play dates to plan for her and her friends! ! She started this preschool when she turned 3! She was behind her peers in a lot of areas and today she graduated with them today after testing out of the program and is headed to general education kindergarten!!!! That is the goal of the birth to three and the preschool programs and we are very thankful for her teachers, therapists and all her friends who helped make this experience a fun success for her!! We are very proud of her!!

Good News!!

2011-05-26T12:29:00.001-07:00

Nola had an apt with the orthopedic surgeon today to discuss her hip dysplasia. At her last apt with the PA we where told that Nola was likely going to need to go to the OR and have her hips looked at and casted by the surgeon sometime this summer. The surgeon however had a different opinion on Nola's' treatment plan!! Nola's hips have never clicked or come out of the sockets which is good news and the Dr thinks that Nola's hip are just slowly developing. He thinks that as she grows her hips will improve and become more stable. The plan at this time is to let her continue to grow and not to intervene at all!!!!!!!! I LOVE THIS PLAN!!! Nola will go back in a year and if she is doing well she will go back yearly until she is 6. If her hips do not get better by the time she is four she will need surgery but right now we have time on our side. :)

While Nola was at the Dr Izzy played at her friend Stella's house! Thanks Kelley for letting Izzy escape a hospital visit:) They have a new puppy who is very sweet and my girls love him! Nola crawled in his bed with him and cuddle but I was to slow to get a pic!

Girls just want to have fun:)

2011-05-15T11:10:00.000-07:00

Happy Birthday Nola!!!

2011-05-05T09:30:00.001-07:00

Can you believe she is one!!! This year has gone by so fast!! Nola is a joyful, strong and beautiful little girl!!! Happy Birthday Nola!!!! We love you very much!!

Nola's first birthday party was on Sunday and we where blessed with wonderful weather!!! Here are some pics for you to enjoy!!

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Running errands can be exhausting

2011-04-26T16:19:00.000-07:00

Happy Heart Day Izzy!!!!

2011-04-25T13:14:00.000-07:00

Five years ago Izabell had open heart surgery. It was the most frightening, most emotional and longest day (and following year)in Steven and I's life. She was so sick and she fought so hard to get well! We are so proud of her!! We are so thankful for everyone who has helped Izzy and our family us with their support love and knowledge!! Happy Heart Day to our superstar Izabell!!!!

Ocean Shores :)

2011-04-19T09:38:00.000-07:00

We drove down to Ocean Shores Saturday after Steven got off work! We woke up to a sunny day at the beach!! Izzy and Nola had a lot of fun! The morning trip to the beach was pretty warm and Izzy even got her feet wet. Ok well she got more than her feet wet but she had a lot of fun!! After we cleaned up and dried of we ventured out again. The wind had picked up and it was cold but still a beautiful sunny day! We had some lunch and Izzy flew her new kite and then we headed back to the hotel to swim in the heated pool. We drove home the next morning and made it home in time to prepare sedar. Enjoy the pictures:)

How about some dental surgery this summer?

2011-04-14T15:10:00.000-07:00

Izabell had a few apts today! She saw her Dr in the Vascular anomalies clinic, who had her see audiology for a hearing test and after she had a dental apt. Izzy was great for the first two apts. Izzy has a tube in her right ear still. The hope was that the tube would fall out a year after it was placed but Izzy's did not. She was very patient for the hearing test and they where able to run a few more tests then in the past which was good. She still has moderate hearing loss in her right ear and her left ear is in the normal range:) Nola had a hard time being quite for the tests. It was a good thing Izzy was in a sound proof room. I could hear and watch her on a monitor in the room with the audiologist but she could not hear me (or her sister).

Izzy on the monitor (in the soundproof room)

Izabell had a very hard time with the dental apt. She was very nervous and weepy though the apt. I had xray films at home to practice with Izzy so she would let them take xrays and she was ready to try until the dentist told me that I had been doing it backwards!!! We worked hard to get her to put them in her mouth backwards!! UGH! She is so afraid that she is going to gag and throw up from the films. She did not let me or the dentist try to put the films in the right way (ugh) so they did not get the needed xrays today. They had a hard time looking at her teeth today because she was so upset and scared. Izzy's tooth enamel did not form right and so her teeth are not the healthiest. We work hard to keep them clean, we brush and floss them. She goes to the dentist every 3 mths and has had florid treatments every 3 mths and sealants but still her teeth are not doing well. Her dentist did see the the teeth that they have been watching have gotten worse and she now has at least three cavities. Her dentist has decided it is time to take Izzy to the OR to get xrays and to fill or possible pull some of her troublesome teeth. It is very important to keep Izabell's teeth and gums healthy because having a heart defect increases her risk of heart infections. Good dental hygiene is the best way to prevent heart infections from tooth or gum disease. Izabell will have dental surgery sometime this summer. Because they will need to pull teeth they will need to cauterize that area so they will need her cardiologist to come in and program her pacemaker before and after the surgery. Since she will be in surgery her ENT has decided to remove her ear tube and patch her ear drum at that time. It will take a while to coordinate all the Dr's schedules so when they call with a date I will not have a choice about the timing. I really hope that Nola and Izabell's surgeries are not scheduled too close together!!

Nola entertained herself during the apts :)

A Zoo Day

2011-04-09T17:32:00.001-07:00

M's Game

2011-04-09T17:28:00.001-07:00

2011-04-07T23:07:00.000-07:00

Izabell's Dr apt went well today! Yeah!! She is growing on her own growth curve. She is small but we all know good things come in small packages!

Hip Update :(

2011-04-06T14:41:00.000-07:00

Nola had a follow up apt with her orthopedic Dr today. Nola had fun walking around the hospital halls today and flirting with everyone. She was very good though the apt and was very happy as long as no one was tiring to change her diaper. (poor girl has a bad diaper rash!) We did not get the news we where hoping for. The hip brace did not corrected her hips and the Dr said that we do not need to have her wear it anymore. Instead Nola will need to be seen by an orthopedic surgeon and discuss our options and plan for the next steps for her hips.

What is probable next step? Where where given some scenarios today....

They will most likely need to take her into surgery, inject dye into her hips and get better images so they can see why her hip sockets are not forming like they should. Is there soft tissue in the socket or is the socket underdeveloped? Depending on the images they will decide what needs to be done. They may try to place her hips into the socket and cast her at that time. She would be in a spica cast for 3 months if that happens. She may need her hip sockets reconstructed and casted after for 3 months. If that is the case they may wait about a year to do the surgery (not sure why). Right now the plan is to see the orthopedic surgeon and get his opinion and make plans to help Nola. I am going to try not to get too stressed while we wait for the apt. I was hoping to avoid casting. Nola has very sensitive skin and has reacted to elastic waistbands, diaper cream and some glues and I worry that this may make this even more challenging. Nola's apt is at the end of May so until then I am going to enjoy a soft brace/cast free baby.

Nola is a bit wobbly walking around with out the brace on and it sometimes looks like her hips give way (picture your knee giving way while walking) and she falls. She is very scrappy and gets back up and keeps going and does not seem to be in pain so that is good!

Tomorrow we will be back at Children's because Izabell has a follow up apt with her endocrinologist. Friday we are going to the Mainers opening game!!

2011-03-31T15:16:00.000-07:00

Nola is walking more and more each day! She is getting so big so fast!!! She waves hi and bye, plays peekaboo, loves to make noise,tries to climb everything and is pretty fast. She is alot of fun a little trouble! We are all in love with this sweetheart!

Izabell is doing great! She is getting very good at swimming and is very excited to have a bikini bathing suit! She wanted to feel the water on her belly! She is recognizing and writing more and more letters. She is our goofy drama queen and we love her so much!!

The CT Scan reports are great!! Izzy's CTA reports are in. Her anatomy is not "normal" of course but it is stable and we are very happy with this information:) WE will cont to find out more info as we meet with all her Drs but we are so happy with the news so far!! Go Izzy go!! Wahoo! Nola and Izzy will be busy this coming month with Dr apts but hopefully I will have all goods to post about.

