Wednesday, July 27, 2011

Home Sweet Home....

Just realized I better do an update and tell everyone we did make it home.  Reagan's stay overnight in the hospital following her cath was uneventful and so last Thurs. morning she had a lung profusion scan and then she was discharged.  We took it easy that day and the next to allow her to catch up from her cath.  Then on Friday night, the boys (Nolan & Rod) were able to go to a Giants game

and the girls (Reagan & Jen) stayed in for a girls night in the hotel.
Room service and a movie

Then on Saturday we flew home.
This is actually from our trip out, but Reagan did the same thing on both flights- slept!!

Here are a few pics from our trip:

Reagan checking out the fountains near our hotel
Her fearless brother truly experiencing them

  
Acting crazy

Just relaxing
Frog Fountain at Stanford Shopping Center near hospital
Morning of cath, all dressed and waiting to go
How we left our baby girl in the cath lab after watching her be put to sleep with the mask
Our friends Anna & Hunter who we met last summer.  Hunter boy (whose heart is not fixed yet) was in the hospital for a dehydration issue and so we got to visit them while Reagan was in the cath lab.  Anna's husband, Rob, is in the Marines & so we share a common bond in two ways.
Reagan in recovery room after cath trying to wave
Discharge day- so happy to be out of that place
Ready to party
The greatest son & big brother in the world!
Hanging out in airport, ready to fly back home to Texas!

I know it's alot of pics but since I couldn't add them all week, I had so many to choose from.  Oh well!

It wasn't until we got home that I was able to read over Reagan's cath report and actually read the numbers.  I was quite shocked to find that her coronary artery that the cardiologist was so concerned about and therefore ended up ballooning only measured .35 mm instead of 1.4mm.  After the dilation, thankfully, it now measures 1.2mm.  I am so thankful she had the checkup when she did because if that artery were to have closed and cut off blood supply to her heart, she could have a massive heart attack.  I am also thankful to the doctors who commit their life's work to these kids and use their talents to intervene and help them.  Thank you Dr. Perry, Dr. Hanley & many others!!!
It is now our prayer that as Reagan grows, her vessels will grow with her and not continue to narrow so that she can get adequate blood supply to all the important areas of her little body.  She is such a fighter and miracle!  Rod and I stand in awe of her daily.  Because of that tough spirit of hers, however, she keeps us on our toes and is already 4 going on 14.  I pray by her teenage years, her heart will not give us trouble as she will probably be full of it herself!!
Thanks again to all for your prayers and support through this journey!
-Rod, Jen, Nolan & Reagan







Wednesday, July 20, 2011

Our Week So Far........

