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)