CT Scan

2011-03-24T16:14:00.000-07:00

Izzy Shalula and her daddy listening to a spacial playlist I made her for today on the Ipod

Izabell had a CTA this morning at Children's. The original plan was to have a sedated CTA with contrast of her head and neck. Then cardiology added the aortic arch to the order. When we where brought back to radiology today the nurse thought Izabell should try to have the CT scan while awake and was not 100% sure of the orders and said she was not sure if Izzy would not need an IV. I told her that we did need an IV for contrast and that she is supposed to be sedated for the test. She told us that Izzy might surprise us and do really well awake. I know Izzy is good at surprises and great at the hospital but I did not think she could lay still throughout the 15 min test with out moving at all while they push contrast in her and have the CT taking pictures and the bed moving!! Izzy is 5 and fidgety! The nurse said they wanted to try. I was not sure, and did not feel good about this. The nurse took us to the CT Scan and let Izzy put Shalula (her bear) on the table and the sent Shalula though the CT scan. Then they had Izzy lay on the bed and let her see what it felt like when the bed moved though it. I thought this was a good way to show Izzy the room but I know that contrast feels warm and a bit odd running though your body. Izzy was unsure but said she would try to do it awake and would try to be very still. I still had many concerns about this though I like the idea of not needing to sedate Izabell. So instead of going straight to the CTA with the anesthesiologist the nurse had Izzy go to get an IV placed with another nurse who is good with little viens.

I felt a little pushed into this choice. Her Drs ordered a sedated CT scan for a reason right? I was happy to not need to sedate Izzy but this test is important. Izzy's neurologist is trying very hard to limit the amount of radiation she is exposed to. I was getting very worried! Worried that Izzy would move and the images would be blurry and no good. Worried that they would have to try multiple times to get a good IV placed (this was a bigger IV to inject contrast) and then would have to sedate her anyways. I also was wondering what would happen if the images where messed up because she moved. Would they have to do them over again and exposed her to more radiation? Would they sedate her in the middle and try again if she did not do well or just stop and rescheduled for another day? Would all this effort expose her to more radiation or/and more trauma and anxiety? Would we get the best images possible? I had a bad feeling about this!

The new nurse came in and recognized Izzy from past procedures and started looking for good vein. She was surprised that they where not sedating Izzy. When she could not find a good vein in the spot the Drs wanted the IV placed she called anesthesiology to talk to them about the IV and her poor veins. She then came back and asked if Izzy had eaten or drank anything.Aha! I knew where this was heading...... She wanted to know why she was not being sedated. I told her that Izzy was MPO (no food or drink) because she was supposed to be sedated and the nurse was relieved because she shared my concerns about Izzy holding still at this age and at her size. This nurse remembered her and knew her a little better than the first nurse. Knew that she has a complex history and multiple issues. She said we could try to have her do it while awake if we want her to but if the images are not good then Izzy would probably have to come back another day and have to be sedated and have another scan. (not what we want!!) She told us to think about everything and she would come back and help with our decision. She was so supportive and after asking her a few (or allot) questions we decided to go with the original plan and had them call anesthesiology to come talk with us.

After this was decided I noticed the original nurse outside in the hall talking with our new nurse. I don't think they where fighting but rather discussing the situation and the options. I then noticed there was a group of Dr.s and nurses discussing this. I do think we made the right choice.

While Izzy was having the CT Scan I became worried that they might have gotten the orders confused since two Dr.s had orders on the same CT Scan. Instead of concentrating on the scan and making sure they had all the orders in place I was focused on rather to have Izzy be sedated or awake. As I was beginning to tell Steven about my concern the radiologist came to talk with us.They told us that it took a while this morning to start the scan because the orders where confusing and they had to call the Dr to make sure they do the right imaging. I was so relived to have them walk in and share this with us!! What prefect timing!! They had the right orders now and all should be good. I hope and pray that the images are prefect and bring good news!!

Izzy chose to have strawberry flavored gas and they let Steven and I both go in the room with her while they sedated her. She fought the gas, would not sit still and ended up falling asleep in my arms sitting up on the table. She had the IV placed while under and was done and waking up 20 minutes later.I do think we made the right choice and was glad to have a nurse advocating for our daughters best interests.

Izzy did great, she was nauseous after waking up but in a good mood. She had some cracker and juice in recovery and kept it down so we where able to go. When they discharged her they said she could eat and drink normally. We where all super hungry since we did not eat anything all morning so we went to the cafeteria for lunch. After getting our food and picking a place to sit Izzy began throwing up! Ugh! Poor girl!!! At least she had very little in her tummy! She passed on lunch and opted for a visit from nurse Amy instead. We are now home and resting. Izzy is feeling good now and eating a bit and enjoying some quit time. Now we wait for the results and her follow up apt on Monday.

waking up

Outta there!!

Kelley watch Nola for us all morning and we really really appreciate having the help!!! It was so nice to be able to be there 100% for Izabell knowing that Nola was in wonderful hands! Thank you sooo much Kelley!!!

Fun in the Sun!!!

2011-03-24T06:41:00.000-07:00

She walks!!!

2011-03-23T08:49:00.000-07:00

Brace on chasing the puff container

Brace off still chasing the puffs:)

Weeeee!!!!

2011-03-22T16:20:00.000-07:00

upcoming CTA & first steps!!!

2011-03-21T09:34:00.001-07:00

Izabell started her new preschool last week and was very happy with the program! Yeah:) She even knew a few of the children from the gym playroom!!! The teachers told me that she is a good listener and has been doing very well! I am so glad she is happy and very proud of her!!

Izabell has the CTA this Thursday of her head, neck and heart. Her Dr ordered the test last March. I am amazed by how fast a year has gone by!!! I am hoping for good news. Izabell is not excited about having to be sedated for the test. She keeps asking if she has the mask today. They let her choose a flavor for the gas then rub it in the mask so the gas is flavored. They use the gas to sedate them before placing an IV to avoid extra trauma. I think it is a smart plan. Reduces pain especially with kids who have a tricky vascular anatomy like Izzy. Izabell has had surgery so much she is not helped by the sent anymore and gets upset when she sees the mask. She is calm until she sees the mask usually. The last time she was sedated she fought the mask, spitting in it and etc. She knows that the apt is coming up and that she will need the mask. I have been talking with her and asking her how I can help make the day better for her. Her requests are so simple and sweet. She wants me to hold her hand the entire time and bring snacks for her to eat when she wakes up. Done. My friend Kelley is going to watch Nola on Thursday which will be a huge help! That will allow us to give Izzy all the attention she needs. Thank you so much Kelley!!

Though the years, have learned some steps that seem to help Izabell when she has tests and surgeries. We always talk with Izzy before the procedures. We are honest with her and try to give her age appropriate details of what will happen. We try to help her understand what is going to happen, who she will see and why the procedure is being done. . We ask her what she thinks we can do to help make the day better and she gives us ideas. This gives her some control and control is very important to Izzy. On the car rides to nerve wrecking atps we play her favorite music or audio books to keep her mind busy. I noticed that she would get very nervous on the drive to the hospital and get very worked up before we arrived. The CD's are a huge help and she gets wrapped up in the songs/stories and has less time to build up anxiety. I also bring a DVD player headphones and movies for her to watch in the waiting areas. This helps keep her mind off the apt and also lets her choose to block out the conversations (details of procedures, warnings of side effects and etc) we have with the Drs before the tests/surgeries. I also have the Drs give Izzy anti nausea meds in her IV before she wakes up because she has a history of getting ill while waking up and that was no fun!

Izabell's follow up apt is on Monday. I am not the most patient person and waiting the weekend will be nerve wrecking even though I am hoping for all good news. I have registered for a 10k run on Saturday and hopefully that will help me deal with some of the stress;) My friend Mimi is going to come up and keep the girls company while I run!! Thanks Mimi!!!

This is a long post so I will end with some really exciting news....

NOLA TOOK HER FIRST STEPS YESTERDAY!!!!!!!

She was in her hip brace standing up playing with a ball at a Purim festival. When she dropped the ball it rolled away and she started walking after it!!! She took about 3-4 steps and then fell and crawled to the ball!!! I was so excited and of course did not have my camera!! Hopefully I have some pics and videos for you all soon:)

until then I hope you enjoy some pics of the girls taken this last week...

