2011 Santa visit

We took the girls to visit Santa on Saturday. It went just as I thought it would. Lexi hopped right up on his sleigh and told him what she wanted and Madison grabbed my arm for dear life as I put her on his lap and then screamed! We tortured her,I know, but we had to have a photo for the memory books. Santa didn't seemed bothered by it at all, he acted as if it happens all the time.Alexis told Santa that she wanted a Ariel Little Mermaid alarm clock that flips her tail when it's time to wake up. "And Santa said okay when I told him. I think he's going to get it for me, Mama", she states with the utmost confidence. I give the girl a lot of credit for her imagination because when we asked her where she saw it, she said, "I didn't see it anywhere, that's what I want the elves to make me, you know with red paint for her hair and green paint for her tail." Okay, then! We've searched all the stores we know and the world wide web and I am not sure there has ever been one made. If Santa and his elves figure it all out, he will make a BELIEVEr out of me!
Although, we are not too sure how much she believes in Santa because I've already been asked if I was going to play Santa this year. And in a few other conversations she asked if we could get her a red suit so that she could play Santa and bring the gifts. She's also quite concerned that we don't have a chimney and she says he can't come in the back door. You've seen the Santa hat in all the photos since Thanksgiving - she thinks she's Santa! Christmas morning should be fun and interesting - I hope no one is disappointed.

Cardiologist Appt.

On Friday, we went to check in with Dr. Jedeikin for a post-op visit. We didn't have an echo because they said her echo she had at the hospital before they discharged her looked pretty good. He did a thorough physical exam and she had a EKG done. He said she looked good. Lexi and Dr. J talked a lot about Santa at the visit. He said she could be weaned off of her two remaining medicines (Lasix & Ibuprofen). We've been doing that as ordered this week and Lexi is excited that she doesn't have to take any more medicine. It's so weird because she has been on Atenolol since she was 9 months old so we are establishing a new morning and bedtime routine without medicine. I still find myself reaching for the syringe to dispense it. She got the release to go back to school when it begins in January. No playground or physical activity where she could fall and hurt her sternum, it needs approximately 8 weeks to heal back together after being split open. But she is just so happy to be able to go back to school and see her teachers and friends. She keeps asking if we can go see the snow and go sledding. Dr. Jedeikin said we will talk about that at our next visit at the end of January. The poor girl, all she wants for Christmas is to see the snow. Everytime we talk about Christmas Day she asks if there will be snow then. Having lived in a colder climate for 21 years, I don't miss it a bit. But to her it's a winter wonderland that she's never seen before! We do hope to make her wish come true and take her up to see the snow in February.
We are getting prepared for Christmas here, gifts are bought, stockings are hanging, the tree is trimmed, the gingerbread house is built and decorated, the mailed packages have arrived. We just have cookies to bake & decorate and gifts to wrap. It's beginning to look like an Arizona Christmas (without snow). :)
Not sure if more candy made it in Lexi's tummy or on the gingerbread house!The girls all snugly in their fuzzy pajamas!

You know it's love when . . .

your big sister picks your toe jam out of your toes!

Oh, Christmas tree!

We picked out our Christmas tree this weekend. Both girls were a big help, especially with the decorating! :)We've been having Xmas concerts in front of the tree everyday!

Post - op Surgery Appt.

Yesterday, I took Lexi back to Phoenix Children's Hospital for her wound/incision to be looked at. After her shower, her incision was looking really red and she said it hurt really bad when I touched it. Taking all precautions, I emailed photos of her wound to the Cardiac Surgery NP and she called me and said to come in. While we were there, we just decided to do her post-op appointment so that we didn't need to make a separate trip back. Thankfully, Kristen (Surgery NP) said the incision looked great and it was just a little irritated from Lexi's shirts rubbing on it and the scab was ready to fall off. Kristen discontinued her pain med (LorTab) and said if she needs anything for pain just use Tylenol. After her appt., they sent us down to Radiology to have a follow up chest xray. After about 45 minutes, I could no longer contain the girls and we took a "waiting room" break and went to the cafeteria for lunch and then came back for our x-ray. The hospital is all decorated for Christmas so we took a tour of all the different decorated trees (there are probably 20 trees in the main lobby area and they all are decorated in unique themes by different sponsors). Lexi's favorite tree - the LEGO tree - all ornaments are made out of legos
We quickly stopped by Cora's room to say hello since we had a quick good bye at discharge. We have a follow up appointment with Dr. Jedeikin (cardiologist) on Friday, Dec. 16th. We'll keep you posted on the outcome of that appointment.