Hey everyone,
So sorry I have not updated since leaving for California.  We did not bring our laptop as it is pretty much shot from spending a year in Afghanistan with Rod.  There are no computers at our hotel so we have had to wait until being at the hospital to use their computers. I also don't have a way to add pics from this computer. So sad, as I have taken some good ones since being here. Oh well, will add them later.
Since arriving, we have totally enjoyed the beautiful California weather.  We've been wearing jeans and jackets, so different from Texas. Our first day, after stopping at the first In-N-Out Burger we could find, we finally made it to our hotel and spend the rest of the day exploring the grounds around the hotel which are quite nice.  The boys, Nolan & Rod, brought their baseball gloves so they have taken every opportunity to go out and play catch since the weather is so great. 
Sunday morning, we were able to watch the Women's World Cup game in our hotel lobby on the big screen with other USA fans.  Unfortunately, we lost but it was a fun game to watch.  We then walked to the nearby movie theater and took in a movie together as a family.
Monday, we had planned to go up to San Francisco for the afternoon and catch the Giants game that night.  Unfortunately, we were having trouble getting tickets online so decided to try our luck at the gate. Our luck turned bad, as the only tickets available were Standing Room only.  Rod & I were not up for spending 3 hrs. standing with kids so decided we would shoot for Friday night's game instead.  We then went to a nearby park and while Reagan played, the boys played catch again near the park.  It was so great being out as a family and letting the kids play without sweating to death until.....a little boy accidentally knocked Reagan over at the park.  She was on a platform about one step high and lost her balance and fell to the ground.  She immediately began crying and had a bloody nose.  After finally getting her calmed down, we decided to find somewhere to have dinner and then head back to our hotel in San Jose & call it a night.  Fortunately, we found a nice casual place where we could sit outside and eat with our bloody nosed daughter.  The place we ate were kind enough to give us a cloth to put ice in to try to stop the bleeding.  As Reagan takes aspirin daily, it was quite the challenge.  In fact, it wasn't until we finally got back to our hotel, bathed her, and held her down with ice on her nose for quite awhile, did it finally quit bleeding.  We put a band-aid across her nose to protect it from getting scraped again.  The boys were teasing her and calling her the villain on the new Harry Potter movie because she looked like she didn't have a nose. To which, she let them know how she felt about that comment.  Ha!
Tuesday, was Reagan's appt. in the Heart Center.  She got an echo and we met with the cath/anesthesia team about her cath.  We then were able to enjoy a little outside time again by our hotel pool.  It was a little cool to swim but felt good just basking in the sun.  That night, we were able to connect with some sweet heart friends we have met through this journey, the Nelsons.  Justin & Victoria's daughter Moriah has the same heart condition as Reagan and are such a sweet family and testimony to persevering this life with a special needs daughter.  It was great to share the company of their family and see their newest addition, baby brother Jadon, whose only 2 wks. old.  Thank you Nelsons for a fun night of food, friends & fellowship!
And then we make it to today, Wednesday, which has been quite a day in itself.  We have been at the hospital since 7am this morning.  Reagan was the first cath of the day at 8:30.  They had reserved 4 hrs. for her in the cath lab but as we know, Reagan usually keeps the doctors longer than expected.  The cath showed all good numbers as far as pressures in her heart but it unfortunately showed she had narrowings in 4 of her pulmonary arteries which they were able to balloon and open up more.  We then got the dreaded call about the time she should be finished telling us the cardiologist wanted to talk with us.  He told us Reagan's coronary arteries, which Dr. Hanley severed in her last surgery but then miraculously repaired and saved her life, had a narrowing that needed to be addressed. We had to sign a new consent for them to go in and balloon that artery with hopes that it would open up and allow more flow.  Otherwise, a stent would need to be placed in that artery and that is not a favorable option as those tend to clot more often.  This is something adult cardiologist deal with more & so one was called in to work along side the pediatric cardiologist to attempt ballooning the coronary artery.  We signed the consent, said a prayer together, and then anxiously awaited the results.  It was a stressful time and not what we had anticipated at all, but finally we got the call that they were done and it went well.  The cardiologist then took us back into the imaging room and showed us all the pics from the cath and explained each one.  The before/after of each artery that was narrowed and then the ballooning of the coronary artery.  Oh, by the way, they also explored Reagan's blood clot which they determined to not be a clot after all, but a narrowing and so they also ballooned that area and found better results afterwards.  We are so thankful this intervention helped for now and pray that in the coming weeks, months, her vessels will continue to grow and not narrow again.  Because of the issue with her coronary artery, we now will have to come back in 6 months for another cath to be sure these areas are doing ok. She is spending the night and will have a lung profusion scan done tomorrow and then hopefully discharge.  She had some bleeding and discomfort at her cath site so has had to lay flat for longer than she wants.  Hopefully, she will be able to rest and have an uneventful night.
We are sooooooo thankful for all of you, your supportive messages and prayers especially!!  Thanks again. 

Friday, July 15, 2011

California Bound....

I know it's been awhile since updating but as they say, no news is usually good news.  We have managed to stay out of the hospital since May.  We have been very busy at home ever since.
Finishing up the school year
Reagan & her homebound teacher, Mrs. Melissa

Since Reagan has done so well learning lots of things from Mrs. Melissa all year, I decided I would start a homeschool program with Reagan over the summer to help retain as well as add to her knowledge base.  She is so smart and loves learning!  We have successfully done a homeschool lesson M-Th every week this summer.  I am using the program Handwriting without Tears which was developed by Occupational Therapists.  It has been great for Reagan and she loves it.  In fact, if I get busy she reminds me, "We have to do homeschool."
In addition to doing homeschool, Reagan attends her gymnastics & physical therapy once a week, speech & occupational therapy twice a week and we've been going to the public library this summer which she enjoys.
Between Reagan and Nolan's schedules, we stay quite busy and Reagan enjoys being her brother's #1 fan
at his baseball games
at his track meets
or simply playing a football game together at home

In addition to adoring her brother Nolan, she loves her daddy.  We had the joy of welcoming daddy home from Afghanistan in July.  It was a long year but we all survived!
We have enjoyed our time back together as a family since Daddy returned home in late June.  
Welcome Home party
Horseshoe Bay Resort


and even a trip to the nail salon (with Daddy) to get her nails done in prep for our trip to California
Yes, I did say California.  Reagan is actually overdue for her one year post surgery heart cath.  But because Rod was still deployed, we were able to push her checkup to July.  Last May 2010, Reagan got her heart fully repaired.  It is routine to have a heart cath done one year later to check on her heart, vessels, and in her case this time, her blood clot.  We will leave our house before the sun comes up in the morning to head to the airport.  The four of us will all fly to California for Reagan's checkup and heart cath this coming week.  While there, we will try to enjoy the nice California weather and time together as a family.  Her appt. in the heart clinic is next Tues. and her cath is scheduled for Wednesday.  We will keep you posted on the results.  To all our California connections, The Shirleys & The Nelsons, we look forward to trying to see you while there this next week.
We appreciate all your prayers for Reagan, her doctors & nurses and our travel safety. Thanks for looking in!!