Nola does not like napping at home!

Izzy the rock climber!

The girls dancing together :)

Steven and I are also signed up for a 1/2 marathon this summer and a full in Dec!!! Any friends who want to help by watching the girls while we train (....run our butts off) will be greatly appreciated!!

20 Questions at 5!

2011-03-15T16:59:00.000-07:00

1. How old are you? 5

2. What is your favorite color? Blue, pink & black
3. Who is your Best Friend? Stella Sydney Dayvn
4. What is your favorite meal? Pizza
5. What is your favorite snack? Cheese crackers
6. What is your favorite thing to drink? Lemon-aid

7. What is your favorite toy? dress up
8. What is your favorite thing to do outside?walk with my umbrella
9. What is your bedtime? 8:00
10. What is your favorite TV show? iCarly/ Hannah Montana
11. What was your favorite vacation this year? Whistler I skied there
12. What is your favorite Movie! :) Tangled
13. What is your favorite thing to do at school? play
14. What is your favorite activity? swimming
15. What is your favorite restaurant? California pizza kitchen & The Pancake house
16. What is your favorite book? Where the Sidewalk Ends, The Me Princess Book
17. What is your favorite game to play? Trouble, puzzles hide and seek
18. How much do you weigh? 34lbs
19. How tall are you? 40"
20. What size shoe do you wear? 9

Izabell received this book for her birthday! I snapped this picture as Steven read her the first chapter! (Yes I was sitting there with my finger on the button waiting for the right moment) This is a personalized book and Izabell was very excited to hear that she is a character in the book! Not only is she a character but her friend Stella is mentioned a few times as well!

The Big Picture

2011-03-10T11:45:00.000-08:00

Izabell has tested out of the developmental preschool program!!! Monday we where told she no longer qualified for the program and that her last day in the school would be Friday! We had the option of paying to keep her there as a peer model. We have decided to enroll her in a preK program instead to get her used to a larger class size since her kindergarten class will have 23 children in it. The short notice had me feeling stressed and tiring to ease the transition for Izzy has kinda made me lose sight of the big picture.

The BIG picture is pretty cool!!

Actually it is AWESOME!!!!!

Izabell has needed therapy since her heart surgery. She was 6 weeks old!!

She started with physical therapy, feeding therapy and speech therapy when she came home from the hospital and at the time her therapist did home visits. She had a ng-tube until she learned to suck from a bottle and had thicken feeds. At 2/12 she passed a swallow study and feeding therapy was no longer needed. She had speech therapy and sign classes until she had ear tubes placed and her hearing increased. She had physical therapy from 13weeks and then when she turned three she started the preschool program and received physical therapy though the school. She also received social skill though the preschool. At the time Izabell was behind in gross motor skills and also social skills with her peers. Izabell has been tested and has slowly increased but was still behind in gross motor until this year!!! She was just tested and for the first time she does not need any therapy!!! We are really proud of her and are so excited for her!! She has worked and played very hard and overcome so much!! She has made so many gains while still having many medical interventions!!!

She has caught up to her peers in all areas!! This is big, and wonderful news!!!

She is a Superstar!!!

She is going to a general education preschool starting Monday and then in the fall will be in full day general education kindergarten!!!!

busy birthday in pictures

2011-03-07T22:33:00.000-08:00

Birthday Movie!!

2011-03-06T22:08:00.001-08:00

Izabell had a fun birthday party movie date with her friends today!! We invited some friends to watch the movie Tangled with her and had soda and popcorn the opened gifts and sent everyone home with a cupcake to go since movie theaters don't allow outside food. The theater staff was wonderful and very helpful and Izzy had a wonderful time and we think and hope all her friends did as well. She loves the movie and really enjoyed sharing the experienced with her friends!! I left without my camera!! I do not think I have ever done that!!!So pics are sparse and from friends camera phones:) As we where heading home Izzy told us that this was the best birthday party ever! I am so glad she had a good time!

Tomorrow is her actual birthday! She is really excited! Bubbie and Zayde took her to build a bear to replace Shalula's music because the icarly some had stopped working. Izabell chose a birthday song to replace it. She is excited to wake up and have Shalula sing Happy Birthday to her in the morning!! She is positive that she is going to be bigger tomorrow because she will be 5! I told her we would measure her and mark her growth chart to see:) Tomorrow is going to be a busy day!! We have a meeting with Izabell's school in the morning and a cardiology clinic then drama class after that. We have a special ice cream cake and some gifts ready for after dinner:)

Fun stuff ahead!!!!

2011-03-03T15:40:00.000-08:00

We had a wonderful time in Whistler last week!!! Izabell went to ski school and did great!!! She went three days and can now stop and turn though cones!! She did really well and had alot of fun!! She loved going in the hot tub afterwards! (it was not a very hot soak) We all had a wonderful time visiting with family, skiing,eating, snowboarding,eating, snowshoeing walking eating etc! We are home now and enjoying having Bubbie and Zayde here visiting still! We are going to be busy the next few weeks!

Izabell will be 5 on Monday!! She had her 5 year check up today and is doing well! She is still small but she did grow some. She has slipped on her growth chart though and is in the 3% for height and the 15% for weight. She has an endocrine apt coming up in April so we will see what her that thinks about it then. She is doing great otherwise!!

Saturday we are taking Izzy to Teatro ZinZanni Zirkus Fantazmo Show while a friend watches Nola! We are looking forward to the show and I know Izabel will have a fabulous time! Sunday Izabell is having a little birthday get together at the movies with a few friends! She is very excited!!! Monday my "rock star fairy princess ballerina musketeer " will be 5!!!

Izabell is going to test out of Special Education classes and will be going to a general education program within the next few weeks!! This is wonderful news!! I am looking into a new preschool and am working on getting her registered this week! We also have her IEP Monday at her next fall's elementary school! I need to start working on her 504 plan now! Izabell also has a cardiology apt on Monday and will have an echo, pacemaker check, EKG and xrays followed by the cardiologist apt. Hopefully we will only get good news at the apt. maybe apts on birthdays bring good luck;) We plan to go out to dinner and enjoy some yummy ice cream cake with Bubbie and Zayde that night:)

2011-03-01T22:53:00.000-08:00

Izzy's homemade valentines!!

2011-02-11T11:13:00.000-08:00

She did such a good job and had so much fun making these valentines for her class mates!! She drew pictures of all her friends and decorated the cards!!She stuffed the envelopes with a sticker and the cards and then signed her name!! I love them and am so proud of her!! My little girl is getting so big!!!

Yesterday we got a call from the elementary school and where told that Izabell got into the kindergarten class we registered for:) Yeah!!!!

Izzy's got short hair!!

2011-02-07T18:22:00.000-08:00

Pike's Place Market with Mimi & Family

2011-02-06T09:53:00.000-08:00

I am such a lucky mom!!!

2011-02-05T14:56:00.000-08:00

staying busy and bracing 24/7

2011-02-03T09:31:00.000-08:00

Izabell is registered for kindergarten!! I dropped the papers off on Monday and Izzy is very excited!! She is doing very well and has enjoyed the break from all her Dr apts! Izabell is apt free this month also!!! Nola is not so lucky! CRAZY stuff!! March though is a month full of BIG apts so we are going to enjoy the free time! Izzy has cardiology on March 7th and a CTA on the 24th with neurosurgeon follow up on the 28th. She will also have her 5year old check up sometime in March as well. We have has some fun days swimming lessons, drama classes, zoo trips parks and play dates and the girls have been very happy!!

Trip to the Zoo last Friday with friends!

Nola had roseola a week ago with high fevers. So she had to go into the Dr and was bagged for a urine sample because at the time she had no symptoms or rashes. The adhesive from the collection bag did a number on her sensitive skin too! Poor girl had blisters and was in a lot of pain. The rash and the allergic reaction have both cleared up and Nola is back to her scrappy self:)

Yesterday Nola had a orthopedic apt. We almost missed this apt too! I have never done that!!!! Steven normally takes Mondays off but this week he took Tuesday off which was wonderful but in my morning fog I get a little messed up! We woke early and had a nice calm morning. When I made my coffee I wondered why Steven took the garbage out on a Tuesday and then while taking Nola's brace off to change her diaper it hit me!! Today is Wednesday and it was now 930! Nolas apt was at 940!!! I called the clinic because I did not know what to do we have never been close to missing an apt!! They told me we had a 20 min grace period and to hurry on in!! So the race was on. I got Nola dressed, Izzy was a rock star and dressed herself and we got in the car! While driving I got a glimpse of my reflection and realized that Izzy did my makeup the night before and I had forgotten to wash my face!! I was BLUE!!! I used the baby wipes to get most of it off but did have a blue hint all day! lol!