10 days Post Op

Lexi is doing great. Stronger and stronger each day. She rarely complains of pain and when she does it is usually because she is doing something she really shouldn't be doing (pulling herself up into chairs/car seat). They said she had no restrictions and that children are self-limiting but sometimes I think she forgets she is still healing (it's a hard concept for 4 year olds to understand). She refers to her incision and the hole from her chest tube as "her crack and her hole". I believe she is referencing the book Franklin Goes to the Hospital. Franklin the turtle has an operation at the hospital to fix the crack in his shell. We've had several visitors this week and Lexi has really enjoyed seeing everyone, especially since we haven't left the house besides going to the doctor and taking rides in the car to look at Christmas lights.
Today, she received a beautiful painting for her room from all the kids in her class. It's adorable - a big heart with all of their hand prints inside of it. I'll have to take a picture. She loves it and it's already hanging on her wall next to her bed. Thanks to Mrs. Osman for a great idea and gift!
I've been doing my best to find "projects" for her everyday. Monday & Tuesday we began decorating for Christmas and we plan to get our tree this weekend. All of the arts and crafts she has received from friends and family are wonderful and help keep her busy.
(Photos coming soon - we got a new camera and need to get them uploaded to the computer)

We're Home

Lexi had a really good night last night. She slept the whole night without waking for pain medicine and she was able to keep her Oxygen Saturation levels in the high 90's without needing oxygen. Also, last night she had a bowel movement before she went to bed (that was another thing on her "to-do list" to be discharged.) We received the Echo report this morning and it looked good and was the same as when they did it after surgery. We went back to the playroom again this morning before we left while they were finishing the discharge papers to make some more pigs (paper plate pig craft) and we said goodbye to her new friend Cora. We left the hospital about 12 noon and had to look at all the beautifully decorated Christmas trees that they have put up around the hospital this last week. Lexi wasn't able to leave her floor/unit because of all her monitors and she kept asking the nurses if they were going to decorate the hospital for Christmas. She came home on a few different medicines (Ibuprofen, Lasix, and a pain medicine). Lexi hasn't really complained of too much pain today and is beginning to be herself again. It's wonderful to be back home and have all of our family under one roof and together again. Madison has been giving Lexi tons of hugs and kisses. Thank you all for your help, gifts, prayers, support, and love during this difficult time. We are very blessed with Lexi's outcome from the surgery and blessed to have family and friends like you.

Post Op - Day 3 - We're Getting Close to "HOME"

Lexi had a pretty good night. She needed pain meds at 2 am and then some other meds at 4 am. She's still needing oxygen when she sleeps but not when she is awake. She has a small area in the lower lobe of one of the lungs that is slightly collapsed. She needs to do some more breathing exercises to help open up her lungs and improve that area. This morning we bathed, got dressed, ate some Trix for breakfast, and walked to the playroom to make more crafts with Cora, her new heart friend.
After the playroom, we came back to the room because Lexi was tired and needed to rest. While she was resting they came to do an ECHO (ultrasound of her heart) to see how it looked since surgery. We haven't received the full report, but her surgeon was here when they were doing it and he seemed pleased by what they showed him.
Vanessa from Mended Little Hearts came to visit and brought us some food and fun things. She also had a visit from Juliet, the gray poodle. And then we went back to the playroom to make a pink pig face & tissue paper Christmas tree. They have lots of fun crafts and keep the kids really busy.
Lexi just finished her breathing treatment (EasyPap)to help with her lungs and is watching The Lion King movie in bed.
They are in the process of decorating the hospital for Christmas and we are hoping to be able to take Lexi for a walk later to see all the Christmas trees and the trains that are in the old PICU where she used to stay when she was here previously. Tonight, Gramma Cindy & Papa Tom are coming to visit Lexi while Mommy and Daddy take Madison to the Winnie the Pooh Christmas show with the HopeKids. We are getting closer and closer to coming home each day. It's been a busy day and I am sure Lexi will be tired tonight.

Post Op - Day 2

Lexi had a pretty good night last night. Mommy slept with her half the night. Today's goal has been to walk, get out of bed, and have some play time!
She hasn't had much of an appetite since that big breakfast yesterday. We just finally got her to eat some strawberry ice cream at 3:30 pm. And she is drinking some water and juice.

Today, we gave Lexi a little bed bath, fixed her hair, put on some of her own p.j.'s. She looks quite cute. :) After we got dressed Lexi walked to the playroom where she painted a christmas tree ornament and painted a picture. She met a little girl, Cora, who is the same age. Lexi ended up getting sick right as we were getting to leave the playroom so we rode in the wagon back to her room.