At the hospital I signed Izzy into the sibling playroom so she would not have to sit though the apt! This was the 1st time we have done this since usually the apts are Izzy's! She loved it!! She painted, colored made a hat and played the Wii!! It was wonderful!! The hat in the pic is the one she made yesterday!

When I was checking her out of the play room a little boy came up to her and asked her why her face was so dirty. I waited to see how she would handle this before I said anything. Izzy got very quite and looked very sad and just stared at the boy then at me. I then bent down next to Izzy and told him that her face is not dirty and that she has a birthmark. While I was explaining this Izzy jumped in to the conversation and helped. She told him that she was born this way and that it doesn't hurt. I was proud of her for chiming in. The little boy did not seem very convinced but he did smile and tell her goodbye on the way out. When we got in the car she told me that it makes her sad when people ask if she is dirty. I told her that we just have to teach people about hemangiomas and PHACE syndrome. I told her that people learn about things by asking questions and the best thing we can do is answer them and try not to get upset.

Nola had xrays and then her apt. Her hips are still too steep and she now has to be in the brace 24/7. She goes back for more xrays in 2 mths and if her hips do not improve by then we will discuss a closed reduction and spica cast! Ugh! So Nola is in the brace full time but do not think that is slowing her down any!! Yesterday she stood all by herself in the brace!! It is hard to get pictures because when I pull out the camera she tries to get it and falls and crawls to me super fast!!!! lol! She is one scrappy kid!! I did manage to a few pics today while she was not looking!

2011-01-27T12:41:00.000-08:00

go ahead mom I dare you......

Izabell @ swim class

2011-01-27T12:29:00.000-08:00

Kindergarten tour and random thoughts!

2011-01-15T13:18:00.000-08:00

This month we have no Dr apts!!! This may be a first for us!! What a wonderful thing!!!!! Both girls are doing great and having fun!!

Kindergarten registration is this month!!! It is hard to imagine that Izzy is already preparing for kindergarten!! I have a busy month ahead of me getting everything in order!!! I took Izzy to the kindergarten tour at the school last Thursday. The school is smaller then the one she is at now but it seems like a good school. She met the full day teacher, the principle and the school nurse. She was very happy with the tour and was very excited to see her friend Stella's big brother in his class. When we where on our way to meet the nurse Izzy got a little nervous. When she saw the nurse (dressed in scrubs of course) Izzy asked "So do you guys do a lot of surgeries here?" The principle and the nurse and a few others in ear shot all started to chuckle. The principle told her that they do not do any surgeries at school and Izzy sighed "that's good news". Next week her preschool is offering a meeting with child care to help parents prepare for the transition and get IEPs setup. Kinderfest is coming up and then registration follows. I also will have some paperwork to fill out and have Izzy's Drs fill out as well.

Izzy is closing in on 5!!! That seemed like such a far of goal for us not so long ago! Now she is almost there!!! When she was healing from her open heart surgery and Steven's parents where looking at plane tickets to head back home I told them they could not leave until Izzy was 5. At the end of every visit since then I continue remind them that Izzy is not yet 5. They will be here for Izabell's birthday this year and everyone is excited. Izzy has a cardiology apt, ECHO, EKG, xrays pacer check on her actual birthday and having extra hands to keep Nola entertained though the apt will be such a big help. They have been and still are so helpful and such a huge source of support. I realize that when they try to head home from the next visit I will not be able to whimper "but she is not 5 yet" as they pack up their belongings. She will be 5 in less then 2 mths!! She keeps talking about her birthday and with kindergarten looming it has me thinking about the last few years!

Ina and David (I know you are reading this;) Thank you so much for helping us and supporting us though so many challenging and terrifying situations with Izabell!! Your support has helped me make it though my introduction to motherhood with out going completely insane!! Ok... stop laughing I did say completely. .

Nola is not even close to 5!

And Izzy has a while before she is 18!

private posting now

2011-01-04T01:31:00.001-08:00

i have moved the blog from public to private please email me if you want to be added

Waiting Room Art By Izzy

2010-12-26T12:13:00.001-08:00

Izzy loves drawing on the white boards at Children's Hospital when we are in the rooms waiting for her Drs. Here are a few pics :)

"Snow princess"

"Mermaid Rapunzel "

I am new!

2010-12-24T11:27:00.000-08:00

Having Izzy home all week without school swimming drama class or the gym has been fun. We have had so much more time to talk! Ok...she talks non stop all the time but she is four and talks about her day, school swimming gym etc. This week she is talking about random things and it is fun to hear her view on things:

Izzy: "Mom, I am new! Cause Daddy, you, Mimi, grandma, papa and Ashley,Max and Ben are old. Right?" I had to stop laughing before I could give her some more fitting words lol:) I told her that Ashely Max and Ben are not old they are teenagers.

Izzy: "I am NEVER going to be a teenager!"

Me: "Why?"

Izzy:"Because I will still be a princess when I am not new not a teenager!"

I love this kid!

Nola has been in the brace for 2 nights now and has done well. I am up a lot at night with her but she is still doing better then I thought she would do. She has also figured out how to roll over in it and can still crawl in it! She is one scrappy girl! lol! It only took her 2 night and she is mobile in it! She is wearing it 12hrs a day so She is still free during the day pulling up, cruising the sofa and all smiles!

Hip Brace!

2010-12-22T23:49:00.000-08:00

Nola's apt today showed that her hips have not improved and so it was time to make a decision. We could continue to follow her and hope they improve on her own though if they do not improve then her options become more narrow. (narrow means closed reduction and or open reduction surgery) Or we but her in a brace and hope that it works to improve her hip joints. The medical team seems to have mixed opinions on bracing at her age. Some Drs believe it will not help at this age. The bones are already calcified. But then other Drs think there is still time and it will help. Our Dr and a few others wanted her to be brace today. Izzy was treated by the pavlick harness starting at 3 weeks of age which is the optimal timing. She did well and did not need farther treatment for her hips. They have been watching Nola since that time but decided to watch and wait because her hips have been mild. She has not had improvement though out the last 6 mths so I needed to make a choice today.. I agreed to try the brace. If this works then she will get to avoid farther treatment and it is worth a try. The plan as of now is to have her wear it 12 hours a day for the next three months. She can wear it at night so I am hoping that she will tolerate sleeping it..

The Seattle Abduction Brace

Back view

Front view and Nola's opinion in one picture!

I can get smiles if I hold her but set her down and she gets MAD!

Now both my sweet beautiful girls have very hard braces. Izabell left the Drs apt with a huge smile. She loves that Nola is in a brace too. "I don't like my brace mom and wish mine was different, you know like my old one or one that is not this one. I like that my sister has a brace too. We both wear a brace mom, not just me! I hope she likes it. I would like hers I think" It was nice to see her so proud. I can not imagine how hard it is to wear that back brace. Her friends get hurt when they hug her, we get hurt when we hug her and worst of all she gets hurt if someone hugs her wrong! She also sees all the looks, and hears all the comments from strangers. Watching her take joy in the fact that someone else she knows and loves is in a brace really takes the burn out of the fact the that that someone else is my other child!

family fun pics

2010-12-21T10:50:00.000-08:00

We had a fun day yesterday. Izzy missed a field trip at school last week due to a fever so we took her ourselves. We added some extra train rides of course:)

sister mom

2010-12-16T21:52:00.001-08:00

Nola pulls up and stands anywhere she can. She also falls a lot and has a few bumps and bruises but is not bothered by the falls. Izzy however is very bothered by her sister falling! Now every time Nola pulls herself up on anything Izzy runs to her and walks her to another spot and gently sets her back into the crawl position. Yesterday Nola loved this! She loved having Izzy move her around and they where both all smiles. Today Nola has figured out that she is being moved away from whatever she was after and gets upset when Izzy comes to move her. I keep telling Izzy that Nola needs to stand holding things, such as the sofa, little chairs coffee table so she can learn how to walk. Izzy has decided that the behavior is "unacceptable because she will fall" I told Izzy that she has to let Nola learn and that it is ok to let her fall. Izzy was appalled. Mom! You are supposed to take care of her! I will take care of her I'm a good sister mom. See she is is up again and I am going to save her." She runs to grab Nola who is happily standing holding onto the ottoman while repeating "NoNos this is unacceptable behavior" Nola replied with a high pitched screech. Luckily Nola crawls right back to wherever she was removed from and stands up and smiles:) Izzy is enjoying being a big sister these days!