Lexi and Auntie Laurence playing "doctor"

She has lost quite a few more "tubes" today. The biggest progress was getting her chest tube out (the tube that is in her chest right below her incision to remove excess blood around the heart) and her iv that was in her neck removed. After they removed the dressing from her incision today she had a visit from "Tiger" a little shitzu dog and they had lots of cuddles together.

Lexi and Tiger

Lexi's pain has been better controlled today and her spirits are much better. The nurse said she could possibly go home tomorrow or Friday! We have another walk to do in awhile, so hopefully that goes well for her. And little sister, Madison, may be coming to say hi to Lexi tonight if everyone is feeling up to it. She's been having lots of fun with Gramma Cindy & Papa Tom.

She Did It!

At about 4:30 pm today, Lexi got out of bed and sat in the chair! She sat in the chair for about an hour and did really good. She's even gone to the bathroom twice on the potty chair. We gave her her very own personalized Heart Super Hero Cape to give her a little motivation. She decided to use it to cover her legs in the picture. I know tomorrow when we walk she'll be wearing it with pride around her neck! (more photos to come) This was the first smile she has given us in 2 days! Even though it wasn't 100% natural it still makes us feel good.

Post Op - Day 1

Lexi is doing good.
She had a pretty good night. She was rather uncomfortable around 4:30 am and we spent quite awhile trying to relieve her of her stuffiness she has in her nose. Lexi does not like the oxygen through the nasal prongs, but we've managed to get her to keep it on.
She got some of her "tubes" out (IV lines, catheter, & monitoring devices) and removed this morning. She ate a good breakfast of eggs, ham, & cheese this morning with chocolate milk to drink and hasn't had anything since besides ice chips. She has been in quite a bit of pain since they discontinued her IV automatic pain meds and she now has to request them. I am sure in a 4 year old mind, she doesn't understand yet when she needs to ask for them. I just had to finally tell the nurse to give her something because she was miserable but she kept refusing to accept the medicine when they asked her if she wanted it. She has been awake most of the morning reading some books with the volunteer, blowing bubbles (to help expand her lungs), and watching some TV.
Kym (heart mom to Isie) came by to say hello and dropped off a few things. It was good to see & chat with someone besides medical staff. Don't get me wrong the medical staff at PCH is great but it's nice to see a friend.
She is now finally resting peacefully. It breaks my heart to see her in so much pain. She just keeps complaining that her whole body hurts. We've been waiting for physical therapy to arrive and of course, they finally arrived after we got her all settled down and resting. She hasn't been out of bed yet and I know that is a goal for today so that will likely come later this afternoon sometime. Thanks for all your prayers. We hope the recovery will get a little easier for her in the next few days.

Surgery Day 1

Wow, what a day it has been. Alexis is amazing! You guys, her support & prayer team are amazing! We have been so blessed today and we have all of you to thank dearly. With Alexis' strength and the power of prayer she has made it through this long & hard day.
She is resting peacefully in her room and still pretty sleepy. She does wake up sporadically for ice chips and apple juice and when she is awake she is more alert and responsive. Tonight, they are going to try and wean her off the oxygen face mask and onto oxygen through the nasal prongs. And then tomorrow she will get out of bed and go for the much anticipated wagon ride.
Thank you all for your emails, comments, texts, and phone calls. Know we are receiving and appreciating them and will try to respond to you soon. Some have asked if she can have visitors and she can, but PLEASE make sure you contact us first by phone or email to see if it is a good time. You all have made this difficult time a little easier for us to handle.
Much Love,
Erin, Rick, Alexis & Madision

Surgery Recovery

Alexis is in her room recovering.
Since the last time I posted . . .
10:50 am - off the heart-lung bypass
11: 10 am - another esphogael echo to measure the progress/outcome of the surgery
11:45 am - surgery is finished and she is moved to her room in CVICU and Alexis is still doing great

We spoke with both Dr. Nigro (cardiac surgeon) and Dr. Jedeikin (cardiologist) after the surgery and they said that the surgery went great. He removed a great amount of bad/scar like tissue from underneath her pulmonary valve (PV) in the right ventricle. They evaluated the pulmonary valve and decided not to do anything to it in fear that if they did something to it she could get a great amount of leakage which would cause different problems. Dr. J isn't really sure why the bad tissue grew and grew so fast and he said it's a rather unusual case. Overall, they are happy with the outcome, the stenosis (narrowing) in the PV is mild-moderate and they feel it should be very tolerable.

We were so happy to see our little girl. She seems to be recovering well. She was taken off the ventalator in the OR so that is a good sign that she wants & is breathing on her own. The staff are now just monitoring her fluid output and meds. She's mostly sleeping and waking a little every hour to say a few words and open her eyes. She is such a brave little heart hero.