Nola Kate the escape artist!

2010-12-14T16:18:00.000-08:00

Nola is getting into everything so I though I would keep her in the living room.

I blocked it off t with Izzy's little chairs and the ottoman

Nola sees the road block and takes it as a challenge!

OMG! She pulls herself to a stand on her own!! yes this would be a first!

and tries to squeeze though the crack

but doesn't fit so ...

she knocks the chair down

ok it fell over but don't think in any way that stalls her efforts!

She rolls over

and is off in a hurry to get the.....

shoes of course, she is Izzy's sister!

Silly girls having fun!

2010-12-11T11:18:00.000-08:00

long over due... its my pattern these days!

2010-12-11T10:06:00.000-08:00

I am not the best blogger now a days. My days are so full , full of chasing Izzy and Nola!

Nola is now crawling! She has been crawling on all fours, fast, since we got home from Alabama. If anything is left on the floor Nola WILL GET IT and she WILL

EAT IT. Izzy has found out the hard way. Nola also climbs a bit and goes up on her knees to pull things off the sofa and coffee table. She has also started eating little tastes of food. I was impressed when we went out to Pho and both Izzy and Nola ate the noodles!

Izzy got chap stick and applys it until we take it away! Really, I'm not exaggerating ! She opened the gift took one out and started rubbing it on her lips, ten minuets later she was still rubbing it on her lips! She smells good enough to eat these days!! Nola prefers Izzy's toys over her lol they must taste like chap stick!

Nola has said her first word!!! She said Hi to my friend Kelley at the gym two weeks ago!!! She says Mama too:) It is nice to hear her babble and talk some of the time instead of her high pitched screech (really sounds like a whistle) She still squeals and screeches but adds some cute babbling in now with a hi or Mama:) I am smitten of course!! Izzy and I are working on Bell and Dada now.

Hanukkah just passed. We had a wonderful holiday though I had to get a bit creative when I pulled our candles out of the attic and found out that they had melted into a block! lol! I used birthday candles which I melted into the Menorah. Izzy and Nola where spoiled by their Bubbie & Zayde (ok, ok, mom and dad did some spoiling too) Every time Izzy opened a gift she started repeating "Oh my! Thank you Bubbie and Zayde!! I know that you can't hear me in Alabama but I have to say thank you thank you thank you anyways!!" She is too cute! We hope everyone had and has a wonderful holiday season!!

Izzy got some makeup for Hanukkah and was very happy to do my makeup for me! I looked so pretty! lol! It took a while to wash this all off!

Izzy is in story drama classes and has had a lot of fun with them. When we signed her up for the classes we also bought some tickets to the upcoming plays. Last weekend we all saw Lyle the Crocodile. It was a great show and the girls loved it!! When we told Izzy we where going to a play she asked if she was gong to be in it! lol! She was a bit disappointed when we told her she was going to be in the audience!

This week Izzy and Nola have been sick. Izzy is just getting over her cold and Nola is still working on fighting hers off. I am missing out on sleep and tring to be patient! Nola is very congested right now!

2010-12-06T22:05:00.000-08:00

I have such gaps in time on my blog now that I have two wonderful girls! lol! We had a wonderful thanksgiving in Alabama! Izzy loved seeing her Aunts Uncles cousins and Bubbie and Zayde! Nola loved all the attention as well.

Izabell has had a few Dr apts since we have ben home. She saw her eye Drs assistant who is happy with how her eyes are doing. There has not been any changes in her depth perception but her eyes are working together a bit more and that is wonderful news. She goes back in four mths and will be dilated again then. Izzy is not too excited about that. She also had a dentist apt. Izzy has never let the dentist do much but this time was different!!! The dentist cleaned a (one) tooth with the machine! She also cleaned a cavity and put triage on it to protect the tooth. This was a huge success and major step for Izzy! We are so proud of her!!

Izzy continues in swim class and is doing great!! Nola started swim class too (parent infant)! She loves the water and is very happy and clam in the class:) She also takes a long nap after givng Izzy and I some time together. I have them both in a class at the same time which I am finding VERY hard and will have to find a better way to do Nola's lessons until she can walk on her own on cause showering everyone and dressing them is very hard at the same time on my own! lol!

This is Snow much fun!

2010-11-22T12:18:00.001-08:00

2010-11-22T00:08:00.000-08:00

Waiting for the bus on a cold sunny morning!

Izzy and her friend Stella chasing each other around the house

then resting and watching a movie after they wore each other out!!

Nola's first rice cracker!

We are busy enjoying life with very few apt this month! Next month Izzy and Nola have some more Dr apts. We have gotten to a place where her Dr apts are spread out. She still sees quite a few Drs but instead of monthly or every three months she is starting to go every 6 mths and once a year! It is nice to have more time to enjoy doing other things.

Izzy is really enjoying this time! She swims three times a week, Saturdays I take Nola to the parent tot class while Izzy is in her swim m lesson.It is fun to have them both in the water. Izzy is doing great with her swim lessons and is making progress. She loves to swim and will jump in and just start swimming out to the middle of the pool. We need to work on having her turn towards the wall at some point! She is happy and feels so good in the water! It is fun to watch her swim! Nola had her first class this Sat and did great! She was smiling the entire time! She looked really cute in the little bathing suit and did not mind having her face underwater! She loves to kick her legs and splash in the pool!

Izzy is also in a story drama class and really enjoys going to the class. They read a book then act it out with he teacher.Izzy loves book and is a drama queen so it is a great fit for her! She memorizes allot of the books we to her and will "read" with us! My favorite books to read to her at this time are Little Pig Figwort, Pout Pout Fish (she acts out the pout part and is too cute!) and Where the Sidewalk Ends. She is a book worm and loves to be read too! She loves all books!! She also likes tell Nola about her book, Nola want to eat them which Izzy finds frustrating!

We also are making it to the gym again! I'm really happy to be able to start exercising again! I am almost 6 weeks post-opt from the umbilical hernia repair. I hope to stay in good health now and get back in shape! Izzy love the playrooms at the gym and the staff there. They keep telling me Nola is the happiest baby :) She is pretty happy!

Nola is starting to crawl! She scoots more but just this week has started crawling on her knees. She is faster scooting so depending on the goal or need to be faster then me she chooses her mode! She likes to crawl over to the heating vent and pull the cover off! I put Izzy's little chair over it but Nola still somehow got the cover off! We need to invest in better vent covers! Izzy loves playing with Nola and she wishes she could just pick her up and carry her around. Nola probably wishes Izzy could do that too! Nola LOVES her big sister!! If Izzy plays in her room Nola will head that way! She is a bit slower on the wood floors but that won't last long! Baby proofing is going to have to expand out of the living room!

Steven and I took the girls to Seattle Children's Theater for Morgans Journey. When we told Izzy where we where going she asked if she was going to be in the play, she was disappointed when we told her that she was going to be in the audience!! Nola loved the play!! She was awake alert and staring at the actor the whole time! It was a short play so that helped. Izzy said it was OK but she was/is too busy looking forward to Lyle the Alligator (the next play coming up in Dec) to admit to liking the clown one. She loves Alligators, and princesses of course!