Progress

We've had a few updates from one of the nurses.
At 9:11 am the anesthesiologist had just finished getting in all her iv lines and the cardiologist had done her esophageal echo to take a look at the heart at it's current state. They were ready for the surgeon to begin. She is doing great and had no problems putting on the mask for anesthesia.
At 10:10 am She is doing great and she is now on the heart-lung bypass machine and the surgeon will begin to repair her heart.

Heart Mom

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.

I thought, "am I to blame"?

I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night,
it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life,
and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.

From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown

Open - Heart Surgery

Alexis' surgery has began. They took her right back to the OR right on time at 8 am. We played Hi-Ho the Cherry-O and Princess Memory while waiting in Pre-Op. And then she watched a Franklin movie and was still watching it as they took her behind the OR doors. She seemed a little scared as we said our goodbyes but she was doing such an amazing job of being brave. We are now just hanging out in the surgery waiting area.

Here's a brief explanation of what they will be fixing in her surgery today. Alexis has stenosis (narrowing) in her Pulmonary Valve and has for the last 4 years of her life. In the last 6 months the stenosis has also developed beneath the valve (subvalvular stenosis). The doctors have been able to manage the stenosis in the PV (pulmonary valve) the last 4 years by doing balloon dilation of the valve with a catheter through Lexi's leg. Unfortunately, it has come to a point that it can no longer be fixed with a catheter procedure and it now needs surgical intervention. Today, Dr. Nigro and the surgical team will resect the thick tissue muscle that is causing the obstruction underneath the valve in the right ventricle and then work on making the pulmonary valve preform better without actually replacing it. Part of what is causing the stenosis in the PV is that the leaflets of the valve are thick and domed, they should be like tissue paper and Lexi's are like cardboard.

Pre-Op Appt.

We told her Monday night, that she needed to go back to the hospital to have her heart fixed again. Her first response was, "Oh, my heart is broken. That's sad." We talked a little bit about staying overnight at the hospital and what she wants to pack in her bag. She asked all her important questions, like, "do they have stuffed animals there?" And then after a minute or so she said, "let's play this game." And that was the end of the conversation. We wanted to prepare her for her pre-op visit & tour the next day.
Yesterday, Alexis went for her pre-op appointment at the hospital. It was a very thorough check up to make sure she is healthy enough to undergo surgery on Monday. It began with lots of paperwork at the Admissions desk and then onto meet with an anesthesiologist to explain their process and a little bit about the ventilator and heart-lung bypass machine that she will be on during surgery. We also met the surgery nurse, Kristen, who will be very involved in Lexi's care during the entire process (pre-op, during surgery, and post-op). They did some lab work, a chest x-ray, an EKG. Towards the end of the appointment we met with the Child Life Specialist who works in the CVICU and she gave us a tour of the new unit. All tests and reports came back good, so she is set to have her open-heart surgery Monday, November 28th at 8 am. We will arrive at Phoenix Children's Hospital (PCH) on Monday at 6 am and we will check in and hang out in the surgery pre-op area and meet with Dr. Nigro (Lexi's surgeon) one more time and probably a few other people. The surgery is expected to last around 4 hours.
This week has been busy with dr. appts. and other things and it's been a good distraction. I have to say as scared and nervous as we are as parents, I think after our pre-op appt. I kind of had a little bit of a feeling of peace. I feel that we have asked all the questions that we want ask, we've met quite a few of the people who will be on her surgery team (and we really like them and feel comfortable & confident with them), and now the rest is up Lexi, her heart, and the Lord. Thank you to all of you who are praying for Lexi!
We are excited to see Gramma Cindy & Papa Tom who will arrive tomorrow night to spend a few days with Lexi before she goes to the hospital and help care for Madison while Lexi is in the hospital.
We wish everyone a blessed Thanksgiving! And we will post as soon as we have an update on Monday. Thanks again for all your love, support and most importantly prayers! Keep them coming.

Surgery Date

I apologize for not getting this posted sooner.
Alexis' surgery will be on Monday, Nov. 28th at Phoenix Children's Hospital.
The surgeon recommended we keep her out of school to limit her exposure to cold/flu germs. It was a long week at home trying to keep her busy. We took a field trip on Monday to see the last Locomotive Steam Engine in the US - (Dad's choice). Planted a garden on Thursday (basil, tomatoes, and marigolds) Worked on writing the letter I i - this letter didn't require much help. :) Cutting, gluing, counting, and coloring. I met the Child Life Specialist on Thursday night and she gave me some isolation masks for Lexi to wear when we do take her out in public. We've only taken her out twice and she has been such a good sport at wearing them with no complaints. She understands they are to help keep her healthy.
Her Pre-op appointment and screening is on Tuesday. It includes a chest xray, blood work, EKG, and a tour of the CVICU floor. Which means that on Monday night we will have to tell her that her broken heart needs to be fixed and she will now and forever have a line that marks the door to her beautiful heart(one of the hardest parts for us as parents).