Izzy went to a friends birthday party this weekend! It was her first party without mom! It was fun for us both! I ran to Toys r Us and got some holiday shopping done. She was treated well ( like a princess) at the party and has been telling me all about it. She got to help decorate the cake. A few moths ago Izzy told me she wants to "be a doctor a princess and a wedding cake decorator" when she grows up. She got to practice the princess and cake decorating part at this party:) She felt like such a big girl!! She is becoming such a big girl!!! She is closing in on 5!! The little ticker at the bottom of this blog brought this to my attention!!! She tells me stories about her days at school and from outings with others. She even told me all about the tree that fell on a house in our neighborhood that Steven drove past as a crane was removing it!

a fun update

2010-11-09T15:17:00.000-08:00

Trick or Treating

We had a wonderful Halloween! Izabell was a princess and Nola was a frog:) I'm sure you'll remember Izzy's frog costume! Izzy had a fun Halloween party at preschool. I also took them the girls to Steven's work for the holiday party there though it was way too busy for us! We took the girls trick or treating with Stella's family! Izzy and Stella where really cute and had a lot of fun!

Nola is growing so fast!! She is already 6mths old!! She had her well check on Monday and is doing great! She is still long and thin. She is in the 75% for height and 50% for weight! She is already half way to Izzy's current weight!!!

Izabell has had a couple apts lately. She had an endocrine and has slipped a little on the growth chart. She is a bit smaller then they would expect and they ordered labs. All her labs came back within normal levels which is great news! Her endocrine Dr had moved her out to annual apts but now wants to see Izzy back in 6 mths to follow her growth.

Today Izzy had an apt with her orthopedic surgeon who follows her scoliosis. Today's xrays where the same as her last one so that is very good news! Her Dr said that at this age and for the next 4-5 year most of a child's growth is in their legs and arms so her risk of her curve changing much in this time will be low. She still needs to be followed every 6 mths and will be in her brace. I hope that she follows this trend though she does like to do things her own way! Around age 10 children start to grow more in the trunk again and then her risk of her curve progressing gets much higher. Izabell's back looks better with this brace though before this brace both curves where around 45 and they have been around 33 and 38 in the new brace. It was nice to hear that her back is stable at this time and hopefully she has a few years where her risk of it getting worse is low! Feels like a little win fir us:) Go Izzy!

Izzy made pumpkin cakes with cinnamon cream cheese icing

Most of her Dr visits are growing father apart again and we are having more time to enjoy fun activities. Izzy has alot of fun in her swim classes drama classes, loves preschool cooking and playing with her friends! I took Izzy to Disney on Ice on Sat with our friends Kelly and Stella and on Sat Izzy went to the Seahawks game with Steven. She loves going

to games though i think she goes for the junk food and has no clue and care who wins! Izzy needed some special time with each of us. lol :)

She loves her sister and enjoys playing with her. She enjoyed feeding Nola some baby food and giving her a bottle this week:) Nola loves watching Izzy run around and be silly. Nola rolls and scoots anywhere she desires and is very close to crawling. It will not be long before Nola is following Izzy everywhere! It is really fun to watch these two play!

Preschool Picture

2010-10-28T16:24:00.000-07:00

Pumpkins

2010-10-27T23:54:00.000-07:00

More pictures!

2010-10-27T13:14:00.000-07:00

Ok so I posted a few posts today but I have lots of fun pics of the girls to share:) ( since I have not posted for a while) My girls are keeping me busy!!! They are happy, beautiful and loads of fun!!!

Growing so Fast!!

2010-10-27T09:59:00.000-07:00

She is such a happy little girl!!

Inch Worm Crawl

Food!

BFF :)

2010-10-27T09:51:00.000-07:00

Circus of Dreams

2010-10-27T09:48:00.000-07:00

We went to the Circus of Dreams again this year and all of us loved it!! I did not take too many pictures but that's because we where busy having fun!

Heart Walks

2010-10-09T16:43:00.000-07:00

"I get to be a surviver today!"

Last weekend Steven Izzy Nola and I walked in two heart walks. We did the survivor loop at the American Heart Walk and then hurried over to Green Lake to walk in the It's My Heart CHD walk. The walks started within an hour of each other but we made it had had a lot of fun supporting both walks!

Shop For a Cause: NOVA-PHACE

2010-09-20T12:03:00.000-07:00

Attention Macy's Shoppers: Find the Magic of Giving Back
Saturday October 16, 2010

Since 2006, Macy’s Shop For A Cause Event has partnered with non-profit organizations nationwide to raise more than $34 million for their ongoing charitable efforts. This is your chance to be part of this monumental event
on Saturday, October 16, 2010.
Shop For A Cause gives you the opportunity to give back to your community
and to help our organization. Purchase a $5 Shopping Pass* for
exclusive savings in every Macy’s store and online at macys.com on
Saturday, October 16th, and we keep 100% of the proceeds.
Plus, you can enter to win a $500 Macy’s Gift Card.
Find the magic of giving back, as Macy’s celebrates a national day
of support for our community.

We are selling passes for Macy's Shop for a cause!!! Please contact me if you would like to purchase a pass to shop and save at Macy's Oct 16th!! The passes are $5.00 and proceeds from selling the passes goes straight to NOVA- which supports PHACE Syndrome research and families!!

If you would like to help please email me

Sleepover!!

2010-09-06T13:39:00.000-07:00

Izzy and Stella had a sleepover last night! They had a lot of fun playing together and Nola loved watching them use Steven as a jungle gym! The girls decided Steven was The Shadow man from princess and the frog and saved items that he took! lol! It was fun having Stella over and they did great playing together the whole time!

Heart of Sailing

2010-09-06T13:19:00.000-07:00

We went sailing with Heart of Sailing and anther herat family this weekend. Here are a few pics!

2010-09-01T00:07:00.000-07:00

Izzy has been back in her brace for a couple of weeks now. She has gotten used to it again and so have Steven and I. Sounds silly right but when your 4year old runs up to you full speed for a hug with a Milwaukee brace on your going to hurt if your slow!! We can't hug her like we can with out the brace. The bar on her chest hurt us and the ones by her neck hurt her if you hug to high up or tight. Piggy back rides are a whole other issue! I have to remind her to be careful with others because the brace is hard and the metal bars hurt. Friends have been bruised by innocent hugs! In a brace her balance and ability to bend are challenged which causes more falls and harder falls at that.She was 2 when she got her first tlso brace then went right into the Milwaukee brace without a break and has not had more then a two day break from her brace until this summer. 6 weeks without her brace was new, being able to move freely, cuddle and hug fully when ever she wanted to, climb and bend and wear all kinds of cloths. She liked all those freedoms and after being in the brace for so long and really not having the best gross motor skills at 2 she has not known that freedom until now.

I am glad that she has the brace to help her back, I am a stickler about her being in her brace but I miss those soft hugs and her hippy walk while she is in it! Izzy knows her break times and multiple times a day she asks if it is 3:30 yet! She wishes she did not have to wear it. She refuses to play dress up at home with her brace on. She says she can't be a princess with it on. She even told us it makes her look different and fat. It is frustrating but the choices are slim. Hearing her feel sad about the brace is hard but tiring to avoid some major back surgeries is worth it. I really hope that her brace works!

She is beautiful and we tell her she is beautiful all the time. Her most common reply to the compliments from mom and dad ....

"I know, I'm a princess musketeer rock star fairy"

Her cardiology apt went well. Her new pacemaker is doing great:) She has a whole new energy level too. Her underlying heart rate is still the same, it is nice to know that her underlying rhythm has not slowed too much as she has grown. This apt was a post op pacemaker check so she did not have an echo or other tests, she goes back in 6 mths and at that time will have the works. Everyone was happy to see her running around and commented on her new energy level!

pics and random tidbits

2010-08-28T10:51:00.000-07:00

Musketeer rock star princess Izzy role playing for her sister and I.

Izzy went into a dragon cave to save the day and the princess:)

There are the big smiles Nola gives her sister!!

I'm in love with my girls:)

We have been busy as usual. Izabell was in Drama camp and had a lot of fun. We registered her for the fall program. Izabell had her Doppler apt last week and she was so good for the apt that they got the all the images needed the first day and we did not have to go back!!! Wahoo!!! Nola did great though her sisters apt too:) Next week Izabell has a cardiology apt on Monday to check on her new pacemaker. She also has open house for preschool this week. We are going to a friends house on Wednesday who has a baby girl a couple mths older than Nola and it will be fun to visit with hem! Thursday my friend Jackie's twins are turning 2!! Are week is full of fun little plans and I am enjoying the fact that our life is becoming busy because we have fun thing to do instead of because we have so many Dr apts!!! We still have apts of course but they have spaced out and we get to squeeze a lot more fun into the mix!!

We are going to go to Steven's work today for the family fun day. His coworkers have been wishing to meet Nola and see Izzy again. It sounds like a lot of fun!

My stomach has been sore and swollen laity and I am not sure if it is still from the c section. I can still function and jog ect but I notice more pain the busier I am and by the end of the day I am standing at an angle. I'm not sure if this is expected this far out or not. It is sensitive to pressure and swollen at times. I am calling the Dr on Monday.

Nola laughs out load now! She loves the song Slippery Fish. She has been rolling since 2 mths! She also scoots forward not army crawl more like her feet and knees push her face first on the floor! She is determined to move!! She is a very happy baby!! We are all enjoying her!

I am taking the girls to Chicago on the 11th! I am looking forward to seeing my family there and introducing Nola to my Aunt:) Izzy can't wait to see her cousin Coral! We will drive down to Wisconsin and meet Steven and his family there for the PHACE conference. We are all looking forward to seeing our PHACE family friends and get new and updated info on PHACE.

Drama Camp Share Day!

2010-08-27T17:37:00.000-07:00

Covey Run 2010

2010-08-22T11:46:00.000-07:00

Steven Izabell and I ran in the Covey Run yesterday. Nola snoozed in the stroller the entire time:) Izzy ran a good amount of the loop!!! She is getting so big!! Enjoy the pictures!! Proceeds from the Covey run benefit Children's Hospital's Uncompensated Care program. Both our girls are now helped by this program! I can not imagne where we would be without the program helping with Izabell's medical bills! ........

tooth fairy conversation

2010-08-14T11:38:00.000-07:00

Izzy's 1st Bike Accident.........

2010-08-13T09:37:00.001-07:00

Izabell's third outing on her new bike ended in a big fall. She landed on her face and knocked out one tooth on impact and the second tooth was broken and sideways in her mouth. Steven picked her and the bike up and ran home. (all the marathon training paid off) I was home had dinner waiting and was about to give Nola a bath when her rushed in the house with Izzy. She was crying and had a lot of blood on her face and shirt. Nola was lucky to get a onsie on as we rushed off to the ER. Izzy was a rock star!! She was calm the entire ride to the ER and though most of the time there! She had to have the second tooth pulled which was done by the on call dentists. She is not a fan of dentists at all! She needed shots in her mouth and had to be wrapped in a blanket for the shots and extraction. Steven and I where at both side of her tyring to help her. It was very hard to watch and both of us had to look away at times. The dentists did work fast and the tooth extraction probably lasted about 5-10 minutes. Sadly I think all the work we have done to get her comfortable her dentist is going to be in vain. She has to go in next week for a follow up. She had scratches on her pacemaker incision so the ER Dr's had to consult with cardiology. The cardiologist ordered Xrays and an EKG to make sure everything was fine. We where at the ER from 8pm until 4am! Izzy does not seem to be in much pain. Her lips and nose are a little swollen and she has some minor scratches but is doing well. She enjoyed some ice cream for breakfast and is looking forward to a movie day. Nola was with us the entire time in the ER and fell asleep around 10pm and slept until we got home. She is such a good sleeper which really helped last night! We are all a bit tired today but thankful that Izabell is feeling better! Her adult incisors should come in when she is 7-8 years old. We did find and have both teeth. Izabell is looking forward to a visit from the tooth fairy tonight!

Below are some picture from the ER and in the morning.....

Warning: it looks pretty bad so stop reading/looking now if needed!

Quick update

2010-08-08T16:16:00.000-07:00

Izzy started back at the JCC summer camp last week. She is having alot of fun there! She is doing well and was cleared on Friday to go back into her back brace. She is less excited about this and has given us some grief but she is coping. Her energy level has gone through the roof! Mine however has not! I am worn out! lol! We have not had any Dr apts to report on, yeah! We got Izabell a new bike yesterday!!!! She fits on a 16" bike!! She is growing up so fast!!! She looks so cute on her bike and is doing great riding it! Izzy loves her little sister and is starting to enjoy time with her more now that Nola is more responsive! MNola loves watching Izzy do anything and is all smiles for her big sister! Nola is doing good and growing fast too!We got our plane tickets for the PHACE Conference in Sept!

Growing like a wild flower :)

2010-07-31T22:31:00.000-07:00

Nola has grown so much!!! Here are some pictures of Papa holding her at the hospital when she was two days old and then some pictures of Papa holding her today!!

rocking the dentist chair

2010-07-28T16:58:00.000-07:00

Izabell did a wonderful job at the dentist today!!! I am so proud of her! There where no tears this visit! She was very nervous in the car on the way but I put a CD story on and she listened to the story and it kept her mind of the dentist on the drive over. She walked in and started to get a little attitude in the waiting room but then the dentist called her back and offered her some gold sparkling sunglasses to wear for the apt. Izzy was so excited she sat in the chair on her own! She took turns with the dentist. They would brush and check her teeth for 10 seconds then Izzy would look in the mirror and do her own teeth for 10 seconds! This worked very well!!! Normally Izzy does not like anyone putting things in her mouth and she did such a great job today!!! Her dentist is wonderful and they really helped Izzy feel safe with them! She has gone to the dentist every 3-4 mths and she has been very nervous and cried every time. She has always sat on my lap and was unhappy with anything in her mouth including the tooth brush! In past apts the dentist offered to let her play with the other tools and Izzy refused. Every time she has improved a little and today was such a good day!!This time Izabell played with the suction tool, the water and air tool and even put them in her mouth on her own!! Izabell has a cavity and so the dentist put some protective coating on the tooth. Izzy goes back in 4 mths and if the cavity is worse Izzy will have to go to the OR to have it treated. The dentist said that we are doing a good job cleaning her teeth and that the cavity is a result of her tooth enamel defects not bad oral care. Hopefully we can fend off the cavities and continue to make progress!

Izzy's Ballet Recital

2010-07-26T01:01:00.000-07:00

2010-07-24T13:01:00.000-07:00

Fun:)

2010-07-24T11:28:00.000-07:00

Izabell's surgical incision got infected and she was put on a another round of oral antibiotics and also some topical antibiotics. It has been 8 days and she still has a scab and redness but it looks much better. We have been having fun though Izzy definitely misses swimming!!

In the last two weeks we have:

Visited the Seattle Aquarium with Bubbie and Zaydie. The octopus is really cool! Izzy really liked watching the octopus swim around and change colors! So did I!
Visited the zoo twice. Once with Bubbie and Zayde and once with Kelley and Stella. Izzy loves Stella and they get along great!
Went to the Echo Lake neighborhood picnic at the park. Kelley and Stella are also in the Echo lake neighborhood so we enjoyed having friends our age at the picnic!
Went to two concerts at parks! The first one was in Shoreline and was a classic rock cover band. Kelley and Stella met us there. The girls had a lot of fun paying in the sand, dancing barefoot to the music and got super sticky enjoying some shaved ice and candy art necklaces! The second concert was on Bothell and was country music. Missy and her two kids DJ and Samantha invited us:) Steven made it to this one early and we all had a great time!!
We have been going to the gym with Kelley and also Annemarie. I'm sore!! lol!

Nola is growing so fast!!! She is already 11 weeks old!!! She is already rolling from her back to her belly and from her belly back to her back!! She is rolling around like crazy!!! I love cuddling with her and Izzy loves playing with her!!

I'm sure I'm forgetting stuff but we have been having a lot of fun and enjoying the wonderful weather!! My camera broke and so I don't have many pics from the past couple weeks. Steven's parents gave us their unused camera which arrived yesterday so I have a couple pics of my girls to post:) Thank you so much David and Ina!!!

doing good!