We need your prayers!

Okay, so I realize it's been a LONG time since we have posted anything. Life has been challenging lately. . . (not only did Rick lose his job) but we found out about 2 weeks ago that Lexi would need open-heart surgery. We have prayed for 4 years that this day would never come but it is coming and it will be here in just a couple weeks. It's been a lot for us, as parents, to swallow and digest. Tomorrow we meet with the surgeon that our cardiologist has recommended and who we will soon put our daughter's life in his hands. I know there are a lot of details that I need to write about (that's a post in itself) but I just wanted to get the message out that we need your prayers right now and in the upcoming weeks. We believe in the power of prayer and we hope that you do to. We promise to keep you updated. As soon as we have a confirmed surgery date I will post that, too. A big thanks to all our family and friends that continue to provide us and Lexi with your support on her fight against Congenital Heart Disease!

Happy 1st Birthday Madison!

Happy Birthday little Maddi-cakes!

You joined our family just one year ago and raced into this world and you are still going at 120%. You are always on the go, don't want to miss a thing, and you are now officially a toddler - toddling around on your 1st birthday. Well just like your delivery & entrance to this world went by in the blink of an eye so has your first year.The most exciting part of getting gifts are the boxes they are in. One of our greatest gifts from God was you little Madi.Big Sister Lexi likes to be just like her little sister. Sisters are also one of the greatest gifts in life.This little girl knows how to tear into her cake - you must have been watching daddy eat this past year.

you are walking short distances on your own
can say mama, da, daddy, nigh-nigh (night, night)
have 4 bottom teeth and 1 top tooth with another top tooth poking thru
drink 3 - 6 oz. bottles a day
wear size 3 diapers
are done with baby food
love mac'n'cheese, hotdogs, strawberries, bananas, grapes, ham, cheese
love to play with drink coasters, anything your sister has, balloons, blocks, stacking cups
likes to dance to music, snuggle with mommy, give daddy kisses
you absolutely adore your big sister and cry if she is not with you when you go to bed
you make mommy & daddy smile more than 1,000 times a day

First Day of School

Today, begins a new year at Shepherd of the Desert Preschool. Hard to believe she is in the oldest class at the school. It seems like just yesterday we were picking out a place to begin her school experience. She has grown so much physically, academically, spiritually, and socially. We can only wait to see how much she grows and learns this year with Mrs. O & Miss Shirley. This year the school changed to a new location so they rolled out the red carpet for the first day!Alexis and Sophie (a friend she has had since she was 1 month old)

California Vacation

We've been over in California this last week. It was great to escape the heat - everyday we enjoyed the beautiful outdoor weather. It was Madison's 1st vacation and overall, she was a pretty good traveler. These are some of our favorite moments and photos from the trip.
Getting ready to head out of town - this little girl is excited to go to Disneyland.
Sunday night we took the girls to Balboa Island Park. Madison quickly pointed out the carousel to us first thing when we got there.Look at that smile - having a good time so far.This princess chose to ride the little pony on the carousel.
Monday, we visited Newport Beach. The girls had a blast at the beach.Alexis' one wish was that she would find a starfish on the beach and her wish came true.Madison really liked the water and the sand. A look of surprise as the water touches her back.
On Tuesday, we headed over to Disneyland!Our first line of the day - Peter Pan! Our first ride was Snow White - but thankfully there was no line, which means no photo op :(Daddy & MadiOne of daddy's favorite rides "the tea cups" - apparently not one of Madi's favorites.having fun looking for Nemo in the submarineAlexis participated in the Royal Coronation with Snow White
Madison got her first set of Mickey Ears!
Wednesday, another busy day at California Adventure.Tow-Mater and Lightning McQueen posed with usMater and LexiMadi dancing to the Disney Junior showMommy and her girls in front of the Mickey Ferris wheelFamily photo with GoofyMommy and Lexi braved the rapids ride.A guppy kiss for flounderMadison takes her rides very seriously. And if she wasn't holding on, she was fascinated with the seat belts.
Thursday, one last day at the parks.We were greeted by Mickey first thing when we walked in the park!
to infinitely and beyondFriday was our last day and it was a day of relaxation. We took the girls to see some tide pools at Little Corona del Mar. Can't believe this little sweet pea is about to be one!Lexi loves finding and collecting sea shells.