2010-07-10T10:42:00.000-07:00

Izabell is doing great! She is feeling much better and is full of energy! We had a nice fourth of July. Izabell and I went downtown Edmonds to watch the children's parade and she enjoyed gathering up all the candy tossed her way. We did not go watch fire works since the morning outing had worn her out. We lit a fire in the fire pit and roasted marshmallows and all enjoyed smoores:) It is hard to keep Izabell down after four days she was bored and restless with Izzy personality that just screams out trouble! lol! We spent a day at the zoo last week. She had fun and was wiped out by the time we left. Izzy had her one week post op apt with cardiology yesterday. Her wound is healing nicely and she will be able to do a bit more after her steri-strips fall off. With all this sunshine it would be nice if she could swim and play in the sprinklers! We are looking forward to those activities! As long as she keeps healing and doing this good she will be able resume activities in four weeks! Wahoo!!

Nola had her 2mth check up on Thursday! She is growing so fast!!! She weighed in at 10lbs 10oz!! Her weight is in the 50% and her height is in the 75% at 23 1/4 inches! I told Izabell she better be nice to her little sister because Nola is growing fast! Nola also had her first group of vaccinations Wednesday. After having a heart baby I am not used to how red healthy heart kids can get! Nola was so mad after her shots she turned crimson and let out some high pitched screams! She was not happy!! I am glad Izabell was at home because I think she would have had a fit to see her sister get shots. Izabell is protective and terrified of shots so I was very thankful that Bubbie and Izzy decided to go for a walk carriage ride instead of coming to Nolas apt!

home and healing

2010-07-02T16:37:00.000-07:00

Izzy had a rough night last night. She woke at 1am in a great amount a pain and it took me a while to calm her after giving meds. She was crying, shaking and pale. :( I set my alarm after that and snuck her meds in before she had time to panic. I cuddled with her listening to music until she was back asleep which helped calm her. When she woke this morning she was feeling much better! She is walking on her won now though very gingerly. She is happier and finally ate! She has been watching lots of movies. She is currently napping on the sofa and Nola is napping in the swing.

Sweet dreams of the sofa

Nola and Izabell's baby doll enjoying the swing.

Izabell is HOME :)

2010-07-01T17:58:00.000-07:00

Izabell is doing well and is home now!! She was discharged around 1:30pm and is now home watching movies and drifting in and out of sleep on our sofa.She is not wanting to eat or drink much but is at least holding down what she does take in now. She is the most comfortable while resting she has only walked a few steps and is not happy while doing so and we are not asking her to do it any time soon. She is happy to be home and especially happy to be free of all the bandages IV's and wires! She is still very sore but in a good mood. She is a rock star! We are so proud of her!! She is so brave, strong and just amazes us more and more every day!!

here are some pictures of our big girl. She was sore and tired but look at all the big smiles our
"rock star musketeer princess" (this is what she prefers to be called now a days) shared with us though out her hospital stay!

Izzy quote of the day....

"Dad did I forget to kick surgery's butt?"
We of course told her she did not forget!!! lol!!

working on healing

2010-07-01T06:32:00.000-07:00

Izabell has not been able to keep anything down so our goals right now are to get some food and liquids in and keep them in. She did keep a dose of Tylenol down at midnight then fell asleep and slept for about 5 hours so that is good. She is still uncomfortable and needs for meds but the pain meds upset stomachs and she is not keeping anything down. She is not crying just telling it it hurts worse. The nurse just gave her some Oxycontin and Izzy is eating some toast and is getting antinausea meds though her IV so that hopefully she will keep down the food and Oxycontin. She has not tried to move around at all since she is uncomfortable. She is going to get a chest xray within the hour to check her pacemaker placement so at that time we will how she handles moving form the bed to the wheelchair. She is excited to ride in the wheelchair so hopefully the mode of transportation will help:) If she starts keeping down food and fluids and her pain is under control she will be able to go home today.

out of recovery and on the floor

2010-06-30T17:04:00.000-07:00

Izabell stayed in recovery a bit longer than an hour. She was uncomfortable crying and her O2 was dropping so she they needed to give her morphine and see how she tolerated it before moving her to the floor. She has been on the floor for about an hour and a half. She tired some apple juice which did not agree with her :( She has been able to keep some Popsicles down so hopefully she can try to drink something again soon.
She is now on the 4th floor in room 4017 bed 2. Our cells do not work well here so email text or call the hospital to reach us.

The surgery went well but they had some unexpected things come up. When they removed the old pacemaker it was not in the typical spot (between the muscles) in her abdomen, it was below both muscles. It was probably but in this spot because she was so small when she got it at 9weeks. When they removed it a hernia was revealed behind it and so another surgeon had to come in and close the hernia before they could continue which may cause more discomfort than originally planned. The new pacemaker is 40% larger than the old one. This larger one was placed between the two layers of stomach muscles. Sine it is in a new place she is expected to have more discomfort then a straight forward replacement. Her valve pressures where really really good! We are very excited to hear this! This is wonderful news!!! They are better then what the echos where showing them to be!!! Wahoo!! Go Izzy go!! The plan for the evening is to control her pain and hopefully get some fluids and food in her with out trouble. If she is still needing extra pain meds tomorrow then she may need to stay an extra night.

Izzy's friend Sydney and her mom stopped by to visit her! Izabell was very happy to have a friend stop by! They brought her some balloons and a painting activity which she is looking forward to playing with! Thanks:)

My friend Kelley watched Nola though out the day until Steven's parents arrived about an hour ago to take over for her. Thank you Kelley for helping and cuddling with Nola for me:) She has sent updates though out the day letting me know Nola is doing great. Steven's parents are bring Nola to the hospital as I type to visit her big sister. I will cont to update.

OR update

2010-06-30T11:51:00.000-07:00

We got here at and checked in around 7:50am. Izzy was in good spirits until right before going to the OR. She was crying and scared as we got ready to walk to the OR telling us she wanted to "get out of the surgery." It is always hard to send her off to the OR . She choose to take her moose with her that her Uncle Goon gave her. Shalula is in the car waiting for us to get a room on the fourth floor:) Izzy had me gown up and carry her to the OR this time and stay with her until she was under. She choose root beer flavored gas and fell asleep with out any troubles. We have some surprises for her when she wakes up to try to ease her recovery. She will be on bed rest with no sitting up or moving for 4 hours after then will be on restricted activity for 6 weeks. She went into the OR around 915-9:30 and the procedure is expected to last 3 hours.

Izabell is doing well in surgery. They have finished with the catheter portion of the procedure and though our phone update we are told that her pressures look good!! Yeah!! They are now taking out the old generator and placing the new one as I type. She is doing well though out, her sats are looking good. Our next update will be when she is out of the OR and in recovery. Her Dr will come out and talk with us at that time to explain everything in more detail (valve pressures ect) She will be on the cardiac surgery floor (4th floor) when she is moved from recovery.

I'll update more when I get another chance...

Izzy's Pacemaker Surgery

2010-06-30T11:04:00.000-07:00

Izzabell went into surgery this morning at 9:15 for an estimated 3 hour surgery to replace her pacemaker. Afterward she should go to recovery about an hour then to the floor.

Waiting room Art, Nola's hips and Izabell's surgery tomorrow

2010-06-29T23:38:00.000-07:00

Izzy drew this "upsidedown wedding" picture while waiting for Nola's Dr today:)

The bride has eyelashes and makeup. She is too cute!

Nola enjoyed watching her big sisiter draw :)

We received great news today at Nola's apt!! Her hips are looking great now and the changes in her numbers where right where they needed to be!! No harness for Nola!! She goes back in 3 months for xrays to make sure her hips continue to progress in the right direction. Yeah it is always nice to get good news:) Nola did great though the ultrasounds and apt:)

We check Izabell in to the surgery center at 7:45am. My friend Kelley is going to come over in the morning to watch Nola (Thank you sooo much Kelley!) Stevens parents will be here in the late afternoon early evening to help with Nola and will stay to help with Izabell's recovery. They are going to bring Nola to visit Izzy at the hospital. I will be missing Nola but glad to have so much help so Steven and I can be there with Izzy with out worries:) I'm not sure how long surgery will be but we will update as the day goes on.